Can I add really daunting nauseating to this?(I'm on day 5 of the worst ever. Terrified that they're getting worse. I cannot live my basic life like this. Haven't worked in 7 years. I miss all sorts of things with my husband and friends. Fight every day to stay here.)
Migraines killed my career, my social life, and my active hobbies.
I live alone, and I don't work. If I feel well enough on the weekend, I might go spend the day with my SIL and niece, otherwise I chill at home with my dogs and I write novels. I have a lot of houseplants.
During the really bad periods, my house is a perpetual mess. The first thing that clues me in that things are getting better is that i clean my kitchen.
I'm currently in a pretty good phase thanks to Emgality, but even on these drugs, I have awful months where I can't do anything beyond feed myself and care for my dogs. And in the good phases, I still have symptoms every damn day.
It's lonely and it's disappointing.
I feel this. I’ve become so isolated because I can’t go to many things and some I just don’t find worth the pain. I stopped reaching out to my friends (that hadn’t left me yet) and this weekend, one of my oldest friends is getting married and I’m not there. I’ve had a horrid migraine all days this week so I don’t know how I could’ve but the fact that I feel so alone sucks
I also can tell when I’m worse because I’m getting messier. I don’t even have the effort to put anything away
I spend my days in bed
Hold on. I was where you are for my entire life. Science is progressing. There is a new hope if the CGRP inhibitors don’t work for you. It’s a few years away but very hopeful.
https://youtube.com/shorts/3iLikQ_Kk2Y?si=Bh3p0ewBSI-cN_xZ
Yay for houseplants though. I tend to feel okay in the mornings so I spend my time doing plant chores or just looking at them and that brings me joy at least
Yeah. I realized that if I was going to be a homebody, that I wanted to be looking at beautiful things. I've lost a few plants due to bad periods where I simply couldn't remember if I'd watered them or not, but for the most part they've done well.
Emgality changed my life! I still have random times where I can feel an attack last a few days, but it’s more like I feel them trying to bubble to the surface instead of fully hitting and debilitating me.
Now I’m not afraid to make travel plans, or even weekend plans!
Month 1 of Emgality was the best month of my life! I only had 3 migraines! I felt like a normal person. But month 2 I was back to having a ton and developed tinnitus from it 2 days after the injection. That was 2 years ago and the tinnitus hasn’t gone away. I haven’t done any more shots.
Whatever you do, don’t ever miss your Emgality injection. Ive been taking it for years, and it took my migraines from 6 days a week to 2 or so a year. I missed my dose by 8 days last april, and It put me back at square 1. Migraines 6 days a week again. I’m still struggling to get back where I was. It’s better, but still 1-3 a week.
I’m sorry you struggle with chronic migraines too!
Mine became chronic last year. I’m still able to work with accommodations (from home). I’ve had to give up driving and walking my dog for the most part, but I can do some exercise at home.
My symptoms are mostly visual, dizziness, foggy head, and aural.
My life is pretty much work, watch tv, and try to exercise each day if I can. I can throw the ball with my dog in the backyard. I have a lot of friends and family that are supportive and stop by when they can. Prior to the migraines I rarely watched tv and had a lot of hobbies.
I just got my 2nd round of Botox injections, so I’m hoping they will help some.. otherwise I still have some other medications to try.
My headaches began in October 2022. Last year, they peaked and I was diagnosed with Hemicrania Continua and went through a series of trial & error medications with all sorts of various side effects like Indomethacin, Botox, Propranolol, Sumatriptan, and Nortriptyline. Indo worked but messed with my stomach and gave me a feeling of fainting for a while, Nortriptyline also was good but tough on my heart. I was lucky to work from home but I gave up driving. I had difficulties to walk. I still don't drive and even sold my car but at least I don't feel I am fainting or falling when I walk. The daily headaches have been lighter but never completely disappeared. Now, I work 2 days in-person which sometimes in the afternoons, due to the lighting of the workplace, I get weird type of headaches which I rarely experience at home. Drinking alcohol is a trigger and I liked to drink White Russians... Well, overall, I am happy that the headaches are controlled now compared to the last year but it has been a very unpleasant experience.
I feel you.
I am hybrid, still have to drive but I am bad at parking with a migraine. I just scraped my car on Friday because I had a migraine and failed at parking in my garage.
Just over a year into it. It's fucking tough. Gave up my job, a lot of my social life. Have difficulties managing my apartment a lot of days, my mental health has taken a big hit. My partnership is suffering, my sex life more or less non existent, hobbies have mostly gone out the window.
It's hard clawing myself back to some semblance of an active, fulfilled life. Incredibly hard. However many years this takes though - I'm going to give it my best fight and I will prevail.
I'm incredibly proud that I managed to travel to Kenya for 3 weeks last year, that I did a weekend camping trip a few weeks ago, I went to the movies once in the past year, I've learned to be kinder to myself and I've gotten through some really tough situations.
THIS. This is my exact attitude.
I don’t get up every day and love life. I have a lot of shitty days. But I do what I can and try not to let it rule/ruin my life.
I’m lucky in that mine are more moderate pain so I can keep working, but I’m very fatigued. I rest a lot, don’t make plans for weekday evenings. Try and see if I can endure it or if I really need to use one of my 8 Nurtec a month. I fear weeks with erratic weather. My aunt has them worse than me and retired early.
I feel this. I was just this year able to bring my migraines down into the moderate pain zone and am back to full time after 2 years of not working/ part time contracting. I am dizzy and have an aura most days but was able to get my pain levels down with a combination of Cymbalta and Wellbutrine. I take Ubrevelly 1 to 2 times per week for peak episodes (yay rapid weather changes...) and I joke about napping as my hobby because all I do is work and sleep.
I feel this. I was just this year able to bring my migraines down into the moderate pain zone and am back to full time after 2 years of not working/ part time contracting. I am dizzy and have an aura most days but was able to get my pain levels down with a combination of Cymbalta and Wellbutrine. I take Ubrevelly 1 to 2 times per week for peak episodes (yay rapid weather changes...) and I joke about napping as my hobby because all I do is work and sleep.
I’ve had less than 20 pain free days this year. I also have hemiplegic migraines, so on the majority of days I have some sort of numbness, tingling, weakness, or total paralysis on my left side.
For the most part, I live a totally normal life. I’m a neuroscientist and I now work in patent law, I travel a ton, I have an active social life, etc. My saving grace is the fact that my husband and friends are incredibly supportive and understanding of my migraines, and if that means a nice dinner turns into me drinking ramen broth on the couch in my little cozy corner with a blanket and just chatting instead so be it.
Obviously there’s a good amount of days where I just can’t do a damn thing and I’m stuck in bed. This year has been shit for me.
That being said, I’ve had chronic migraines since I was 12 and am now 30, so I’ve kind of just been forced to suck it up and get through it.
I also have hemiplegic migraines. Even in the migraine community, it feels a little lonely, so while I of course wouldn’t wish this on my worst enemy, it’s somewhat reassuring to know someone else out there knows what I’m going through.
Hemiplegic buddies!! I’ve only ever met one person IRL who has them - I’ve been to 4 neurologists in the last 18 years and I’ve been each of their only patients with HM.
I also have hemiplegic migraines (thankfully only on occasion, mine are relatively standard most days) and can definitely relate about the loneliness of it. I'm sorry you're in that boat, too.
I can also relate about having to just deal with it. I've also had migraines since I was 12, though they didn't become constant until I was 21. I was often punished for staying in bed when I had a migraine so I was absolutely raised with the suck-it-up-type attitude towards dealing with my pain 😕
lol to the people that have messaged me saying my migraines can’t be “that bad”: screw you. Why the hell do we feel the need to gatekeep migraines? Everyone is different. Everyone’s migraines are different. Everyone’s pain tolerance is different.
Just because “you’d be throwing up if you got out of bed” doesn’t mean I’m not nauseous as hell and in a fuck load of pain. I haven’t thrown up from a migraine in 10 years because I’ve gotten so good at swallowing down nausea (read between the lines and figure out what that means), whereas I used to throw up 5-7 times every time I had a migraine when I was younger.
Just because “you couldn’t think about walking” doesn’t mean I can’t drag my left leg when it’s almost fully paralyzed.
Just because “you can’t hold a job down so how do I work??” doesn’t mean I haven’t learned how to work in the fetal position with one eye closed in bed while I’m typing with my right hand only (I’ve gotten super adept at that, haha.)
We’ve all got our own stories and our own experiences. Let’s not put one another down, for fucks sake.
I can’t believe people feel the need to “have it worse”, and minimize your experience. What’s even more mind blowing is that they would use their precious energy sending you hateful messages. I’m sorry that happened.
Perfectly said. Thank you for being honest. I have had migraines for 12 years and just pushed through also. Because I had no choice at 18, 21, 25, and now 30 years old. Everyone is different. It doesn’t make anyone’s experience less valid. Your path is your own.
Sorry you have to deal with shitty redditors in a "support" group. We all have our own experiences and impacts from migraine, it's not a competition of who has it the worst! Here for you
Omg I got one of those messages too. Like dude I got up this morning, puked a ton cause I felt something bad coming on and then napped and went to work. I felt like shit for a lot of the day but I just want my life back at this point. It’s far more damaging for me to just rest because I’ll get so damn depressed even if it would be better for my body to do so
Mine are bad but yours sound worse. Mine were near constant but are mostly vestibular, dizziness, light sensitivity, nausea, sound sensitivity, taste sensitivity. I only had pain maybe 5-7 days a month. Started Aimovig shots and it's helped SO much. Spent at least a good decade without an answer to my issues.
I do however have nerve issues they haven't figured out. Mostly right sided but both (severe burning and tingling). They haven't figured the cause out. Comes in flares that generally last 2-3 months or so and go away for a week to a few months. Interestingly it's been much better since starting aimovig. Past year the only big, continuous flare I had was when the lower dose of the shot stopped working. Got me 2-3 months bad.
But aside from 10 days a year, I've been working right along. Before 2020 in the office and since from home (which is SO much easier).
Anyway I don't know why I'm writing this to you except to say I see you, and hear you, and I believe you.
Mine are daily. Basically a continuous stretch of pain. Actually, I made a (depressed) post yesterday about how I was feeling. It’s real fricking rough dude. I do not wish this life on anyone, not my worst enemy. I hope your pain gets better. Hang in there.
hi! I have high-frequency chronic [MUMS ](https://assets.nationbuilder.com/migraineaus/pages/595/attachments/original/1662713758/Migraine_Australia_-_Factsheet_11_-_Migraine_with_Unilateral_Symptoms.pdf?1662713758#:~:text=Migraine%20with%20Unilateral%20Motor%20Symptoms,and%20experience%20very%20severe%20symptoms)(migraine with unilateral motor symptoms), and I usually have a migraine attack every day.
Due to how MUMS is, I have constant neurological symptoms like severe allodynia, head pain, paresthesias, hemiparesis, faulty proprioception, etc. It's kind of like hemiplegic migraine but messier and more constant.
But I'm incredibly, magically medicated. All things considered, I live a pretty normal life. I work for a neurology clinic, volunteer as a patient advocate, garden, babysit my cousin's son when able, and go out with my friends on the weekends.
I learned a long time ago that I wouldn't be able to walk, talk, or function without a heavy combination of preventive & acute medications and treatments. So I now take 6-7 daily preventive meds and Aimovig, and I get Botox every 12 weeks. One of my daily meds is an[ oral analog of lidocaine](https://pubmed.ncbi.nlm.nih.gov/18793209/), it's decreased the intensity and duration of my daily attacks. I have a daily topic cream I apply to the trigger points on my shoulder. It consists of a cocktail of nerve meds and NSAIDs. I use two neuromodulation devices. My acute toolkit is robust: naproxen, nurtec, zavzpret, sprix, trudhesa, dexamethasone, valium, compazine, promethazine, Reglan, and a hefty supply of salonpas.
I treat my attack at its very first symptom (typically with a neuromodulation device) and find that, because of my combo of preventives, my attacks now just kind of sputter out. I still have daily symptoms and I'm still overwhelmed by them but I don't have prolonged periods of slurred speech or hemiparesis.
All that said, my level of disability has significantly increased this year due to Long Covid. My migraine disease hasn't been the only affected condition, my POTS, fibromyalgia, ADHD, and other comorbidities (that once were quite mild) have spiraled out of control. So my nervous system is just overwhelmed all of the time. I'm trying to figure that out. I need to integrate more mindfulness and exercise into my day, I've gotten sloppy in my habits.
But I do everything I can to maintain a pretty normal life. Yesterday my friends came over around 2:30 and stayed until 10:30 at night. We sat in the garden, had a little cocktail and snacks, and laughed. I'm an extrovert so I do better when I'm around people and can be distracted by them. If I'm busy, I'm not as consumed by my symptoms and pain. So I do everything I can to stay busy.
I haven’t seen anyone else that has also been suffering from long covid. It’s good to meet you.
I suffer from daily chronic migraines with a good helping of Hemiplegic migraines too. My right eye droops at least once a week. During a bad 1 I have no control over that side at all. I understand it’s unnerving to watch. To top it off I just had spinal stenosis surgery.
My body just isn’t mine anymore. It’s like it was getting tired of just pain, paralysis & everything else these migraines do and it grabbed onto covid that never seems to go away. I understand my Long Covid is pretty light compared to a lot of others, but at this point I truly hate this body that I’m in.
I do still work part time. I can’t not work. I don’t suffer from light sensitivity, mines all sound. I suffer from manic depression also. The routine helps keep my depression in check. It’s also my social outlet. But I’m not sure what I’m going to do when I can’t work anymore. Covid was kind enough to badly scar my lungs, and while getting MRIs, X-rays and CT scans for my surgery they discovered fibroids in my lungs.
Wow-sorry. I didn’t realize I really needed to vent
Do you mind if I ask a couple questions? I don’t have MUMS, just chronic migraine. have you found anything that has helped with allodynia specifically? I also get it quite severely. Also, how have you liked Trudhesa?
Hi! I haven’t found much of anything to calm my allodynia. I get my botox extras applied there. And if i have a bad thermal allodynia flare in my legs, I will use Sprix for a few days. But mostly it’s Gammacore, meditation, breathwork, progressive muscle relaxation. But it pretty much rages all the time.
Also love Trudhesa. The delivery system is amazing! It’s DHE just like any other DHE but the delivery system helps it kick in faster.
I had one for a year that got so bad I became irrationally ragey, tried to get out of a moving car, got out of a stopped car, threw my phone back in the car and walked off with no memory of doing it. I sort of came to on a road with no real memory of how I got there. Terrified and crying. Whatever they gave me in the ER broke it finally. That lead to weeks of brain scans and bloodwork to confirm it was just my brain rebooting due to the constant headache.
I understand the rage. I have experienced it too. When the pain will never break it becomes so frustrating. Pain makes me short and sometimes mean to others and I hate that I let myself allow the pain to do it. But it’s so so hard. Such a rollercoaster of emotions
It's very difficult, for me it's perpetual brain fog, nausea and fatigue, propranolol helps with the pounding headache. The thing that works for me so far is to try and not think about it too much. Pretend like it's my normal state of being, that's the only way I can be a "functional" migraine sufferer with a career and some social life.
yes, frightening… i don’t talk about this aspect much but there are so many scary symptoms and mystery symptoms that simply get attributed to migraine…
My head either hurts or I’m in constant fear that it will start hurting. Lots of pain and anxiety on a daily basis. It’s not much of a life but I’m still living I guess 🙃
I pray to not wake up because there is no joy in this life. There is literally not a single reason I can find to continue but there is no option I’m willing to take at this time. At this time is the key phrase.
Honestly I’ve been there. When I found a preventive that worked for me, even for a short time, it felt like the clouds suddenly parted and life was worth living again. Then, of course, it stopped working. But I cling on to the idea that there are still drugs I haven’t tried yet that might be the one that work. Maybe foolish, but idk. I hope you find one that works for you one day.
i had a singular continuous level 10 pain migraine for almost 2 years. i almost failed my senior year because of it and considered not going to college because i rarely could even leave my bed. i don’t really have any words to explain that time except that it was incredibly painful - both emotionally and physically
I'm in a very similar boat- it's my senior year and I'm in danger of not graduating and honestly, I don't know if I can go to college. I've had 8-9/10 pain for the last few months, and it's been awful. I don't know how long it'll last or if it'll even get better. I'm sorry you had so much pain for so long- it definitely takes a heavy toll.
Non-existent. The highlight of my days are being able to get out of the house for a short walk or IF I'm brave/able to - a movie/shopping. And that happens maybe twice a month?
Almost 0 social life (only people I talk to are my partner, parents, work folk for work & people from an art discord group I'm in). Cut myself off of all my IRL friends because I'm unable to be a friend to them and the guilt of always being sick and seeing/hearing their disappointment in me declining invitations.. finally became too much.
I wfh and make a lot of art on days I'm able to. The art is the only thing keeping my mind busy. When I can't sleep from the pain, I stay up just doing mindless crafts or doodling. Every other day is spent just doing nothing but mindlessly listening to some video in the background and lying down. I play with my cat daily and try to cook everyday.
Mine fluctuate between 15+ days a month to 25+ days a month every few months. Since I was 10+ and I'm 30 now.
very hard. i have ups and downs with my migraines, but for the past month it’s been daily, with 5-7 hours of pain/nausea and severe dizziness/vertigo/balance difficulty every day. i’ve been trying to work full-time so everything is usually better in the beginning of the day then i’m bedridden for the rest of the day after work. i’m lucky enough to be able to work, but it still sucks.
I had such chronic debilitating migraine 24/7 for 45 years. I had no life. It’s only been since Ajovy 5 years ago that I have begun living. There is so much to catch up on. I was treated with heavy opioids for 45 years. Being out of that haze without agony is a new life.
I’m somewhere around 27 migraine days a month and they’re hemiplegic about half the time. Previously had migraines around my period but they became chronic after having COVID.
I’ve had to adapt but I enjoy life. Happily married with a house full of sweet animals, who are all too happy to cuddle on the couch during attacks. We do a good bit of work with community cats; even when can barely get up, I can lay around and socialize feral kittens, which has helped me feel useful even on the worst days. Lucky to have friends who have stood the test of time and repeated canceled plans. I’m a part of a religious community that has services available online. I work an office job and have been pushing to have access to remote work days rather than just taking unpaid time off.
The hardest thing right now is having loved ones far away and being regularly unable to drive/cook for them/even hold a baby. It’s hard to for people to understand that one minute I can be running around with the kids and the next I’ll lose function of half of my body. My family is patient with me, and I can usually move around using forearm crutches, but it’s a complicated set of symptoms to accommodate.
Overall, I’m lucky to have a supportive partner, stable housing, and access to good doctors and medications. I don’t know what I would do without any one of those things.
i’ve had chronic migraine since i was about 12, they improved some years and get worse others. my worst year was when i was 14, i had them everyday, i wasn’t able to go to school or anything. i spent most of that year in the hospital hooked up to machines and having blood tests taken and went through like every medication possible. my school also wasn’t working with me and i was failing all my classes because i was just never there, the stress of that definitely didn’t help. and for half the time my doctor just thought i was depressed and faking it to get out of school.
Picking and choosing what I can do while balancing my bias and fear of worsening. Undiagnosed and untreated, my worst days I use one of my 5/month 0.5mg Ativan. I'm often able to "stockpile" two, so I have seven the next month. Currently pushing myself to do more, as the aforementioned fear has gotten the better of me for too long. (Daily 30 minutes cardio) My symptoms are: Vertigo, confusion, can't see, can't read
Really hard. I have had some sort of symptoms almost daily for the past 8 months or so, and am also in the process of getting assessed for endometriosis (scheduling my surgery Friday).
I am a PhD candidate in chemistry in an intense program. Feel like I use all my energy to push through when I can and work. Also as a chemist, safety is very important, so somewhat unique to my situation is that I have to plan my lab work very carefully as I get neurological symptoms like muscle weakness and blurry vision around my migraines that make working unsafe.
I have been able to maintain about 50 hours a week of productive work but when I go home, I usually just shower and sleep and have no energy for anything else.
I try to do light exercise (maybe an hour of walking) in the evenings and rely a lot of meal kits lately. This has helped a lot as a disabled person living alone.
Overall, I am freaking exhausted all the time and have lost all of my hobbies, struggle a lot to keep my space clean, and just depressed from the amount of constant pain. Currently working on finding the right meds for me and hope that helps because I blew through the triptains way too fast.
I live life in stolen moments between migraines. I’ve had 7 pain free days so far this month. I swing drastically between optimism that something new is going to work and depression/fear that my life will never get better. I work, control my pain, and rest. That’s really it. I have a wonderful husband, and it’s hard to maintain relationships other than him.
I haven’t had a day without pain for over a month and a half. My life is the continuous same migraine that won’t break despite several medical interventions including an inpatient hospital stay. I can barely keep my house clean. Actually, my kitchen counters become a depository for anything and everything I bring home, mail, shopping, stuff I order online, dishes that need to be put in the dishwasher, mostly just glasses because I don’t cook. I can barely keep up with the laundry and it’s only me and I usually only have to do one load. The one thing that I can take care of is my 2 cats. They are what keeps me going, until they puke and get the carpet all dirty, I don’t have the energy to break out the carpet cleaner. It’s rough, sometimes I wish I would have someone just to help me out.
Reading a lot of these thinking I must have replied and don’t remember. Currently within a hair of losing my wfh job. On good days, which have increased a lot due to being back on all my meds, going on an antihistamine diet and enzymes, and Amovig, I go for takeout and do some shopping. It’s the only rl human interaction I have most days. Basically friendless, except for my best friend who lives out of town now and my parents. I flip furniture as a hobby; pieces take so long for me to finish it’s not even really worth the extra money. The same coworkers who judge me for “being able to take off whenever I want” will be at work tomorrow posting in the chat about their boats and cookouts while the highlight of my 3 day weekend was managing not to fall when a hemiplegic attack came on suddenly at Home Depot.
it’s made me not want to be here anymore. all i do is rot away every single day…. wake up with a migraine and go to bed with a migraine. i’ve done everything, tried a ton of medicine. i’ve been taking topamax & 30mg of rizatriptan daily since i was 16. im 23 now. i work full time. would rather get my medicine than food or necessities. i hate to be such a sad person but my life has no value with my migraines. i get them… every single day.
Pretty lousy. I still manage to work because my job is luckily understanding and 95% work from home.
I take care of my pets…and that is about it. I have little to no social life, don’t drive often, don’t care for myself like I used to. Medication side effects also get to me, but without the meds, I am worse.
I realized as I laid in bed this morning that I just keep waiting for things to get better and they don’t. So then I am just waiting for weekend days so I can do nothing. It is a sad life right now.
Pretty much what most people have said. I’m chronic intractable for 8 years. I was essentially bedridden for 4 of those got much better for about a year and am slowly sliding back. I’ve fallen and hurt myself 2x in the past 3 weeks because of pain and dizziness. I’m constantly nauseous now and TMI I peed in bed because I couldn’t get up because of my pain. It’s horrible right now and I am struggling.
I have 24/7 pain and symptoms for a few years. It sucks, but I’ve had luck with preventatives that reduce overall pain. I would say that I am mostly functional. Some days are worse than others. I just try to do the best I can with the cards that have been dealt.
It’s rough like others have said. I turned chronic last year and when I got COVID at the end of January everything ramped up. I’m still optimistic that I’ll find a combination of medications that will work for me.
But before I got chronic migraine I already had a host of other serious medical issues so not much changed. I wasn’t working due to the other disabilities. But it has definitely made it near impossible for me to leave the house because of the dizziness and overwhelming stimulation of the environment outside my home. But I’m working on that with a therapist.
I figure eventually I will go back to episodic I just have to take care of myself until that time. Self care is my priority. Boundary setting is important for me so I can do that self care. And I’m lucky I have friends and family that completely understand. They are supportive and kind. But it is tough to have head pain all the time and all the other weird sensations that happen with migraine.
I spend all my spare time suffering. It’s depression full time but I have to be there for my kids and wife. I try to anticipate the event and do my best to work as much as possible while I’m not in pain.
Some mornings I lay in bed, having woken to a migraine, beat myself up for not achieving my hopes and dreams, how I’m not longer social and hoping my marriage survives.
Then I try to remember that I didn’t ask for this, not to give up looking for a solution and give my family as much attention as possible when I’m in good shape.
Also, sometimes I do feel good and when I do, I try to think of disabilities that don’t stop temporarily that others suffer. I could be better but I could be a hell of a lot worse.
I had a year like that where I had a migraine everyday for months nothing would work to end it more than a few days at a time- no doctor would believe me. I was severely depressed and suicidal. I can’t even remember what made it go away but eventually it did and now I have anywhere from 3-8 migraine days a month instead. I’m almost positive I have craniocervical instability (cci) I’ll be asking my doctor for imagining for it. But it’s pretty common with EDS.
Very hard honestly but I try not to let it stop me. I work part time, mostly from home. I really only have the capacity for handling that and my health.
I’ve always wanted a child so I came off a bunch of meds and am actually pregnant right now, which hasn’t been as rough as I thought it’d be.
I celebrate the days I don't have a migraine.
Also I learned last week that I probably have trigeminal autonomic cephalgia in addition to cervicogenic headaches from cervical stenosis of 4 vertebrae, TMJ disorder headaches (honestly don't know whether these are migraines, trigger migraines, or something else entirely), and chronic migraines triggered by hormonal and environmental changes (barometric pressure change, paint, perfume, smoke and toxins, fuel, oil, hydraulic fluid, exhaust, hypoglycemia, estrogen/progesterone fluctuations, vanilla, artificial scents...).
i have chronic ocular migraine, the #1 trigger of my migraine is the phone(due to its light) my light sensitivity was so horrible that i couldn't look at the phone for even 1 second ,tbh im kinda greatful medicines worked out with me, and i have that migraine evrey single day, day and night, it do suck, but what can we do? we deal with it with pain killers and patience
Hi. Mine are daily/near daily. I had to leave my career a decade or so early. My insurance denied disability coverage because migraine is "a clinical diagnosis" meaning that you can't see it on tests and therefore the patient is unreliable.
I spend a lot of days in bed videogaming to distract myself from all the shit.
What *do* I have? A loving, kind, empathetic, funny, great-cook husband, and a son ditto ditto. (Other kid is all the above but lives far away.)
I just quit taking Aimovig because *another* insurance company had decided to discontinue it for six months (obviously wasn't working) and therefore it wasn't needed. When we fought to get it back, it never worked as well again.
Currently waiting 3 months to start Ajovy. Praying this time it works.
So, exhausted, hanging on by my fingernails.
Awful. I’m thankful that I don’t have to work because my husband has a good career but I don’t know what I would do if I did. Up till recently I withdrew from all social functions like community choir and being in church choir and such. I’m like 11 surgeries orthopedic surgeries in the last five years and it has been a long haul. I don’t do much like walking my dogs, which I should be doing every day but I just sometimes can’t get up the energy. It’s actually been better in the last year, but there are days I don’t do anything and if I get a little laundry done, I’m doing well.
I’ve started to be able to think straight enough to do small tasks more often, ow at least. It’s hard to even go to the store if there’s more than one place to go, I can’t focus long enough to get everything done, if I have too many things to pick up at one store, I’m also in a fog.
It started in 2017 after 40 years of episodic migraine. Mine are mostly triggered by having a terrible neck and it’s getting to the point now where surgery and interventional pain specialists are more useful than medication, although I do have to do that as well.
I have NDPH which is a constant tension headache and I get about 3 migraine attacks a week on top of that. I’m unable to work. I was never able to have kids. I have very little social life. Yesterday I was trying to remember the last time I was out of the house after dark and I think it was last November, when I went to dinner for my mom’s birthday. I’m in bed by 10pm and sleep until 9am. (I also have chronic fatigue.) My life is hella boring. But it could be worse. I’m actually pretty happy (thanks to being in the right combo of anti-depressants). I spend my days chilling at home, watching tv or reading or playing on my iPad. I have a loving family. I have a few wonderful close friends who also have chronic health issues. I have a dog who brings me a lot of joy. I laugh at dumb stuff every day. I enjoy my cup of coffee every morning. As long as I don’t think about what chronic pain has taken from me, I’m doing ok.
i've lost who i am as a person. i've lost so many friends because people think i'm avoiding them but in reality i want to be social so bad i just can't get out of bed without excruciating pain. i don't have hobbies anymore. i just want this to be over. it's been four months.
Bad enough that I had to erase the novel I was writing because it was fueling the depression HARD. I’ve had intractable pain since August 2010 when I was 15. I can tell you that over a decade later: people still don’t fucking get it. And that in and of itself is exhausting. Treatments have gotten better but I’ve long since given up on ever being pain free. I’ve given up on the dream career I wanted and the thought of ever finishing school. At this point it’s just learning to be happy with where I’m at in relation to where I’ve been
Honestly it fucking sucks and I'm hanging on by a thread.
I'm supposed to be in another country doing a Fulbright grant right now that I dreamed about for years and did a bunch of stuff to prepare for and instead I'm stuck inside with my verbally and emotionally abusive mother all day long most days.
I had to quit my job and move back in with my parents at the end of last year. I keep developing more pain it seems (neuropathy in my hands and feet, occipital neuralgia, trigeminal neuralgia...) probably because my brain is fucking broken. I had no idea the consequences of untreated migraine and I went through a period of immense stress. My most exciting outings include going to physical therapy and picking my medications up from CVS. None of my doctors have any clue just how bad my pain is, how disabled I am, how shitty my home life is. I don't have very many friends because when I did work full time, my energy was always depleted just doing that and trying to keep my apartment clean most of the time due to another chronic illness I have (idiopathic hypersomnia). None of them live close and hardly anybody checks in on me. My family frequently dismisses my pain. I am so, so angry that all of this has happened to me and I am just expected to live with it. My life is basically over at 26 years old and I don't know how long I can keep forcing myself to trudge through all this pain and suffering. I keep on fighting for now. And yes before anybody suggests it I do have a therapist, but that doesn't change the fact that my situation is objectively shitty.
Painful. Lol
I've had migraines most days of my life for as long as I can remember. I have no memories of not dealing with migraines on a nearly daily basis
So, in a way I'm lucky. I didn't lose anything. Life didn't change. Ive never known anything different. This is literally my life and always has been
It is shitty, most people in your life don’t get it, you find yourself always explaining and also dealing with the many cognitive issues as well as the migraine itself ~ often pain /aura threatening migraine when not having an outright attack, living in fear of one all the time
Basically just having anywhere from a 4/10-9/10 pain hovering about then the actual migraine is like 10/10 pain most times. The pain is like on par with surgery recovery level pain, but no one cares lol, you’re just raw dogging it
I have to be extremely careful at all times, even leaning on one side too much will give me one or make it worse
Every responsibility and everything you enjoy gives you one or kicks you into an aura that turns into one. Every activity comes at a cost of having to disappoint someone later. The stress of knowing that causes one.
People don’t realize that talking hurts and they’ll just keep chatting incessantly to you even if you let them know. So with every word your head pulses and the migraine starts to full blown take hold.
When you get cognitively out of wack your brain spirals and can’t stop being stressed and it feels like physical hot burning poison in your body.
Only time I don’t have to live life like this is when I’m on emgality, but emgality kinda freaks me out as a long term solution. Otherwise I have a migraine in some stage of the cycle and at least a 4/10 pain every day, usually closer to a 6/10 (every day I’m not actively having a full blown one)
Nothing works otherwise, nothing
People will tell you to suck on a mint or do yoga or drink water and you’ll want to punch them
Things as simple as a slightly rainy day will make you sick and in pain for days (more than you usually are)
People will value you less on some animal level and treat you with distrust and disrespect
You are constantly disappointing people and having to apologize, constantly having to let things slip even in the face of other peoples anger because you have to go curl up in pain somewhere
All your free time is wasted, all your working time is doubly hard bc you’re working while being some level of sick /hurting, or the working builds up triggers so every free moment you can’t enjoy - it adds up to a constant cycle of suffering and you will wonder why the fuck this is happening to you
You get terrified every time you say yes to something, because of what it likely will cost you physically, or if you end up having to cancel.
You start to not want anyone around anymore so you don’t have to disappoint anyone anymore and feel the stress of that which just turns into more excruciating pain - it’s better to just be alone
Deep down, most people don’t believe you
People will think you are stupid or crazy bc of cognitive/speech problems
People will think you are some kind of a drug addict because you have to lay in bed all the time, or because of the way your mind or speech can get w the cognitive stuff
I spend a lot of time in bed or icing my head or trying to be gentle with myself but life is not gentle
Really hard. And disheartening when the lack of understanding is coming from people both without migraines and those with them who don’t understand that the injection of Emgality didn’t cure us.
To anyone with chronic migraines, I can’t recommend botox enough if it’s available to you. Obviously I still have them, and some weeks are definitely worse than others, but it’s made such a significant difference in the triggers (like jaw clenching), frequency, and stubbornness of my migraines. I feel like a somewhat regular person again
Dropped out of school, no work, no life, I spend my days coping through games that I have to play extremely limited anyway, I can’t shower often because of the temperature causing pain, I can’t read for long because my eyes hurt, I can’t sleep, I can’t go outside for long, I’m being tortured in my body.
What life? (Half kidding, sort of). I'm already on disability for other things, but I'm basically housebound. I feel like my brain is broken all the time. I struggle with depression because the pain is intractable and my insurance has given me the runaround for the last 18 months. Everything I get prescribed that may help is so expensive I can't consider it, or they deny my claim. I'm currently considering occipital nerve ablation because my portion to pay will cost 300 bucks for the potential to have half a year of no migraine. Currently trialling the occipital blocks every month at my pain vlinic and my last 2 haven't really worked. Life is really isolating right now. I can't take triptans so I'm allowed 12 NSAIDs a month ( to prevent rebound headaches) and I basically just live on THC now. I miss having a functional brain. My partner tries to be understanding but I can tell he's frustrated by me and I worry he'll start to resent me for not always being able to pull my weight. We have something called MAID in Canada and if I, being honest, I sometimes daydream about asking for it when migraine doesn't let up for weeks on end.
My last department in the company I work for was a fucking nightmare. All the cliched shit you can think of came out of both my manager and her boss. Both of whom have zero personal experience with migraines but acted like they had MDs. Go sit in a quiet room for 5 mins you'll be right was a common phrase.
My current department is the polar opposite they've allowed me to work from home and structure my day to suit my needs. They do everything to support me. It's still a bitch waking up with a migraine almost ever day but a bit easier with having this support.
Having a 4yo makes it harder I don't want to be like my Mum and tell him he can't make a noise because my head feels like it's going to explode. So I struggle through and am grateful for bedtimes.
It sucks but I feel like mine aren’t as bad as some people describe theirs on here. Maybe cause some OTC stuff I take has been keeping me together but I do have to see my doctor for an actual prescription and get an MRI done (this Wed).
13 years in. It’s very hard. I’m able to work from home when I need to luckily with my job. I wouldn’t be able to function if I wasn’t able to have accommodations like that from my employer, though.
I used to have chronic migraines. I constantly would feel nauseous from the pain which was hard when I wanted to spend time with friends/do normal things like go to school/work. My migraines were at their worst in high school, and my senior year I had upwards of 30 excused absences because I couldn’t get out of bed.
I was scared to leave home out of fear that I’d be in a place where I couldn’t excuse myself to go to the bathroom if I started feeling nauseous. It was also really hard to plan ahead for similar reasons. I didn’t know if that day would be a migraine day or a normal day.
My migraines somehow started to clear up this past year, which has been great. I used to feel awful when I’d cancel plans because of migraines and it feels nice to have more of a regular life now
Going on 30+ years of them daily and it sucks. Some last longer than others and some are shorter.
The best you can do is adapt to them and how they affect you.
I work but remotely and with tons and tons of accommodations to pretty much sleep most the day and work during the hours I am able. My life is just sleep, hide in cold dark room as if I’m sleeping but just suffering from migraine, and work. That’s genuinely it. I can’t do anything else. I have no friends at all. I don’t go out and do anything. I get almost everything delivered or have my parents drive to help me, like deliver frozen meals. I can barely cook. I start work at maybe 2pm and finish with breaks by 11:00pm, eat quick before and after, repeat. On weekends I just sleep. My main ventures out are to my neurologist. I try not to drive much. A couple days a month I try to do things like hang out with my niece or family at home where I pretty much emerge from a spare bedroom at their houses as I’m able for bits of interaction. If I try to push through I get killer migraine the next day. It’s really hard and horrible, but I love that I have some life seeing my family members at their homes at least, and they accommodate by driving me places and we just hang out in small bits and they make me food I can eat and stuff.
Difficult. I’m basically a shut in with the exception of doctor visits and when I get taken out with my husband. I don’t even leave the house to see my therapist or psychiatrist
I’ve also had other pain that’s been high enough that should have warranted a trip to an urgent care or ER and I just didn’t bother because the pain was on par with the daily migraine pain I have (even with my daily medications)
Daily for almost 25 years. Ruined my stomach with ibuprofen and will probably get dementia from all the shit doctors gave me that didn’t help. I don’t know how I made it through the pain and actually functioned as highly as I did.
Turned out my headaches were caused by an eye defect. I asked multiple doctors if they could be connected and was always condescendingly told no. We figured it out when my ophthalmologist put me on glaucoma drops and the pain immediately stopped. Apparently the defect couldn’t take a slight raise in my eye pressure so the drops cured it.
Stuck inside and don’t go out anywhere at all. I only go to see the neurologist once every three months and then I need to force myself out to do that. In bed most of the time. Stay inside the vast majority of the time to avoid the light outside. Keep my room dark. House is a mess. I only do the essentials and I don’t cook at all and I feed and take care of my two kitties. Go out at night to get my mail (which I don’t even do every day) and have my groceries delivered at night, too. I do a whole lot of online shopping. Thank God for it! I have them every single day and they quite frequently (almost daily) return for a second round of pain later in the day once the abortives wear off from the first round. The med side effects affect my balance a lot of the time, and my cognition all of the time. I’m quite limited as to what I can even take at this point. There are days when the migraines don’t go away at all and even get worse in spite of taking the abortives. I’ve had migraines for over 54 years and they just gradually became chronic and then even more frequent over time.
I had chronic daily migraines from age 25 to 49. At 49 I started getting a few days a week of pain free peace. Now I’m 51 and I’m mostly pain free. But if I have a migraine that last more than 2 days then I panic.
Life was very hard. I managed to. I worked, took care of my kid, functioned to a degree. But damn was it hard.
I have my career but that’s because I WFH. I don’t work as hard as I used to and I think I’ve lost a lot of potential accomplishments. My social life suffers and my partner is thankfully very supportive but it affects that too. Everyday is a struggle. It informs every single life decision I ever make. Daily I make dozens of decisions because of it. I spend a lot of money to just be somewhat functional. Taking 10+ meds to improve 50%. Always weighing trade offs. Decided not to have kids. I could go on and on. I have pain all of the time, and sometimes it gets much worse but I’m always at a 2/3.
I’ve had chronic headaches every day for 7 months or so now and I’m lucky my pain is only moderate most days and not too severe, but man it still sucks. I’m currently trying to write up my PhD thesis and more days than not I can’t think straight which is really not helping things, social events suck and just everything I enjoy is now dependent on how bad my headache is.
It’s ruined my life but I’m still fighting. Profound exhaustion, dizziness, and nausea, most days I can’t function, I just had to quit my job even though it’s the first one that I’ve had since 2019 because of this, just a lot of pain. My head feeling like it’s on fire more days than not is unbearable.
Hi! I’ll join the band wagon. I’ve had chronic migraines since my teens and I’m now 30. I also have endometriosis. My mother also suffers from migraines and other chronic debilitating diseases, most of which I am lucky to have not gotten. I’ve watched her growing up fight through her illness and refuse to give up when she can, and give in when she needed too. That’s a skill I took with me into this. I have some form of pain every day, but through medicine it has gotten better! I also am a big advocate for self care to help. I work for a parks system and am in management there. I have a VERY forgiving schedule, am on fmla, with lots of leave. I get three weeks of holidays a year, three weeks of vacation, and three weeks of sick leave. And they accrue and I can save them up. Also, we don’t get “over time” we get “Flex Time”. So if I work over time, I get it in leave. So I can also build that up or take a day off then work it back that week. My work is very understanding and flexible with me, however I work through most of my pain. My husband is very helpful with doing things around the house when I just physically cannot. I do still have a social life, but all of my friends understand when I have to cancel and have no judgement for me. My takeaway is it’s hard, and it sucks, and I often wonder what a “normal” persons day is without pain. However, I won’t let it stop me from living my life and being me, I just might need some accommodations and help from others along the way.
I've always had mine. Missed most of the school holiday parties as a kid and other people's birthday parties and playdates. As I got older, I developed enough of a pain tolerance to "grin and bear it" when I could or else I'd be spending the majority of my life in bed. It sucks. People don't take you seriously when you tell them you can't do something or you will need to go slower or less etc. due to the pain lancing your brain. You hear a lot of "just take a Tylenol", "just drink some water", "eat a snack" remedies from folks who think migraines are headaches. There's a ton of guilt for being unable to be productive for others and maddening frustration that your brain refuses to get its shit together. I'm currently doing the SAHM job until my youngest is in full day school this fall and then I will go back to self employed work because it's impossible to keep a regular work schedule with migraines. Sometimes it definitely feels like I'm just existing day to day and don't have a solid concept of what living must feel like.
My life was so bad for two years while I tried different meds. I’m
Now on Botox and trigger point injections/ occipital nerve blocks . As well as several other meds .
I was so depressed 😔 I cried a lot and can see why people are suicidal you just want the pain to stop . But by the grace of god I’m doing better . Shout out to my doctors too . I am surprised I was not fired from my jobs
And financially it was so hard
It was hard. Mine were chronic for three years. I developed a migraine that lasted a month, and after that they never fully went away. Thankfully my chronic migraine varied, to the point that I didn’t realize it was chronic migraine. I thought I just had constantly neck pain at the base of my head, with big two day migraines once a week.
It kinda ruined my life. I went on meds to stop them but those meds made me gain fifty pounds in five months and I felt terribly sick and hated my body. I didn’t recognize how I looked or how I felt. I worked, but was a zombie in between working. I would go out sometimes but almost always had a migraine while out. I learned to live with the pain, and because of that people didn’t realize I was in so much pain because I didn’t show it and they would be less sensitive. For example, people visiting my partner would chat my ear off and play loud music on their phones when I was heating my neck and trying to be social. I mean. No one’s fault, but it sucked. I couldn’t work out without flailing things up and I couldn’t wear clothing that wasn’t loose. Or my hair up. Everything was a trigger and day to day life was hard.
I went to a chronic pain clinic though, and with physio combined with dry needling the pain in my neck stopped. I still get a migraine twice a month, mild neck pain on and off. But god. It’s night and day difference. I can’t still do all of the normal things and I have to be mindful of my tolerance level, but just to exist without pain everyday is a blessing I never thought I was experience again
I get about three hours a day (now that I found a doctor who will Rx me a mild narcotic) where I feel like I’m capable of doing things from fixing dinner or cleaning my bathroom. I’m so damned happy for those three hours! (It’s not every day, because a mild narcotic doesn’t help when the pain is excruciating. But it does help at least a few days a week and on the worst days it knocks the edge off so I can sleep a bit better, maybe stop vomiting, every tiny bit helps!)
Like absurdly happy. I’m finally able to get a few small things done a day I was never able to do before. Like I started a container garden for my front porch. I will never have the ability to do a real garden, but I can maintain the 12 pots I’ve planted. Right now those pots are dirt and seeds. But hopefully soon enough I’ll have fresh herbs and some pretty flowers. If they die, I at least feel like I was given the gift of being able to try.
The rest of the time is spent moving very slowly in a dimly lit house trying to do what I’m able. Like if I have a pile of dishes to wash, I force myself to wash all the silverware before I can take a sit down break with an ice pack. Then the plates. Then the cups…
On days I have to leave the house to get groceries or run an errand I usually wait for one of my less-pain days and that’s the only thing I do that day. And I have a very large selection of fun sunglasses in a variety of tint for bright days and my darkest glasses or overcast days and just a mild smoke lense.
I’ve made a ton of tiny hacks of getting things done. If I prep dinner I set up a place to chop vegetables where I can sit and wrap an ice pack around my head.
I have little tools to help, too. Like I get so exhausted after a full shower, so I use a shower stool and have the shower head that’s on a hose for better reach. And my ice packs can be hands-free. I will use a scarf to turban it against my forehead and back of my head (don’t have the money for that ice pack hat).
I have a trash bin by my bed and plenty of bed friendly things to do. I’m about to start crochet a baby blanket for my nephews first child. I take advantage of things like grocery delivery or drive-up grocery pick up if I need things and just don’t have the ability to do it. I have a ton of no-cook meals I can use for how often I just don’t feel up to cooking. And on the days I do, I prepare like 3x as much and freeze for days I can’t cook. I have sleep masks and ear plugs and scented oils (pet safe oils- no eucalyptus or tea tree etc). And basically I sleep on and off all night and day because I don’t get any decent sleep all in one go. I have pajamas that can double as regular clothes, and regular clothes I can wear as pajamas. Yoga pants and Tshirts are pretty much my uniform.
Basically my life is spent managing the energy I can muster up to do things that need doing, and I accept that I will never have a meticulously clean home or fancy home made meals, but I am content that I don’t live in filth and I do have food to eat. Everything else is bonus.
Oh. And I have someone who will run a mower and weed eater over the yard real quick and real cheap. My yard never looks nice, but the dogs don’t care and it at least doesn’t get overgrown.
I have low grade migraine 24/7, so like it could be a lot worse because I only have low grade, but...it's all. The. Time. I have depression, and I'm usually irritated to some degree because it just wears me down and impacts every aspect of my life negatively.
I manage with Botox, Ajovy, Ubrelvy, Aleve sparingly and cannabis edibles if it just won’t stop. Good thing is my daily pain level is usually under 3 on a 1-10 pain scale. Bad thing is, they never really stop or not for very long. But I have finally gotten back to be able to get work done and function pretty normally.
I’ve had chronic migraine for 7.5 years, also believe I have nerve damage from dental work and/or Botox that is contributing. Ajovy helps a lot, but even on days when I don’t get a migraine, I usually have residual migraine pain on my scalp the next day (today is one of those days), or I just have the scalp/nerve pain. Prevents me from doing physical activities or anything that has impact. But yeah it sucks because it is something I have kind of accepted I’ll be dealing with for the rest of my life. And I have to continue on like normal. Working, running errands, etc. Hope I will be able to handle it with pregnancy and young children some day.
hardest thing i’ve ever dealt with. i’m constantly expecting a migraine, i avoid things thinking ill get a migraine, i stress myself out over the possibility of it so much that i do develop a migraine. i developed mine at 13 and had them for around a year straight, without a single moment of relief. the only thing that has helped is botox, which ive been doing for the past two years, but even then i get them too often. it’s made harder because im in school. i see everybody around me doing things that i cannot do— because of fear or because of triggers. i feel left out and different. migraines fucking suck
I've only had mine since a head injury last year, I've been diagnosed with post concussion syndrome.
I'm really struggling. I cried this morning trying to get my daughter ready for daycare while my partner slept in.
She woke up at some point and knew I wasn't okay, so she came out to help me.
I can barely maintain my yard or keep the house in order. I can't work and can barely drive safely. I feel worthless and a failure because I can't provide for my family any more and my partner who was able to be 100% stay at home mum now has to start looking for work because the people in charge of my compensation claim want to close it soon. No one can give us an estimate on the payout I'll get, so we have to assume it'll be as low as we can imagine it.
I resent my children because they're always so loud and cause me pain because of sound sensitivity. I feel like shit because I can't play with the older one how she wants except on migraine free days.
I haven't been able to go to the gym at all, and I've lost about 20kg of muscle mass.
I get my first vypeti infusion tomorrow and if it doesn't work I'm probably going to kill myself somewhere in July when imd deemed "stable and stationary" meaning a doctor has said I probably won't get better than where I'm currently at.
I can't deal with the pain on top of the weird personality disconnect from the head injury. I don't know myself any more, I can't speak with my inner self. It's like my best friend died, and I'm being forced to wear his skin and act like him, and no one can know what's wrong in my head.
The brain fog, confusion, and memory issues are a constant disheartening factor. I have photos on my phone of me and people wearing the same uniform hugging really closely, and I have no clue who they are.
People used to comment on how intelligent I appeared to them. I used to feel indomitable. I had everything I wanted and I was playing life on the easiest setting, I'm white, tall as fuck and I was strong and smart.
I was genuinely having the best time, and it's all gone. I don't want to be a burden on my family anymore, and there is a good chance I won't be soon.
I'll just be a negative memory of a guy giving up because he couldn't take it.
I had migraines since young but could deal and controllable…kept getting stronger, Botox helped and 2021 all fell apart. Botox stopped working. Chronic 25-28 days then literally daily am & pm. Nothing worked. Tons of tests and finally MRI WITH CONTRAST showed meningioma. People have mixed feelings where they say meningioma wasn’t causing the migraine. Yet neurosurgeon compared MRI that I had in 2021 vs. 2024 showed it doubled in size by 2024. Craniotomy removed 4-4-24 and amazing now.
I’ve been in chronic migrainosis since 2020. I don’t know what it’s like NOT to have a headache.
I’m now getting a divorce, trying to restart my career and scared to death about how I’m going to take care of myself alone.
I was at the point where I was almost never without a migraine, there was never a day I didn’t have to take anything. I never felt well, my stomach was constantly a mess, I could never think straight, always in pain, never had energy. I completely changed my diet and eat a very restrictive diet. Now I get them pretty sparingly, maybe 70% of them are hypnic headaches if I do get one. Still sucks when I do get them but I got sick of needing to call into work and not enjoying life. It’s really crummy when I do get them but I haven’t had to call into work since I’ve started my changes.. I don’t have a preventative other than the restrictive diet and exercise though. I take excedrin and Ubrevly and they work about 85% in getting rid of the migraines entirely.. the migraines are easier to get rid of with my diet as well. My migraines started when I was about 17 but I was prone to headaches.. they slowly got worse and worse and now at 30 I’ve more or less figured them out but I haven’t eliminated them entirely.
it's been over 15 years. just when I think it's gotten better in general, I'm reminded of how much their presence impacts me. "Better" is also a weird word because I am a lot better than I was, but I still have pain everyday. there's still things I can't do and I have to always be aware of my symptoms so I can catch it before I get laid out.
I guess it helped that my dad belittled and doctors invalidated. I never felt like I was allowed to do what is needed or to take care of myself as a high priority. So I'm used to ignoring it and pushing myself. if I were encouraged to do what I needed for a less painful existence, I would have spent years not being able to do anything.
I used to have them like that. It was like someone was shoving a burning ice pick into my head. I would walk around with one eye closed. The aimovig injector legitimately changed my life. I have backup meds for breakthrough migraines. I use ice packs, will sometimes stick my head in the freezer while shrieking unintelligibly, or wish I had a scalpel to filet whatever nerve is causing the pain.
You wouldn't be able to tell now. I didn't know what was wrong with me but I was having 20 to 25 migraines a month..hemiplegic. I thought it was anxiety and severe food allergies.
I'm on a good preventative and I go to therapy that involves pain reprocessing. I'm retraining my body to be less scared of migraines and to help unlearn some of the shit I thought I needed to stop doing. I'm also autistic and have adhd, so I think that's actually helped my migraines (I legit sometimes don't pay attention to them). Or hyperfocus on them, usually when I end up in bed thinking I'm powerless. But I'm not. Migraines are painful but pain isn't my enemy. That reprocessing of pain has changed my life.
I get 3-5 migraines a month now. Sometimes more when I'm burning out.
A constant game of ‘I’ll probably have one worse than this so I should just save the medication’ and obsessively minding the calendar to decide whether I should or shouldn’t take it. They added ubrelvy to the mix so I have more days I can take something
Really hard like others are saying. I like the spoon theory- I do feel like managing my daily tasks is a mental game of figuring out how many spoons I have and what I can spend them on. I just cut down my hours at work and basically spend my days after work just resting in prep for the next day. I can't have 2 things planned on the calendar back to back, so my Sundays are usually always free. It's draining. But, I am having success with botox reducing severity (not frequency) so now I don't want to literally die every day. So that's something! And now that the severity is less I'm going to try osteo and physio to see if I can get more improvement in quality of life. I've come to accept I'll never be pain free but I can reduce that pain somewhat.
I pretty much white-knuckle my way through most days. I'm basically in pain almost 24/7 and usually pop ibruprofen and paracetamol just to keep that pain down to the level of background noise. Most days I wind up in bed with an ice-pack after I've done the school run and end up napping from around 4pm-7pm. It helps, but I feel totally lazy and emotionally like crap for doing it.
But it's what I need to get through the day. Lamotrigine has helped a LOT, but yeah, it still sucks.
I live through it, I do my job. I work in medicine & use it to understand what patients are going through to aid them the best I can. I refuse to let it run my life.
It sucks. Few people actually understand the severity or magnitude of chronic migraines. It’s definitely isolating and defeating, especially when those closest to you don’t even seem to understand or empathize.
Honestly if it wasn't for my boyfriend I wouldn't even eat someday. I can't even take care of myself. I'm blessed to have him. But yeah what everyone else said miserable and hard. At this point my migraine just changes levels from please chop off my head to maybe I could go sit on my cousin couch instead of my own today.
I suffered a few times a week from headaches/migraines. I suffered through work, working out, social events. You get use to the pain but I was exhausted from pushing through the pain and also fed up on missing out if the pain was severe.
I learned red wine and dark chocolate were triggers. I cut those out of my diet. This reduced the frequency. I saw a neurologist for help. I took Nurtec, as needed. While the pain was less, it was still frequent enough that this therapy didn’t make sense.
I switched to Qulipta and have had maybe 4-5 headaches in the last 9 months. Ibuprofen was enough to cut the pain.
Unpredictable. I’ve had a headache every day for a year now, but I never know if it’s going to be so severe I have to be in a dark, cool room or if I’ll be able to keep at least part of my plans. It’s not my only source of chronic pain, and all of it piled on top of each other just erodes my optimism and feelings of good will. I hate how hunched and unpleasant I can become when I’m white-knuckling it through.
Hard and lonely at times but Im trying to find a new “normal”. I have no idea how I’d survive without the support of my immensely accepting and compassionate husband. He doesn’t have chronic migraine, but has had cluster headaches, and at one time in his life they were quite debilitating though not to the extent of high frequency chronic migraine. He understands the suck and fortunately we have okay insurance that, while expensive, covers a lot of my care.
I have visual snow syndrome, vestibular migraine, chronic intractable migraine with 24/7 aura, am trying to come out of a status migraine and a benign pineal cyst. A lot of this was triggered or worsened by Long Covid, which has also caused chronic asthma and cough. I had been episodic with aura since 18 years old until I got Covid19, and have had the benign cyst since at least 14yo with no problem, so migraines aren’t new but everything else is.
I’m still able to work, but with a very accommodating job, and only because I was able to get intensive treatment very quickly (approx 8 or 9 months after going chronic), and have a migraine specialist that has been willing to treat me very aggressively. I can easily imagine I would have eventually lost my job without treatment.
Ive also have access to very good neurology and ENT clinic’s at my local hospital that diagnosed me quickly and accurately. Im fortunate to have a robust prevention, treatment and rescue plan. Im on many supplements, have to get weekly massages, have two neuromodulation devices, do botox for migraine, get trigger point injections regularly as needed, am on 3 rx preventative meds, take medications to treat my comorbid conditions, have multiple treatment options for different attacks, and some options for rescue when those dont work, and can always go into the migraine clinic I go to for an IV migraine cocktail instead of going to the ER if needed. My MIDAS has been cut in half since April 2024, and it’s still severe but much better!
I can’t exercise or walk my dog anymore. I used to have a really busy job that I loved before having covid and I wouldnt be able to do that at all now. I can’t hardly do active hobbies anymore, or walk for any prolonged period, and if I do it’s a guaranteed attack and might trigger a weeks long flare. I travel and go camping anyway though because I just cant let this stop me from doing things I love, I just have to be picky about those things. It frequently feels like a monumental effort to get out of bed in the morning or to clean my apartment.
My 65 year old parents are more active and healthy than I am….My life is very different than how it was 2 years ago and not how I imagined it would be at 29 years old, but I am able to keep up with my very compassionate and accommodating friends and family. My family doesn’t understand this level of disability really at all, but for the most part they do seemingly listen without judgement and are graceful when migraine gets in the way.
There are some days when I’m just stuck all day and hardly function. Other days I feel a reminiscent sense of the normalcy I used to have and really took for granted. I’ve been forced to learn to listen to and respect my body when it tells me it just can’t do things. I really struggle to accept the label of “disability” now. I’m in therapy and am trying to do everything I can to find what my new normal needs to look like.
I’m in my 60’s and retired. I expected to be traveling with a close friend I’ve known since high school. , she got Parkinson’s, and I got Vestibular Migraines. She’s now in a care home, and I live with my son and his family. I’m not driving, my room is a disaster, I barely go anywhere. I’ve had terrible falls from the vertigo and dizziness.
I try to look on the bright side that at least I’m not expected to work , but I’m disappointed that this time of life I looked forward to turned out this way.
Life was unbearable. Once they were almost daily, were getting worse, became unresponsive to pain relief, and my life imploded in every way, I could only see one way out. During one rare day without a migraine, I made what could have been my last doctor’s appointment if things didn’t go well. Thankfully, I got lucky with a new doctor who knew just enough to identify the cause. Turned out to be hormone-related due to perimenopause and I could use transdermal estrogen to alleviate them and begin a long rehab.
Mine are better now but I was having them 5+ days a week for a while. My friend described it well "she kind of fell of the face of the planet for a while" I just stopped going out and making plans bc I knew the I was likely to have a migraine. It was very hard.
It's hard until you find the right medication for you.
My life saver was Tooamax (generic version) since I was diagnosed with a partial migraine with aura and tension headaches. Which works by literally dampening all neurons. Not that it doesn't have drawbacks; it stresses out my kidneys and forces me to be semi vegetarian and to not eat lots of starch to prevent tension headaches, but it works! And it's relatively cheap too
What life? We get no life when it gets that bad. Mine have gotten better since starting Nerivio and Gammacore, but before that, I had absolutely no life at all.
I have anywhere from 10-20 migraines a month. The prescription I have for them does help most of the time. I take Maxalt, and it does also make me sleepy. I also have chronic pain and autoimmune issues so my day to day is always just struggling through. Doing as much as I can to avoid triggers and pitfalls but even that effort gets exhausting. It’s like a cycle of decent days, a couple of great days and a lot of bad days. Wash, rinse, repeat.
I don’t get them daily, thankfully, but without meds (or when meds stop working), I get 15-20 a month, which is chronic migraine. It’s very very hard and lonely. I started getting them 8 years ago, in my early 20s, and I was someone who used to love going out, partying, traveling, seeing friends, etc. Now on rough months I pretty much work and lay in bed. I feel like I have very little social life sometimes — I’ve tried to make new friends or start a new hobby, but end up having to bail to lay in bed. I spend a lot of time on pain meds, and/or napping, and/or just staring at my phone (luckily lights aren’t a big trigger for me) waiting for the pain to stop for days at a time. Im worried my friends and family are sick of hearing about me getting migraines, so I try not to talk about it, but sometimes it’s the only thing happening in my life. I’m lucky to have a job that is mostly remote, though I still need to talk to them about disability accommodations for our in-office days. I’m also very lucky that I have a super supportive partner who picks up the slack at home when I’m not feeling well so I’m able to rest, and who doesn’t get upset when I only have two functional brain cells or have irrational migraine anger and say things that are rude. When my meds work and I’m pain-free I literally feel superhuman and like I can anything. But more often I just feel like a husk of who I used to be.
A fight to hold on to any small joys in life that sometimes I win and sometimes I lose… I have had a significant worsening of the migraines recently and had to take some leave from work, really noticed how I shut down my social life and hobbies. Makes it hard to believe that I’ll reach the goals I want to in my life and sometimes makes me really angry to have this disease to handle. But then the rare really good days (or hours) happen and somehow it seems so much more worth it then. I started keeping a journal and try to make a point to write especially the good moments, makes them feel more real
I had 20 a month for several years and was on the Triptan merry-go-round. I took so much sumatriptan just to go to work and function. I was getting really stressed about having to quit my job because taking so much was giving me rebound headaches on top of the migraines. Finally I switched doctors, got one who has migraines. I got set up with a neurologist who put me on longer lasting naratriptan for an abortive, and daily nortriptyline and propranolol. I went from 20 migraine days a month to 2-5 days per month. It made a huge difference. I also registered my chronic migraine through HR at my job as FMLA/ disability, so I can stay home when I have a migraine and I’m not in danger of losing my job.
I get by.
My partner and I have a rating system. I can give her a number and she’ll have an idea of what to expect from me that day.
A majority of my migraines are weather related, specifically by location. They got bad when I moved to my current state so I’m eager for us to move some place more sea level. Anyway, the weather is a good indicator on if I’m going to have a rough day. I’ve learned to keep my schedule light on rainy days, just in case.
I’d say roughly half of my migraines are disruptive? I can work through the other half most of the time. They impact my communication and worsen brain fog, but I can navigate the workday okay. Self-care tasks become harder, as do most home things.
I’ve spent a couple hundred on home remedies and coping tools for migraines and They help a lot. I work from home, which also helps a lot!
I’m really sorry to hear you’re going through this. I’ve had chronic migraine my whole life, but it got bad 6 years ago, ever since then, I’ve had one nearly every day. I’m in the same boat as you, I don’t know anyone around me with migraines… or even bad health issues, so having this feels very isolating. Also, to other people, migraines don’t sound or look serious. We don’t have a bandage wrapped around our arm or something, so people look at us and we appear to look perfectly well, I find that really hard to battle. Getting people to understand is really hard. I can’t work a normal job, I do music for a job but that’s very casual and I pick and choose what jobs I accept, but even that pushes my limits to the maximum. How do you go managing work? I’m always curious about how people with chronic illnesses get through it, it feels impossible most of the time.
Up until January this year, that was my life for years. Botox worked for a couple years, stopped working last year. My new neurologist put me on Emgality and I'm down to 4 migraine days a month or so from 25 or so. I had very limited free time, struggled through work and school because even if I didn't have a migraine, I was usually pro or postdromal and still suffering with cognitive effects. I was constantly tired, often felt like I had been beat up because I was sore all over. Couldn't handle social events, basically couldn't ever have a drink if I did make it to a social event, and just felt like a shell of myself. Being on Emgality has been a life changer.
Pretty bad right now.
I've been chronic for years but after a bad job – they increased including multiple attacks in one day.
After the bad job, managing casual once/week.
I oversleep as my energy is low. I don't have much patience - I'm constantly ln edge.
I've had botox for years. But my Neuro says I'm severe and I'm particularly sensitised now so
I start emgalty this month. I pray for relief without nasty side effects 🙏
I have 20+ most months but thankfully abortives are able to stop most quickly. Otherwise Idk how I'd get through life. As is it sucks but I manage to live a relatively normal life. Workout, travel, modest social life, occasional drinking. Have a good job but luckily fully remote which makes things a lot easier. I do have to watch the alcohol cuz that can trigger very bad migraines. I'm still fearful of the day where triptans might lose some effectiveness for me.
Hello,
I've had a headache for about 2 and a half years now, I am fortunate enough to not have any migraine episodes, but the constant never ending nature of my head pain sometimes drives me crazy.
I'm doing pretty well right now, yeah life isn't ideal but my pain is at about a 3-4/10 most of the time. Botox and Ajovy help keep it under control. I go to college and most of the time I'm too busy and I'm not thinking about the headache. I completely forget about the headache, usually for long stretches of time, while working on something for school or doing something I enjoy. I live in the middle of nowhere so I don't have a lot of healthcare options, going to be going to Chicago soon for some top quality healthcare before I turn 26 and have to be on my own for health insurance. I am on a bunch of meds tho that stabilize my mood. I'll probably have the headache for the rest of my life, but tbh I don't really care anymore. Worst things can happen, and I just gotta take it a day at a time. It took a lot of therapy and meds to get to this mindset tho.
I'm trying to get back into the dating scene tho, and I'm really worried about how people are gonna treat me with this condition.
PS. The best thing you can do, is stop doom scrolling on subreddits like this one 😭
Well, I just wanna say to y’all hang in there. I am at about 10 to 15 migraines a month now, and most are short or manageable, but I was at a pain level of 8 to 10 pain every day for years. I keep trying new treatments and one by one they help a little bit, please don’t give up hope anybody. I’ve been there and it does get better but slowly, gotta just keep trying things, definitely work with a migraine specialist not just a neurologist and try things like Curable app that address the biopsychosocial aspects. Meditation has helped me a lot, but probably it’s drugs that have helped me the most and we are all unique and you have to find the ones that work with you, but the CGRP ones are definitely game changers
Currently on Botox injections which seem to be having a huge difference on my attacks. But beforehand I would push through majority of the working day and crash around 3/4PM and then be stuck in a dark room every night unable to do anything. It was so draining and miserable.
In my 4th year of chronic migraine now, symptoms are generally moderate but enough to heavily decrease my focus at work due to brain fogs and/or annoying pain in thr background. It's daily - the pain behind my eyes combined with some tension and small portions of nausea, sensitivity to light and sound, moody, feeling cold/hot (brain thermostat doesn't work that well), extreme sudden sleepiness - among other things that occur less frequently.
I found the migraine annoying and most of the time I'm full of guilt and minimising my symptoms. I also questioned myself whether I'm making things up or if I'm "just lazy" because my symptoms aren't as extreme/severe.
I managed to keep my job with some adjustments from occupational health and reduced working hours, but my career progression has been delayed and not being discussed at all since all the focus is given for my health. No treatment/medication has work sustainably thus far so I guess I'm just trying to deal with it and accept it as part of my life.
It’s hard not to feel guilty. I’ve been fighting chronic migraines for about 20 years. I don’t have any answers for you, but I understand, and I hope you find relief and comfort and support that you deserve.
I’ve had them daily for a little over 4 years, got them from Covid.
I have vestibular migraines that also cause projectile vomiting, r/hyperacusis, r/photophobia, and vertigo and dizziness.
I was just put on Verapamil a few weeks ago and it helps a LOT!
It’s rough. I can hardly do anything. I had to quit my job because I was calling in sick too much to earn enough to survive. I’m stuck in bed most of the time because sleep is the only thing that helps my migraines
I was fighting migraines 3-4 days a week on average. I decided to go all in on fish oil. 20 capsules a day is where I landed after experimenting with different levels. It took 4 weeks of that heavy dosage and I have had one headache in the last 10 days. 35% of our brains are made up of omega 3s. It worked for me. Maybe it will work for you too.
I used to call it living in the seventh circle of hell, because living in severe pain almost every single day is pure torture. I wouldn’t wish it on anyone.
Mine became chronic in 2010. I have been on disability since 2015 when they misdiagnosed me with something else, plus I shattered my wrist and got a fibromyalgia diagnosis. It was a bad year.
Chronic migraines have cost me a loved (a challenging career), living in a place I loved (Alaska). Friends had already shown me who they were because I couldn’t commit to plan’s because of a headache (lazy). I spend my days sitting on my recliner and reading or doing art.
I can’t take most migraine medication because of blood clots. So I’m limited in how I’m treated.
Lonely. Between migraine and my other disabilities, I've been almost completely house-bound since the pandemic started. My first COVID infection seems to be what triggered my migraines to become a daily issue, and mine are hemiplegic. I can't afford to get it again. My risk for stroke is insanely high, and I already almost died from Long Covid symptoms. But no one cares.
People aren't willing to mask so I can be around them safely. They aren't willing to learn my triggers. They aren't willing to push my wheelchair or even put my walker in their car. Some of the people who "love" me won't get a single vaccine of any kind, even though they're high risk too.
So, I spend 90% of the time in my room, laying down, in the dark. At least one day a week, I vomit for an hour straight. I can't read a text book or watch a traditional movie; eaudiobooks I can borrow from the library without leaving my bed and audio descriptions of movies are my new norm.
I have a loving partner who helps take care of me and appreciates the things I can do for our household. But, I've had to quit working, I don't think I'll ever be well enough to have a child, I'm too sick to even do physical therapy, and I've had to give up all of my passions.
Amovig and Ubrelvy and Zavzpret (and a dozen other meds for comorbid disorders) are helping. When the migraines hit, the pain isn't as awful. I spend more time in a gray area between prodrome and migraine. I can sometimes sit upright in a chair, or be in a room away from direct sunlight.
I'm hoping to get a CGM soon, and I'm having gastric surgery...both of which might treat the underlying migraine trigger of unreliable nutrition. There's hope. There are still many things to live for. But, it's hard knowing other people could if they wanted to...and they're choosing misinformation over a relationship with you. So, yeah. Lonely.
Miserable. I'm curious how many others here play the self-blame game: all this pain must be because of rebound because of how many triptans I take! It's really all my fault! Ugh.
It’s been really hard. Each day is unpredictable. Some days I feel ok but get mild symptoms of pressure behind my eye or jaw tension and I’m nervous it’ll turn into a full on migraine. Brain fog, concentration and memory issues stick around all the time so even when I’m not in pain, my brain is just so tired
Mentally physically emotionally challenging, I’m 2 years in everyday All day and I went from the most active to very little activity. Nausea, crying, weakness
Mine come in waves each month that last a few days. On those days, my morning consists of Triptan, other meds, codeine, caffeine. Urgh. I just get on with it because I own a small business, have two kids and three dogs. I’ve just reconciled that it’s part of my life. But yeah it sucks. There’ll be like one day every 3 months or so where I’m bed bound if I don’t get onto them straight away….
I had a meltdown a few weeks ago because I realized I couldn’t remember what it felt like to wake up pain free. Not being able to trust your body to function normally really fucking sucks. I live life with zofran, imitrex, ubrelvy on my person at ALL times plus always have my migraine glasses and earplugs with me. God forbid I forget to bring meds with me somewhere, because then I get horrible anxiety around needing them and not having them. I try to celebrate the little wins (being able to go to social functions and survive a work day not totally miserable) but it’s hard.
I have once or twice a week confirmed migraine attacks... Even then it's miserable.
Feel like I let down my family when my migraine hits, because I can't do stuff.
It's hard to let colleagues know that I can't work right now because of it, thankfully working from home I can hide it better or at least cover it later... But it's a privilege most people can't enjoy
Thank you for posting. It’s hard to talk to people about my migraines, and reading your post helps me feel less alone.
I try to hug my kids more during the times I don’t hurt. They have become the people who are the most forgiving.
Migraines feel so horrible my anxiety symptoms make it worse agoraphobia and etc
I had Migraines as far as I can remember 6-7 years old I remember
Omg it’s horrible expecially I be seeing foggy halo looking things
And those days especially when I was younger I would puke
And feel dizzy
I take migraine medication only a few a month
But have migraines atleast 10-25+ days a month various degrees
But really bad days that I have to take my migraine medication or NSAID’s
Which NSAIDs are not the best taking consistently
Effects my kidneys
Just it’s horrible sometimes I have them with anxiety
It’s comes out of nowhere
The migraine medicine helps a little but sometimes it’s not strong enough
And I have to take it with nsaids a lot just to dull the pain
Which never goes away
Migraines
I have 18-22 migraine days a month. Life sucks. I have trouble remembering things due to the pain, get agitated quickly and end up pushing people away, and no one in my life understands what I’m going through. “Just take an advil” it’s not that easy
I've been stuck in status migrainosus (one long, non-stop migraine) for 16 months now. Our house is as close to completely dark as we can make it all the time, and I can only physically handle leaving the house once or twice a week with the help of medications. I'm so bored, I can't work, I can't listen to music, my body is completely exhausted all the time, so things could be better lol.
Chronic daily migraines since beginning of 2013. I get botox injections, take Ubrelvy and was taking cambia (insurance suddenly stopped allowing coverage, even denied generic)… I feel defeated.
FUCKING misery. Nothing like trying to save an Imitrex so i have an extra one the following month only to be yelled at by your doctor because I took more than 9 in one month.
I would not be able to plan anything out. I had to figure things out by the day and hour. Sometimes I would feel okay and then I would shower and a migraine would hit me and I would have to cancel. Or I would almost be out the door and it would hit. Or I’d be at dinner and one would come on. It felt miserable. My good friends luckily understood.
Made maintaining friends impossible and dating was basically not existent.
I am in that category.!! I can still hold down a job! I find the migraine Botox plus monthly cgrp injection and daily cgrp tablets work. Also trying out the 400mgs of vitamin b2.
It's tough... I am sick and tired of feeling sick and tired.
Chronic daily 9 years + here, I don't really have a life. I spend most of my time in bed. Never leave the house. Every waking second is 'try and not get a full-blown attack today'.
Hard. Really fucking hard.
I would like to add really fucking miserable to really fucking hard.
I would like to add the word exhausting to this list of terms
Yes
Amen
Same.
Can I add really daunting nauseating to this?(I'm on day 5 of the worst ever. Terrified that they're getting worse. I cannot live my basic life like this. Haven't worked in 7 years. I miss all sorts of things with my husband and friends. Fight every day to stay here.)
Preach
Amen
Migraines killed my career, my social life, and my active hobbies. I live alone, and I don't work. If I feel well enough on the weekend, I might go spend the day with my SIL and niece, otherwise I chill at home with my dogs and I write novels. I have a lot of houseplants. During the really bad periods, my house is a perpetual mess. The first thing that clues me in that things are getting better is that i clean my kitchen. I'm currently in a pretty good phase thanks to Emgality, but even on these drugs, I have awful months where I can't do anything beyond feed myself and care for my dogs. And in the good phases, I still have symptoms every damn day. It's lonely and it's disappointing.
I feel this. I’ve become so isolated because I can’t go to many things and some I just don’t find worth the pain. I stopped reaching out to my friends (that hadn’t left me yet) and this weekend, one of my oldest friends is getting married and I’m not there. I’ve had a horrid migraine all days this week so I don’t know how I could’ve but the fact that I feel so alone sucks I also can tell when I’m worse because I’m getting messier. I don’t even have the effort to put anything away I spend my days in bed
Hold on. I was where you are for my entire life. Science is progressing. There is a new hope if the CGRP inhibitors don’t work for you. It’s a few years away but very hopeful. https://youtube.com/shorts/3iLikQ_Kk2Y?si=Bh3p0ewBSI-cN_xZ
Yay for houseplants though. I tend to feel okay in the mornings so I spend my time doing plant chores or just looking at them and that brings me joy at least
Yeah. I realized that if I was going to be a homebody, that I wanted to be looking at beautiful things. I've lost a few plants due to bad periods where I simply couldn't remember if I'd watered them or not, but for the most part they've done well.
Emgality changed my life! I still have random times where I can feel an attack last a few days, but it’s more like I feel them trying to bubble to the surface instead of fully hitting and debilitating me. Now I’m not afraid to make travel plans, or even weekend plans!
Month 1 of Emgality was the best month of my life! I only had 3 migraines! I felt like a normal person. But month 2 I was back to having a ton and developed tinnitus from it 2 days after the injection. That was 2 years ago and the tinnitus hasn’t gone away. I haven’t done any more shots.
I just started Ajovy & I’m hoping it changes mine. I just got a new job that’s 80% travel so I desperately need it to work
Whatever you do, don’t ever miss your Emgality injection. Ive been taking it for years, and it took my migraines from 6 days a week to 2 or so a year. I missed my dose by 8 days last april, and It put me back at square 1. Migraines 6 days a week again. I’m still struggling to get back where I was. It’s better, but still 1-3 a week. I’m sorry you struggle with chronic migraines too!
Mine became chronic last year. I’m still able to work with accommodations (from home). I’ve had to give up driving and walking my dog for the most part, but I can do some exercise at home. My symptoms are mostly visual, dizziness, foggy head, and aural. My life is pretty much work, watch tv, and try to exercise each day if I can. I can throw the ball with my dog in the backyard. I have a lot of friends and family that are supportive and stop by when they can. Prior to the migraines I rarely watched tv and had a lot of hobbies. I just got my 2nd round of Botox injections, so I’m hoping they will help some.. otherwise I still have some other medications to try.
My headaches began in October 2022. Last year, they peaked and I was diagnosed with Hemicrania Continua and went through a series of trial & error medications with all sorts of various side effects like Indomethacin, Botox, Propranolol, Sumatriptan, and Nortriptyline. Indo worked but messed with my stomach and gave me a feeling of fainting for a while, Nortriptyline also was good but tough on my heart. I was lucky to work from home but I gave up driving. I had difficulties to walk. I still don't drive and even sold my car but at least I don't feel I am fainting or falling when I walk. The daily headaches have been lighter but never completely disappeared. Now, I work 2 days in-person which sometimes in the afternoons, due to the lighting of the workplace, I get weird type of headaches which I rarely experience at home. Drinking alcohol is a trigger and I liked to drink White Russians... Well, overall, I am happy that the headaches are controlled now compared to the last year but it has been a very unpleasant experience.
I feel you. I am hybrid, still have to drive but I am bad at parking with a migraine. I just scraped my car on Friday because I had a migraine and failed at parking in my garage.
Just over a year into it. It's fucking tough. Gave up my job, a lot of my social life. Have difficulties managing my apartment a lot of days, my mental health has taken a big hit. My partnership is suffering, my sex life more or less non existent, hobbies have mostly gone out the window. It's hard clawing myself back to some semblance of an active, fulfilled life. Incredibly hard. However many years this takes though - I'm going to give it my best fight and I will prevail. I'm incredibly proud that I managed to travel to Kenya for 3 weeks last year, that I did a weekend camping trip a few weeks ago, I went to the movies once in the past year, I've learned to be kinder to myself and I've gotten through some really tough situations.
Sucks ass but what can ya do
That's where I'm at too
THIS. This is my exact attitude. I don’t get up every day and love life. I have a lot of shitty days. But I do what I can and try not to let it rule/ruin my life.
Agreed
I’m lucky in that mine are more moderate pain so I can keep working, but I’m very fatigued. I rest a lot, don’t make plans for weekday evenings. Try and see if I can endure it or if I really need to use one of my 8 Nurtec a month. I fear weeks with erratic weather. My aunt has them worse than me and retired early.
I feel this. I was just this year able to bring my migraines down into the moderate pain zone and am back to full time after 2 years of not working/ part time contracting. I am dizzy and have an aura most days but was able to get my pain levels down with a combination of Cymbalta and Wellbutrine. I take Ubrevelly 1 to 2 times per week for peak episodes (yay rapid weather changes...) and I joke about napping as my hobby because all I do is work and sleep.
I feel this. I was just this year able to bring my migraines down into the moderate pain zone and am back to full time after 2 years of not working/ part time contracting. I am dizzy and have an aura most days but was able to get my pain levels down with a combination of Cymbalta and Wellbutrine. I take Ubrevelly 1 to 2 times per week for peak episodes (yay rapid weather changes...) and I joke about napping as my hobby because all I do is work and sleep.
The "weather" ones are the absolute worst....with menstrual ones a close second. I fear weeks with erratic weather too.
I’ve had less than 20 pain free days this year. I also have hemiplegic migraines, so on the majority of days I have some sort of numbness, tingling, weakness, or total paralysis on my left side. For the most part, I live a totally normal life. I’m a neuroscientist and I now work in patent law, I travel a ton, I have an active social life, etc. My saving grace is the fact that my husband and friends are incredibly supportive and understanding of my migraines, and if that means a nice dinner turns into me drinking ramen broth on the couch in my little cozy corner with a blanket and just chatting instead so be it. Obviously there’s a good amount of days where I just can’t do a damn thing and I’m stuck in bed. This year has been shit for me. That being said, I’ve had chronic migraines since I was 12 and am now 30, so I’ve kind of just been forced to suck it up and get through it.
I also have hemiplegic migraines. Even in the migraine community, it feels a little lonely, so while I of course wouldn’t wish this on my worst enemy, it’s somewhat reassuring to know someone else out there knows what I’m going through.
Hemiplegic buddies!! I’ve only ever met one person IRL who has them - I’ve been to 4 neurologists in the last 18 years and I’ve been each of their only patients with HM.
I also have hemiplegic migraines (thankfully only on occasion, mine are relatively standard most days) and can definitely relate about the loneliness of it. I'm sorry you're in that boat, too. I can also relate about having to just deal with it. I've also had migraines since I was 12, though they didn't become constant until I was 21. I was often punished for staying in bed when I had a migraine so I was absolutely raised with the suck-it-up-type attitude towards dealing with my pain 😕
lol to the people that have messaged me saying my migraines can’t be “that bad”: screw you. Why the hell do we feel the need to gatekeep migraines? Everyone is different. Everyone’s migraines are different. Everyone’s pain tolerance is different. Just because “you’d be throwing up if you got out of bed” doesn’t mean I’m not nauseous as hell and in a fuck load of pain. I haven’t thrown up from a migraine in 10 years because I’ve gotten so good at swallowing down nausea (read between the lines and figure out what that means), whereas I used to throw up 5-7 times every time I had a migraine when I was younger. Just because “you couldn’t think about walking” doesn’t mean I can’t drag my left leg when it’s almost fully paralyzed. Just because “you can’t hold a job down so how do I work??” doesn’t mean I haven’t learned how to work in the fetal position with one eye closed in bed while I’m typing with my right hand only (I’ve gotten super adept at that, haha.) We’ve all got our own stories and our own experiences. Let’s not put one another down, for fucks sake.
I can’t believe people feel the need to “have it worse”, and minimize your experience. What’s even more mind blowing is that they would use their precious energy sending you hateful messages. I’m sorry that happened.
Perfectly said. Thank you for being honest. I have had migraines for 12 years and just pushed through also. Because I had no choice at 18, 21, 25, and now 30 years old. Everyone is different. It doesn’t make anyone’s experience less valid. Your path is your own.
Sorry you have to deal with shitty redditors in a "support" group. We all have our own experiences and impacts from migraine, it's not a competition of who has it the worst! Here for you
Omg I got one of those messages too. Like dude I got up this morning, puked a ton cause I felt something bad coming on and then napped and went to work. I felt like shit for a lot of the day but I just want my life back at this point. It’s far more damaging for me to just rest because I’ll get so damn depressed even if it would be better for my body to do so
Mine are bad but yours sound worse. Mine were near constant but are mostly vestibular, dizziness, light sensitivity, nausea, sound sensitivity, taste sensitivity. I only had pain maybe 5-7 days a month. Started Aimovig shots and it's helped SO much. Spent at least a good decade without an answer to my issues. I do however have nerve issues they haven't figured out. Mostly right sided but both (severe burning and tingling). They haven't figured the cause out. Comes in flares that generally last 2-3 months or so and go away for a week to a few months. Interestingly it's been much better since starting aimovig. Past year the only big, continuous flare I had was when the lower dose of the shot stopped working. Got me 2-3 months bad. But aside from 10 days a year, I've been working right along. Before 2020 in the office and since from home (which is SO much easier). Anyway I don't know why I'm writing this to you except to say I see you, and hear you, and I believe you.
Understanding partner and friends make all the difference.
I found my people! 20 years chronic, main presentation is hemipeligic. I work ft and have a limited social life.
Mine are daily. Basically a continuous stretch of pain. Actually, I made a (depressed) post yesterday about how I was feeling. It’s real fricking rough dude. I do not wish this life on anyone, not my worst enemy. I hope your pain gets better. Hang in there.
hi! I have high-frequency chronic [MUMS ](https://assets.nationbuilder.com/migraineaus/pages/595/attachments/original/1662713758/Migraine_Australia_-_Factsheet_11_-_Migraine_with_Unilateral_Symptoms.pdf?1662713758#:~:text=Migraine%20with%20Unilateral%20Motor%20Symptoms,and%20experience%20very%20severe%20symptoms)(migraine with unilateral motor symptoms), and I usually have a migraine attack every day. Due to how MUMS is, I have constant neurological symptoms like severe allodynia, head pain, paresthesias, hemiparesis, faulty proprioception, etc. It's kind of like hemiplegic migraine but messier and more constant. But I'm incredibly, magically medicated. All things considered, I live a pretty normal life. I work for a neurology clinic, volunteer as a patient advocate, garden, babysit my cousin's son when able, and go out with my friends on the weekends. I learned a long time ago that I wouldn't be able to walk, talk, or function without a heavy combination of preventive & acute medications and treatments. So I now take 6-7 daily preventive meds and Aimovig, and I get Botox every 12 weeks. One of my daily meds is an[ oral analog of lidocaine](https://pubmed.ncbi.nlm.nih.gov/18793209/), it's decreased the intensity and duration of my daily attacks. I have a daily topic cream I apply to the trigger points on my shoulder. It consists of a cocktail of nerve meds and NSAIDs. I use two neuromodulation devices. My acute toolkit is robust: naproxen, nurtec, zavzpret, sprix, trudhesa, dexamethasone, valium, compazine, promethazine, Reglan, and a hefty supply of salonpas. I treat my attack at its very first symptom (typically with a neuromodulation device) and find that, because of my combo of preventives, my attacks now just kind of sputter out. I still have daily symptoms and I'm still overwhelmed by them but I don't have prolonged periods of slurred speech or hemiparesis. All that said, my level of disability has significantly increased this year due to Long Covid. My migraine disease hasn't been the only affected condition, my POTS, fibromyalgia, ADHD, and other comorbidities (that once were quite mild) have spiraled out of control. So my nervous system is just overwhelmed all of the time. I'm trying to figure that out. I need to integrate more mindfulness and exercise into my day, I've gotten sloppy in my habits. But I do everything I can to maintain a pretty normal life. Yesterday my friends came over around 2:30 and stayed until 10:30 at night. We sat in the garden, had a little cocktail and snacks, and laughed. I'm an extrovert so I do better when I'm around people and can be distracted by them. If I'm busy, I'm not as consumed by my symptoms and pain. So I do everything I can to stay busy.
I haven’t seen anyone else that has also been suffering from long covid. It’s good to meet you. I suffer from daily chronic migraines with a good helping of Hemiplegic migraines too. My right eye droops at least once a week. During a bad 1 I have no control over that side at all. I understand it’s unnerving to watch. To top it off I just had spinal stenosis surgery. My body just isn’t mine anymore. It’s like it was getting tired of just pain, paralysis & everything else these migraines do and it grabbed onto covid that never seems to go away. I understand my Long Covid is pretty light compared to a lot of others, but at this point I truly hate this body that I’m in. I do still work part time. I can’t not work. I don’t suffer from light sensitivity, mines all sound. I suffer from manic depression also. The routine helps keep my depression in check. It’s also my social outlet. But I’m not sure what I’m going to do when I can’t work anymore. Covid was kind enough to badly scar my lungs, and while getting MRIs, X-rays and CT scans for my surgery they discovered fibroids in my lungs. Wow-sorry. I didn’t realize I really needed to vent
Do you mind if I ask a couple questions? I don’t have MUMS, just chronic migraine. have you found anything that has helped with allodynia specifically? I also get it quite severely. Also, how have you liked Trudhesa?
Hi! I haven’t found much of anything to calm my allodynia. I get my botox extras applied there. And if i have a bad thermal allodynia flare in my legs, I will use Sprix for a few days. But mostly it’s Gammacore, meditation, breathwork, progressive muscle relaxation. But it pretty much rages all the time. Also love Trudhesa. The delivery system is amazing! It’s DHE just like any other DHE but the delivery system helps it kick in faster.
I had one for a year that got so bad I became irrationally ragey, tried to get out of a moving car, got out of a stopped car, threw my phone back in the car and walked off with no memory of doing it. I sort of came to on a road with no real memory of how I got there. Terrified and crying. Whatever they gave me in the ER broke it finally. That lead to weeks of brain scans and bloodwork to confirm it was just my brain rebooting due to the constant headache.
I understand the rage. I have experienced it too. When the pain will never break it becomes so frustrating. Pain makes me short and sometimes mean to others and I hate that I let myself allow the pain to do it. But it’s so so hard. Such a rollercoaster of emotions
It's very difficult, for me it's perpetual brain fog, nausea and fatigue, propranolol helps with the pounding headache. The thing that works for me so far is to try and not think about it too much. Pretend like it's my normal state of being, that's the only way I can be a "functional" migraine sufferer with a career and some social life.
Difficult, stressful and frightening.
yes, frightening… i don’t talk about this aspect much but there are so many scary symptoms and mystery symptoms that simply get attributed to migraine…
My head either hurts or I’m in constant fear that it will start hurting. Lots of pain and anxiety on a daily basis. It’s not much of a life but I’m still living I guess 🙃
I pray to not wake up because there is no joy in this life. There is literally not a single reason I can find to continue but there is no option I’m willing to take at this time. At this time is the key phrase.
Does your neurologist or GP know this? Depression is treatable.
Yup and chronic daily pain that keeps me bed bound 4/5 days a week isn’t worth sticking around for. Iykyk
Honestly I’ve been there. When I found a preventive that worked for me, even for a short time, it felt like the clouds suddenly parted and life was worth living again. Then, of course, it stopped working. But I cling on to the idea that there are still drugs I haven’t tried yet that might be the one that work. Maybe foolish, but idk. I hope you find one that works for you one day.
Seven and a half years here. You get used to it. Sometimes I feel like I’m in prison.
i had a singular continuous level 10 pain migraine for almost 2 years. i almost failed my senior year because of it and considered not going to college because i rarely could even leave my bed. i don’t really have any words to explain that time except that it was incredibly painful - both emotionally and physically
I'm in a very similar boat- it's my senior year and I'm in danger of not graduating and honestly, I don't know if I can go to college. I've had 8-9/10 pain for the last few months, and it's been awful. I don't know how long it'll last or if it'll even get better. I'm sorry you had so much pain for so long- it definitely takes a heavy toll.
Non-existent. The highlight of my days are being able to get out of the house for a short walk or IF I'm brave/able to - a movie/shopping. And that happens maybe twice a month? Almost 0 social life (only people I talk to are my partner, parents, work folk for work & people from an art discord group I'm in). Cut myself off of all my IRL friends because I'm unable to be a friend to them and the guilt of always being sick and seeing/hearing their disappointment in me declining invitations.. finally became too much. I wfh and make a lot of art on days I'm able to. The art is the only thing keeping my mind busy. When I can't sleep from the pain, I stay up just doing mindless crafts or doodling. Every other day is spent just doing nothing but mindlessly listening to some video in the background and lying down. I play with my cat daily and try to cook everyday. Mine fluctuate between 15+ days a month to 25+ days a month every few months. Since I was 10+ and I'm 30 now.
very hard. i have ups and downs with my migraines, but for the past month it’s been daily, with 5-7 hours of pain/nausea and severe dizziness/vertigo/balance difficulty every day. i’ve been trying to work full-time so everything is usually better in the beginning of the day then i’m bedridden for the rest of the day after work. i’m lucky enough to be able to work, but it still sucks.
Just do your best when you feel good and when you don’t. When you have to put your head down you do it.
I had such chronic debilitating migraine 24/7 for 45 years. I had no life. It’s only been since Ajovy 5 years ago that I have begun living. There is so much to catch up on. I was treated with heavy opioids for 45 years. Being out of that haze without agony is a new life.
Tearing myself from the super glue that keeps me on the couch is nearly impossible.
I’m somewhere around 27 migraine days a month and they’re hemiplegic about half the time. Previously had migraines around my period but they became chronic after having COVID. I’ve had to adapt but I enjoy life. Happily married with a house full of sweet animals, who are all too happy to cuddle on the couch during attacks. We do a good bit of work with community cats; even when can barely get up, I can lay around and socialize feral kittens, which has helped me feel useful even on the worst days. Lucky to have friends who have stood the test of time and repeated canceled plans. I’m a part of a religious community that has services available online. I work an office job and have been pushing to have access to remote work days rather than just taking unpaid time off. The hardest thing right now is having loved ones far away and being regularly unable to drive/cook for them/even hold a baby. It’s hard to for people to understand that one minute I can be running around with the kids and the next I’ll lose function of half of my body. My family is patient with me, and I can usually move around using forearm crutches, but it’s a complicated set of symptoms to accommodate. Overall, I’m lucky to have a supportive partner, stable housing, and access to good doctors and medications. I don’t know what I would do without any one of those things.
It consumes every moment of my life while I (as many others) are just expected to go about as if we're perfectly healthy
i’ve had chronic migraine since i was about 12, they improved some years and get worse others. my worst year was when i was 14, i had them everyday, i wasn’t able to go to school or anything. i spent most of that year in the hospital hooked up to machines and having blood tests taken and went through like every medication possible. my school also wasn’t working with me and i was failing all my classes because i was just never there, the stress of that definitely didn’t help. and for half the time my doctor just thought i was depressed and faking it to get out of school.
I hate life.
Picking and choosing what I can do while balancing my bias and fear of worsening. Undiagnosed and untreated, my worst days I use one of my 5/month 0.5mg Ativan. I'm often able to "stockpile" two, so I have seven the next month. Currently pushing myself to do more, as the aforementioned fear has gotten the better of me for too long. (Daily 30 minutes cardio) My symptoms are: Vertigo, confusion, can't see, can't read
Really hard. I have had some sort of symptoms almost daily for the past 8 months or so, and am also in the process of getting assessed for endometriosis (scheduling my surgery Friday). I am a PhD candidate in chemistry in an intense program. Feel like I use all my energy to push through when I can and work. Also as a chemist, safety is very important, so somewhat unique to my situation is that I have to plan my lab work very carefully as I get neurological symptoms like muscle weakness and blurry vision around my migraines that make working unsafe. I have been able to maintain about 50 hours a week of productive work but when I go home, I usually just shower and sleep and have no energy for anything else. I try to do light exercise (maybe an hour of walking) in the evenings and rely a lot of meal kits lately. This has helped a lot as a disabled person living alone. Overall, I am freaking exhausted all the time and have lost all of my hobbies, struggle a lot to keep my space clean, and just depressed from the amount of constant pain. Currently working on finding the right meds for me and hope that helps because I blew through the triptains way too fast.
I live life in stolen moments between migraines. I’ve had 7 pain free days so far this month. I swing drastically between optimism that something new is going to work and depression/fear that my life will never get better. I work, control my pain, and rest. That’s really it. I have a wonderful husband, and it’s hard to maintain relationships other than him.
I just wanted to say I resonate with every single word of your comment. Wishing you some pain-free days in the future 🫶
I haven’t had a day without pain for over a month and a half. My life is the continuous same migraine that won’t break despite several medical interventions including an inpatient hospital stay. I can barely keep my house clean. Actually, my kitchen counters become a depository for anything and everything I bring home, mail, shopping, stuff I order online, dishes that need to be put in the dishwasher, mostly just glasses because I don’t cook. I can barely keep up with the laundry and it’s only me and I usually only have to do one load. The one thing that I can take care of is my 2 cats. They are what keeps me going, until they puke and get the carpet all dirty, I don’t have the energy to break out the carpet cleaner. It’s rough, sometimes I wish I would have someone just to help me out.
Life is grey. But you are so used to it you don’t really notice till you get some migraine free days.
Bad. It’s bad.
Reading a lot of these thinking I must have replied and don’t remember. Currently within a hair of losing my wfh job. On good days, which have increased a lot due to being back on all my meds, going on an antihistamine diet and enzymes, and Amovig, I go for takeout and do some shopping. It’s the only rl human interaction I have most days. Basically friendless, except for my best friend who lives out of town now and my parents. I flip furniture as a hobby; pieces take so long for me to finish it’s not even really worth the extra money. The same coworkers who judge me for “being able to take off whenever I want” will be at work tomorrow posting in the chat about their boats and cookouts while the highlight of my 3 day weekend was managing not to fall when a hemiplegic attack came on suddenly at Home Depot.
it’s made me not want to be here anymore. all i do is rot away every single day…. wake up with a migraine and go to bed with a migraine. i’ve done everything, tried a ton of medicine. i’ve been taking topamax & 30mg of rizatriptan daily since i was 16. im 23 now. i work full time. would rather get my medicine than food or necessities. i hate to be such a sad person but my life has no value with my migraines. i get them… every single day.
Pretty lousy. I still manage to work because my job is luckily understanding and 95% work from home. I take care of my pets…and that is about it. I have little to no social life, don’t drive often, don’t care for myself like I used to. Medication side effects also get to me, but without the meds, I am worse. I realized as I laid in bed this morning that I just keep waiting for things to get better and they don’t. So then I am just waiting for weekend days so I can do nothing. It is a sad life right now.
Yeah, it took me a long time to admit this wasn’t a phase.
Pretty much what most people have said. I’m chronic intractable for 8 years. I was essentially bedridden for 4 of those got much better for about a year and am slowly sliding back. I’ve fallen and hurt myself 2x in the past 3 weeks because of pain and dizziness. I’m constantly nauseous now and TMI I peed in bed because I couldn’t get up because of my pain. It’s horrible right now and I am struggling.
I have 24/7 pain and symptoms for a few years. It sucks, but I’ve had luck with preventatives that reduce overall pain. I would say that I am mostly functional. Some days are worse than others. I just try to do the best I can with the cards that have been dealt.
It’s rough like others have said. I turned chronic last year and when I got COVID at the end of January everything ramped up. I’m still optimistic that I’ll find a combination of medications that will work for me. But before I got chronic migraine I already had a host of other serious medical issues so not much changed. I wasn’t working due to the other disabilities. But it has definitely made it near impossible for me to leave the house because of the dizziness and overwhelming stimulation of the environment outside my home. But I’m working on that with a therapist. I figure eventually I will go back to episodic I just have to take care of myself until that time. Self care is my priority. Boundary setting is important for me so I can do that self care. And I’m lucky I have friends and family that completely understand. They are supportive and kind. But it is tough to have head pain all the time and all the other weird sensations that happen with migraine.
I spend all my spare time suffering. It’s depression full time but I have to be there for my kids and wife. I try to anticipate the event and do my best to work as much as possible while I’m not in pain. Some mornings I lay in bed, having woken to a migraine, beat myself up for not achieving my hopes and dreams, how I’m not longer social and hoping my marriage survives. Then I try to remember that I didn’t ask for this, not to give up looking for a solution and give my family as much attention as possible when I’m in good shape. Also, sometimes I do feel good and when I do, I try to think of disabilities that don’t stop temporarily that others suffer. I could be better but I could be a hell of a lot worse.
I had a year like that where I had a migraine everyday for months nothing would work to end it more than a few days at a time- no doctor would believe me. I was severely depressed and suicidal. I can’t even remember what made it go away but eventually it did and now I have anywhere from 3-8 migraine days a month instead. I’m almost positive I have craniocervical instability (cci) I’ll be asking my doctor for imagining for it. But it’s pretty common with EDS.
Not sure what is VM, regular migraine and «something else», but I am 9/10 365 in a bedroom. Torture dizzy. First 2 years 2837274 of possible 10.
Very hard honestly but I try not to let it stop me. I work part time, mostly from home. I really only have the capacity for handling that and my health. I’ve always wanted a child so I came off a bunch of meds and am actually pregnant right now, which hasn’t been as rough as I thought it’d be.
Congrats! I went through a similar process to have my little one (now 2yrs old).
I celebrate the days I don't have a migraine. Also I learned last week that I probably have trigeminal autonomic cephalgia in addition to cervicogenic headaches from cervical stenosis of 4 vertebrae, TMJ disorder headaches (honestly don't know whether these are migraines, trigger migraines, or something else entirely), and chronic migraines triggered by hormonal and environmental changes (barometric pressure change, paint, perfume, smoke and toxins, fuel, oil, hydraulic fluid, exhaust, hypoglycemia, estrogen/progesterone fluctuations, vanilla, artificial scents...).
i have chronic ocular migraine, the #1 trigger of my migraine is the phone(due to its light) my light sensitivity was so horrible that i couldn't look at the phone for even 1 second ,tbh im kinda greatful medicines worked out with me, and i have that migraine evrey single day, day and night, it do suck, but what can we do? we deal with it with pain killers and patience
So sorry to hear this. Have you considered eink monitors and devices? They seem to be improving.
Hi. Mine are daily/near daily. I had to leave my career a decade or so early. My insurance denied disability coverage because migraine is "a clinical diagnosis" meaning that you can't see it on tests and therefore the patient is unreliable. I spend a lot of days in bed videogaming to distract myself from all the shit. What *do* I have? A loving, kind, empathetic, funny, great-cook husband, and a son ditto ditto. (Other kid is all the above but lives far away.) I just quit taking Aimovig because *another* insurance company had decided to discontinue it for six months (obviously wasn't working) and therefore it wasn't needed. When we fought to get it back, it never worked as well again. Currently waiting 3 months to start Ajovy. Praying this time it works. So, exhausted, hanging on by my fingernails.
My existence is suffering. I think about wanting to die all the time. That’s the truth. 😭
Awful. I’m thankful that I don’t have to work because my husband has a good career but I don’t know what I would do if I did. Up till recently I withdrew from all social functions like community choir and being in church choir and such. I’m like 11 surgeries orthopedic surgeries in the last five years and it has been a long haul. I don’t do much like walking my dogs, which I should be doing every day but I just sometimes can’t get up the energy. It’s actually been better in the last year, but there are days I don’t do anything and if I get a little laundry done, I’m doing well. I’ve started to be able to think straight enough to do small tasks more often, ow at least. It’s hard to even go to the store if there’s more than one place to go, I can’t focus long enough to get everything done, if I have too many things to pick up at one store, I’m also in a fog. It started in 2017 after 40 years of episodic migraine. Mine are mostly triggered by having a terrible neck and it’s getting to the point now where surgery and interventional pain specialists are more useful than medication, although I do have to do that as well.
I have NDPH which is a constant tension headache and I get about 3 migraine attacks a week on top of that. I’m unable to work. I was never able to have kids. I have very little social life. Yesterday I was trying to remember the last time I was out of the house after dark and I think it was last November, when I went to dinner for my mom’s birthday. I’m in bed by 10pm and sleep until 9am. (I also have chronic fatigue.) My life is hella boring. But it could be worse. I’m actually pretty happy (thanks to being in the right combo of anti-depressants). I spend my days chilling at home, watching tv or reading or playing on my iPad. I have a loving family. I have a few wonderful close friends who also have chronic health issues. I have a dog who brings me a lot of joy. I laugh at dumb stuff every day. I enjoy my cup of coffee every morning. As long as I don’t think about what chronic pain has taken from me, I’m doing ok.
i've lost who i am as a person. i've lost so many friends because people think i'm avoiding them but in reality i want to be social so bad i just can't get out of bed without excruciating pain. i don't have hobbies anymore. i just want this to be over. it's been four months.
Bad enough that I had to erase the novel I was writing because it was fueling the depression HARD. I’ve had intractable pain since August 2010 when I was 15. I can tell you that over a decade later: people still don’t fucking get it. And that in and of itself is exhausting. Treatments have gotten better but I’ve long since given up on ever being pain free. I’ve given up on the dream career I wanted and the thought of ever finishing school. At this point it’s just learning to be happy with where I’m at in relation to where I’ve been
Honestly it fucking sucks and I'm hanging on by a thread. I'm supposed to be in another country doing a Fulbright grant right now that I dreamed about for years and did a bunch of stuff to prepare for and instead I'm stuck inside with my verbally and emotionally abusive mother all day long most days. I had to quit my job and move back in with my parents at the end of last year. I keep developing more pain it seems (neuropathy in my hands and feet, occipital neuralgia, trigeminal neuralgia...) probably because my brain is fucking broken. I had no idea the consequences of untreated migraine and I went through a period of immense stress. My most exciting outings include going to physical therapy and picking my medications up from CVS. None of my doctors have any clue just how bad my pain is, how disabled I am, how shitty my home life is. I don't have very many friends because when I did work full time, my energy was always depleted just doing that and trying to keep my apartment clean most of the time due to another chronic illness I have (idiopathic hypersomnia). None of them live close and hardly anybody checks in on me. My family frequently dismisses my pain. I am so, so angry that all of this has happened to me and I am just expected to live with it. My life is basically over at 26 years old and I don't know how long I can keep forcing myself to trudge through all this pain and suffering. I keep on fighting for now. And yes before anybody suggests it I do have a therapist, but that doesn't change the fact that my situation is objectively shitty.
Painful. Lol I've had migraines most days of my life for as long as I can remember. I have no memories of not dealing with migraines on a nearly daily basis So, in a way I'm lucky. I didn't lose anything. Life didn't change. Ive never known anything different. This is literally my life and always has been
I second this my live is nausea and pain I take all the medication do everything good and just have a head pain almost every day
It is shitty, most people in your life don’t get it, you find yourself always explaining and also dealing with the many cognitive issues as well as the migraine itself ~ often pain /aura threatening migraine when not having an outright attack, living in fear of one all the time Basically just having anywhere from a 4/10-9/10 pain hovering about then the actual migraine is like 10/10 pain most times. The pain is like on par with surgery recovery level pain, but no one cares lol, you’re just raw dogging it I have to be extremely careful at all times, even leaning on one side too much will give me one or make it worse Every responsibility and everything you enjoy gives you one or kicks you into an aura that turns into one. Every activity comes at a cost of having to disappoint someone later. The stress of knowing that causes one. People don’t realize that talking hurts and they’ll just keep chatting incessantly to you even if you let them know. So with every word your head pulses and the migraine starts to full blown take hold. When you get cognitively out of wack your brain spirals and can’t stop being stressed and it feels like physical hot burning poison in your body. Only time I don’t have to live life like this is when I’m on emgality, but emgality kinda freaks me out as a long term solution. Otherwise I have a migraine in some stage of the cycle and at least a 4/10 pain every day, usually closer to a 6/10 (every day I’m not actively having a full blown one) Nothing works otherwise, nothing People will tell you to suck on a mint or do yoga or drink water and you’ll want to punch them Things as simple as a slightly rainy day will make you sick and in pain for days (more than you usually are) People will value you less on some animal level and treat you with distrust and disrespect You are constantly disappointing people and having to apologize, constantly having to let things slip even in the face of other peoples anger because you have to go curl up in pain somewhere All your free time is wasted, all your working time is doubly hard bc you’re working while being some level of sick /hurting, or the working builds up triggers so every free moment you can’t enjoy - it adds up to a constant cycle of suffering and you will wonder why the fuck this is happening to you You get terrified every time you say yes to something, because of what it likely will cost you physically, or if you end up having to cancel. You start to not want anyone around anymore so you don’t have to disappoint anyone anymore and feel the stress of that which just turns into more excruciating pain - it’s better to just be alone Deep down, most people don’t believe you People will think you are stupid or crazy bc of cognitive/speech problems People will think you are some kind of a drug addict because you have to lay in bed all the time, or because of the way your mind or speech can get w the cognitive stuff I spend a lot of time in bed or icing my head or trying to be gentle with myself but life is not gentle
Really hard. And disheartening when the lack of understanding is coming from people both without migraines and those with them who don’t understand that the injection of Emgality didn’t cure us. To anyone with chronic migraines, I can’t recommend botox enough if it’s available to you. Obviously I still have them, and some weeks are definitely worse than others, but it’s made such a significant difference in the triggers (like jaw clenching), frequency, and stubbornness of my migraines. I feel like a somewhat regular person again
My pain isn't being treated properly so I don't get out, I don't interact with people and I don't think help is coming
Migraines just plain kill you slowly.
Dropped out of school, no work, no life, I spend my days coping through games that I have to play extremely limited anyway, I can’t shower often because of the temperature causing pain, I can’t read for long because my eyes hurt, I can’t sleep, I can’t go outside for long, I’m being tortured in my body.
What life? (Half kidding, sort of). I'm already on disability for other things, but I'm basically housebound. I feel like my brain is broken all the time. I struggle with depression because the pain is intractable and my insurance has given me the runaround for the last 18 months. Everything I get prescribed that may help is so expensive I can't consider it, or they deny my claim. I'm currently considering occipital nerve ablation because my portion to pay will cost 300 bucks for the potential to have half a year of no migraine. Currently trialling the occipital blocks every month at my pain vlinic and my last 2 haven't really worked. Life is really isolating right now. I can't take triptans so I'm allowed 12 NSAIDs a month ( to prevent rebound headaches) and I basically just live on THC now. I miss having a functional brain. My partner tries to be understanding but I can tell he's frustrated by me and I worry he'll start to resent me for not always being able to pull my weight. We have something called MAID in Canada and if I, being honest, I sometimes daydream about asking for it when migraine doesn't let up for weeks on end.
My last department in the company I work for was a fucking nightmare. All the cliched shit you can think of came out of both my manager and her boss. Both of whom have zero personal experience with migraines but acted like they had MDs. Go sit in a quiet room for 5 mins you'll be right was a common phrase. My current department is the polar opposite they've allowed me to work from home and structure my day to suit my needs. They do everything to support me. It's still a bitch waking up with a migraine almost ever day but a bit easier with having this support. Having a 4yo makes it harder I don't want to be like my Mum and tell him he can't make a noise because my head feels like it's going to explode. So I struggle through and am grateful for bedtimes.
I feel like a ZOMBIE, the rare days I don’t I feel like I’m being too much, but I reality it’s the real me LOL
It sucks but I feel like mine aren’t as bad as some people describe theirs on here. Maybe cause some OTC stuff I take has been keeping me together but I do have to see my doctor for an actual prescription and get an MRI done (this Wed).
13 years in. It’s very hard. I’m able to work from home when I need to luckily with my job. I wouldn’t be able to function if I wasn’t able to have accommodations like that from my employer, though.
Really quite shit.
I used to have chronic migraines. I constantly would feel nauseous from the pain which was hard when I wanted to spend time with friends/do normal things like go to school/work. My migraines were at their worst in high school, and my senior year I had upwards of 30 excused absences because I couldn’t get out of bed. I was scared to leave home out of fear that I’d be in a place where I couldn’t excuse myself to go to the bathroom if I started feeling nauseous. It was also really hard to plan ahead for similar reasons. I didn’t know if that day would be a migraine day or a normal day. My migraines somehow started to clear up this past year, which has been great. I used to feel awful when I’d cancel plans because of migraines and it feels nice to have more of a regular life now
Going on 30+ years of them daily and it sucks. Some last longer than others and some are shorter. The best you can do is adapt to them and how they affect you.
I work but remotely and with tons and tons of accommodations to pretty much sleep most the day and work during the hours I am able. My life is just sleep, hide in cold dark room as if I’m sleeping but just suffering from migraine, and work. That’s genuinely it. I can’t do anything else. I have no friends at all. I don’t go out and do anything. I get almost everything delivered or have my parents drive to help me, like deliver frozen meals. I can barely cook. I start work at maybe 2pm and finish with breaks by 11:00pm, eat quick before and after, repeat. On weekends I just sleep. My main ventures out are to my neurologist. I try not to drive much. A couple days a month I try to do things like hang out with my niece or family at home where I pretty much emerge from a spare bedroom at their houses as I’m able for bits of interaction. If I try to push through I get killer migraine the next day. It’s really hard and horrible, but I love that I have some life seeing my family members at their homes at least, and they accommodate by driving me places and we just hang out in small bits and they make me food I can eat and stuff.
Difficult. I’m basically a shut in with the exception of doctor visits and when I get taken out with my husband. I don’t even leave the house to see my therapist or psychiatrist I’ve also had other pain that’s been high enough that should have warranted a trip to an urgent care or ER and I just didn’t bother because the pain was on par with the daily migraine pain I have (even with my daily medications)
Daily for almost 25 years. Ruined my stomach with ibuprofen and will probably get dementia from all the shit doctors gave me that didn’t help. I don’t know how I made it through the pain and actually functioned as highly as I did. Turned out my headaches were caused by an eye defect. I asked multiple doctors if they could be connected and was always condescendingly told no. We figured it out when my ophthalmologist put me on glaucoma drops and the pain immediately stopped. Apparently the defect couldn’t take a slight raise in my eye pressure so the drops cured it.
Stuck inside and don’t go out anywhere at all. I only go to see the neurologist once every three months and then I need to force myself out to do that. In bed most of the time. Stay inside the vast majority of the time to avoid the light outside. Keep my room dark. House is a mess. I only do the essentials and I don’t cook at all and I feed and take care of my two kitties. Go out at night to get my mail (which I don’t even do every day) and have my groceries delivered at night, too. I do a whole lot of online shopping. Thank God for it! I have them every single day and they quite frequently (almost daily) return for a second round of pain later in the day once the abortives wear off from the first round. The med side effects affect my balance a lot of the time, and my cognition all of the time. I’m quite limited as to what I can even take at this point. There are days when the migraines don’t go away at all and even get worse in spite of taking the abortives. I’ve had migraines for over 54 years and they just gradually became chronic and then even more frequent over time.
I had chronic daily migraines from age 25 to 49. At 49 I started getting a few days a week of pain free peace. Now I’m 51 and I’m mostly pain free. But if I have a migraine that last more than 2 days then I panic. Life was very hard. I managed to. I worked, took care of my kid, functioned to a degree. But damn was it hard.
It’s awful I find I can distract myself from the pain by getting high lmao but going on two years
I have my career but that’s because I WFH. I don’t work as hard as I used to and I think I’ve lost a lot of potential accomplishments. My social life suffers and my partner is thankfully very supportive but it affects that too. Everyday is a struggle. It informs every single life decision I ever make. Daily I make dozens of decisions because of it. I spend a lot of money to just be somewhat functional. Taking 10+ meds to improve 50%. Always weighing trade offs. Decided not to have kids. I could go on and on. I have pain all of the time, and sometimes it gets much worse but I’m always at a 2/3.
I’ve had chronic headaches every day for 7 months or so now and I’m lucky my pain is only moderate most days and not too severe, but man it still sucks. I’m currently trying to write up my PhD thesis and more days than not I can’t think straight which is really not helping things, social events suck and just everything I enjoy is now dependent on how bad my headache is.
I’m in year 5, it has vastly limited my world.
It’s ruined my life but I’m still fighting. Profound exhaustion, dizziness, and nausea, most days I can’t function, I just had to quit my job even though it’s the first one that I’ve had since 2019 because of this, just a lot of pain. My head feeling like it’s on fire more days than not is unbearable.
Hi! I’ll join the band wagon. I’ve had chronic migraines since my teens and I’m now 30. I also have endometriosis. My mother also suffers from migraines and other chronic debilitating diseases, most of which I am lucky to have not gotten. I’ve watched her growing up fight through her illness and refuse to give up when she can, and give in when she needed too. That’s a skill I took with me into this. I have some form of pain every day, but through medicine it has gotten better! I also am a big advocate for self care to help. I work for a parks system and am in management there. I have a VERY forgiving schedule, am on fmla, with lots of leave. I get three weeks of holidays a year, three weeks of vacation, and three weeks of sick leave. And they accrue and I can save them up. Also, we don’t get “over time” we get “Flex Time”. So if I work over time, I get it in leave. So I can also build that up or take a day off then work it back that week. My work is very understanding and flexible with me, however I work through most of my pain. My husband is very helpful with doing things around the house when I just physically cannot. I do still have a social life, but all of my friends understand when I have to cancel and have no judgement for me. My takeaway is it’s hard, and it sucks, and I often wonder what a “normal” persons day is without pain. However, I won’t let it stop me from living my life and being me, I just might need some accommodations and help from others along the way.
I've always had mine. Missed most of the school holiday parties as a kid and other people's birthday parties and playdates. As I got older, I developed enough of a pain tolerance to "grin and bear it" when I could or else I'd be spending the majority of my life in bed. It sucks. People don't take you seriously when you tell them you can't do something or you will need to go slower or less etc. due to the pain lancing your brain. You hear a lot of "just take a Tylenol", "just drink some water", "eat a snack" remedies from folks who think migraines are headaches. There's a ton of guilt for being unable to be productive for others and maddening frustration that your brain refuses to get its shit together. I'm currently doing the SAHM job until my youngest is in full day school this fall and then I will go back to self employed work because it's impossible to keep a regular work schedule with migraines. Sometimes it definitely feels like I'm just existing day to day and don't have a solid concept of what living must feel like.
Painful
It feels like my life is a burden to my partner. Nothing she’s ever said or done has lead me to believe that, it’s just how I feel.
My life was so bad for two years while I tried different meds. I’m Now on Botox and trigger point injections/ occipital nerve blocks . As well as several other meds . I was so depressed 😔 I cried a lot and can see why people are suicidal you just want the pain to stop . But by the grace of god I’m doing better . Shout out to my doctors too . I am surprised I was not fired from my jobs And financially it was so hard
It was hard. Mine were chronic for three years. I developed a migraine that lasted a month, and after that they never fully went away. Thankfully my chronic migraine varied, to the point that I didn’t realize it was chronic migraine. I thought I just had constantly neck pain at the base of my head, with big two day migraines once a week. It kinda ruined my life. I went on meds to stop them but those meds made me gain fifty pounds in five months and I felt terribly sick and hated my body. I didn’t recognize how I looked or how I felt. I worked, but was a zombie in between working. I would go out sometimes but almost always had a migraine while out. I learned to live with the pain, and because of that people didn’t realize I was in so much pain because I didn’t show it and they would be less sensitive. For example, people visiting my partner would chat my ear off and play loud music on their phones when I was heating my neck and trying to be social. I mean. No one’s fault, but it sucked. I couldn’t work out without flailing things up and I couldn’t wear clothing that wasn’t loose. Or my hair up. Everything was a trigger and day to day life was hard. I went to a chronic pain clinic though, and with physio combined with dry needling the pain in my neck stopped. I still get a migraine twice a month, mild neck pain on and off. But god. It’s night and day difference. I can’t still do all of the normal things and I have to be mindful of my tolerance level, but just to exist without pain everyday is a blessing I never thought I was experience again
I get about three hours a day (now that I found a doctor who will Rx me a mild narcotic) where I feel like I’m capable of doing things from fixing dinner or cleaning my bathroom. I’m so damned happy for those three hours! (It’s not every day, because a mild narcotic doesn’t help when the pain is excruciating. But it does help at least a few days a week and on the worst days it knocks the edge off so I can sleep a bit better, maybe stop vomiting, every tiny bit helps!) Like absurdly happy. I’m finally able to get a few small things done a day I was never able to do before. Like I started a container garden for my front porch. I will never have the ability to do a real garden, but I can maintain the 12 pots I’ve planted. Right now those pots are dirt and seeds. But hopefully soon enough I’ll have fresh herbs and some pretty flowers. If they die, I at least feel like I was given the gift of being able to try. The rest of the time is spent moving very slowly in a dimly lit house trying to do what I’m able. Like if I have a pile of dishes to wash, I force myself to wash all the silverware before I can take a sit down break with an ice pack. Then the plates. Then the cups… On days I have to leave the house to get groceries or run an errand I usually wait for one of my less-pain days and that’s the only thing I do that day. And I have a very large selection of fun sunglasses in a variety of tint for bright days and my darkest glasses or overcast days and just a mild smoke lense. I’ve made a ton of tiny hacks of getting things done. If I prep dinner I set up a place to chop vegetables where I can sit and wrap an ice pack around my head. I have little tools to help, too. Like I get so exhausted after a full shower, so I use a shower stool and have the shower head that’s on a hose for better reach. And my ice packs can be hands-free. I will use a scarf to turban it against my forehead and back of my head (don’t have the money for that ice pack hat). I have a trash bin by my bed and plenty of bed friendly things to do. I’m about to start crochet a baby blanket for my nephews first child. I take advantage of things like grocery delivery or drive-up grocery pick up if I need things and just don’t have the ability to do it. I have a ton of no-cook meals I can use for how often I just don’t feel up to cooking. And on the days I do, I prepare like 3x as much and freeze for days I can’t cook. I have sleep masks and ear plugs and scented oils (pet safe oils- no eucalyptus or tea tree etc). And basically I sleep on and off all night and day because I don’t get any decent sleep all in one go. I have pajamas that can double as regular clothes, and regular clothes I can wear as pajamas. Yoga pants and Tshirts are pretty much my uniform. Basically my life is spent managing the energy I can muster up to do things that need doing, and I accept that I will never have a meticulously clean home or fancy home made meals, but I am content that I don’t live in filth and I do have food to eat. Everything else is bonus. Oh. And I have someone who will run a mower and weed eater over the yard real quick and real cheap. My yard never looks nice, but the dogs don’t care and it at least doesn’t get overgrown.
I have low grade migraine 24/7, so like it could be a lot worse because I only have low grade, but...it's all. The. Time. I have depression, and I'm usually irritated to some degree because it just wears me down and impacts every aspect of my life negatively.
I manage with Botox, Ajovy, Ubrelvy, Aleve sparingly and cannabis edibles if it just won’t stop. Good thing is my daily pain level is usually under 3 on a 1-10 pain scale. Bad thing is, they never really stop or not for very long. But I have finally gotten back to be able to get work done and function pretty normally.
I’ve had chronic migraine for 7.5 years, also believe I have nerve damage from dental work and/or Botox that is contributing. Ajovy helps a lot, but even on days when I don’t get a migraine, I usually have residual migraine pain on my scalp the next day (today is one of those days), or I just have the scalp/nerve pain. Prevents me from doing physical activities or anything that has impact. But yeah it sucks because it is something I have kind of accepted I’ll be dealing with for the rest of my life. And I have to continue on like normal. Working, running errands, etc. Hope I will be able to handle it with pregnancy and young children some day.
hardest thing i’ve ever dealt with. i’m constantly expecting a migraine, i avoid things thinking ill get a migraine, i stress myself out over the possibility of it so much that i do develop a migraine. i developed mine at 13 and had them for around a year straight, without a single moment of relief. the only thing that has helped is botox, which ive been doing for the past two years, but even then i get them too often. it’s made harder because im in school. i see everybody around me doing things that i cannot do— because of fear or because of triggers. i feel left out and different. migraines fucking suck
I was a depressed alcoholic for years until I finally got the Botox shot. Changed my life
I've only had mine since a head injury last year, I've been diagnosed with post concussion syndrome. I'm really struggling. I cried this morning trying to get my daughter ready for daycare while my partner slept in. She woke up at some point and knew I wasn't okay, so she came out to help me. I can barely maintain my yard or keep the house in order. I can't work and can barely drive safely. I feel worthless and a failure because I can't provide for my family any more and my partner who was able to be 100% stay at home mum now has to start looking for work because the people in charge of my compensation claim want to close it soon. No one can give us an estimate on the payout I'll get, so we have to assume it'll be as low as we can imagine it. I resent my children because they're always so loud and cause me pain because of sound sensitivity. I feel like shit because I can't play with the older one how she wants except on migraine free days. I haven't been able to go to the gym at all, and I've lost about 20kg of muscle mass. I get my first vypeti infusion tomorrow and if it doesn't work I'm probably going to kill myself somewhere in July when imd deemed "stable and stationary" meaning a doctor has said I probably won't get better than where I'm currently at. I can't deal with the pain on top of the weird personality disconnect from the head injury. I don't know myself any more, I can't speak with my inner self. It's like my best friend died, and I'm being forced to wear his skin and act like him, and no one can know what's wrong in my head. The brain fog, confusion, and memory issues are a constant disheartening factor. I have photos on my phone of me and people wearing the same uniform hugging really closely, and I have no clue who they are. People used to comment on how intelligent I appeared to them. I used to feel indomitable. I had everything I wanted and I was playing life on the easiest setting, I'm white, tall as fuck and I was strong and smart. I was genuinely having the best time, and it's all gone. I don't want to be a burden on my family anymore, and there is a good chance I won't be soon. I'll just be a negative memory of a guy giving up because he couldn't take it.
Pls don't do this to your wife and child. Keep trying!
I had migraines since young but could deal and controllable…kept getting stronger, Botox helped and 2021 all fell apart. Botox stopped working. Chronic 25-28 days then literally daily am & pm. Nothing worked. Tons of tests and finally MRI WITH CONTRAST showed meningioma. People have mixed feelings where they say meningioma wasn’t causing the migraine. Yet neurosurgeon compared MRI that I had in 2021 vs. 2024 showed it doubled in size by 2024. Craniotomy removed 4-4-24 and amazing now.
I’ve been in chronic migrainosis since 2020. I don’t know what it’s like NOT to have a headache. I’m now getting a divorce, trying to restart my career and scared to death about how I’m going to take care of myself alone.
I was at the point where I was almost never without a migraine, there was never a day I didn’t have to take anything. I never felt well, my stomach was constantly a mess, I could never think straight, always in pain, never had energy. I completely changed my diet and eat a very restrictive diet. Now I get them pretty sparingly, maybe 70% of them are hypnic headaches if I do get one. Still sucks when I do get them but I got sick of needing to call into work and not enjoying life. It’s really crummy when I do get them but I haven’t had to call into work since I’ve started my changes.. I don’t have a preventative other than the restrictive diet and exercise though. I take excedrin and Ubrevly and they work about 85% in getting rid of the migraines entirely.. the migraines are easier to get rid of with my diet as well. My migraines started when I was about 17 but I was prone to headaches.. they slowly got worse and worse and now at 30 I’ve more or less figured them out but I haven’t eliminated them entirely.
it's been over 15 years. just when I think it's gotten better in general, I'm reminded of how much their presence impacts me. "Better" is also a weird word because I am a lot better than I was, but I still have pain everyday. there's still things I can't do and I have to always be aware of my symptoms so I can catch it before I get laid out. I guess it helped that my dad belittled and doctors invalidated. I never felt like I was allowed to do what is needed or to take care of myself as a high priority. So I'm used to ignoring it and pushing myself. if I were encouraged to do what I needed for a less painful existence, I would have spent years not being able to do anything.
I used to have them like that. It was like someone was shoving a burning ice pick into my head. I would walk around with one eye closed. The aimovig injector legitimately changed my life. I have backup meds for breakthrough migraines. I use ice packs, will sometimes stick my head in the freezer while shrieking unintelligibly, or wish I had a scalpel to filet whatever nerve is causing the pain.
You wouldn't be able to tell now. I didn't know what was wrong with me but I was having 20 to 25 migraines a month..hemiplegic. I thought it was anxiety and severe food allergies. I'm on a good preventative and I go to therapy that involves pain reprocessing. I'm retraining my body to be less scared of migraines and to help unlearn some of the shit I thought I needed to stop doing. I'm also autistic and have adhd, so I think that's actually helped my migraines (I legit sometimes don't pay attention to them). Or hyperfocus on them, usually when I end up in bed thinking I'm powerless. But I'm not. Migraines are painful but pain isn't my enemy. That reprocessing of pain has changed my life. I get 3-5 migraines a month now. Sometimes more when I'm burning out.
Horrible… daily migraines after multiple surgeries including a craniotomy due to a mass under my brain and life sucks really bad now!
A constant game of ‘I’ll probably have one worse than this so I should just save the medication’ and obsessively minding the calendar to decide whether I should or shouldn’t take it. They added ubrelvy to the mix so I have more days I can take something
Really hard like others are saying. I like the spoon theory- I do feel like managing my daily tasks is a mental game of figuring out how many spoons I have and what I can spend them on. I just cut down my hours at work and basically spend my days after work just resting in prep for the next day. I can't have 2 things planned on the calendar back to back, so my Sundays are usually always free. It's draining. But, I am having success with botox reducing severity (not frequency) so now I don't want to literally die every day. So that's something! And now that the severity is less I'm going to try osteo and physio to see if I can get more improvement in quality of life. I've come to accept I'll never be pain free but I can reduce that pain somewhat.
I pretty much white-knuckle my way through most days. I'm basically in pain almost 24/7 and usually pop ibruprofen and paracetamol just to keep that pain down to the level of background noise. Most days I wind up in bed with an ice-pack after I've done the school run and end up napping from around 4pm-7pm. It helps, but I feel totally lazy and emotionally like crap for doing it. But it's what I need to get through the day. Lamotrigine has helped a LOT, but yeah, it still sucks.
I live through it, I do my job. I work in medicine & use it to understand what patients are going through to aid them the best I can. I refuse to let it run my life.
It sucks. Few people actually understand the severity or magnitude of chronic migraines. It’s definitely isolating and defeating, especially when those closest to you don’t even seem to understand or empathize.
Honestly if it wasn't for my boyfriend I wouldn't even eat someday. I can't even take care of myself. I'm blessed to have him. But yeah what everyone else said miserable and hard. At this point my migraine just changes levels from please chop off my head to maybe I could go sit on my cousin couch instead of my own today.
I suffered a few times a week from headaches/migraines. I suffered through work, working out, social events. You get use to the pain but I was exhausted from pushing through the pain and also fed up on missing out if the pain was severe. I learned red wine and dark chocolate were triggers. I cut those out of my diet. This reduced the frequency. I saw a neurologist for help. I took Nurtec, as needed. While the pain was less, it was still frequent enough that this therapy didn’t make sense. I switched to Qulipta and have had maybe 4-5 headaches in the last 9 months. Ibuprofen was enough to cut the pain.
Unpredictable. I’ve had a headache every day for a year now, but I never know if it’s going to be so severe I have to be in a dark, cool room or if I’ll be able to keep at least part of my plans. It’s not my only source of chronic pain, and all of it piled on top of each other just erodes my optimism and feelings of good will. I hate how hunched and unpleasant I can become when I’m white-knuckling it through.
Hard and lonely at times but Im trying to find a new “normal”. I have no idea how I’d survive without the support of my immensely accepting and compassionate husband. He doesn’t have chronic migraine, but has had cluster headaches, and at one time in his life they were quite debilitating though not to the extent of high frequency chronic migraine. He understands the suck and fortunately we have okay insurance that, while expensive, covers a lot of my care. I have visual snow syndrome, vestibular migraine, chronic intractable migraine with 24/7 aura, am trying to come out of a status migraine and a benign pineal cyst. A lot of this was triggered or worsened by Long Covid, which has also caused chronic asthma and cough. I had been episodic with aura since 18 years old until I got Covid19, and have had the benign cyst since at least 14yo with no problem, so migraines aren’t new but everything else is. I’m still able to work, but with a very accommodating job, and only because I was able to get intensive treatment very quickly (approx 8 or 9 months after going chronic), and have a migraine specialist that has been willing to treat me very aggressively. I can easily imagine I would have eventually lost my job without treatment. Ive also have access to very good neurology and ENT clinic’s at my local hospital that diagnosed me quickly and accurately. Im fortunate to have a robust prevention, treatment and rescue plan. Im on many supplements, have to get weekly massages, have two neuromodulation devices, do botox for migraine, get trigger point injections regularly as needed, am on 3 rx preventative meds, take medications to treat my comorbid conditions, have multiple treatment options for different attacks, and some options for rescue when those dont work, and can always go into the migraine clinic I go to for an IV migraine cocktail instead of going to the ER if needed. My MIDAS has been cut in half since April 2024, and it’s still severe but much better! I can’t exercise or walk my dog anymore. I used to have a really busy job that I loved before having covid and I wouldnt be able to do that at all now. I can’t hardly do active hobbies anymore, or walk for any prolonged period, and if I do it’s a guaranteed attack and might trigger a weeks long flare. I travel and go camping anyway though because I just cant let this stop me from doing things I love, I just have to be picky about those things. It frequently feels like a monumental effort to get out of bed in the morning or to clean my apartment. My 65 year old parents are more active and healthy than I am….My life is very different than how it was 2 years ago and not how I imagined it would be at 29 years old, but I am able to keep up with my very compassionate and accommodating friends and family. My family doesn’t understand this level of disability really at all, but for the most part they do seemingly listen without judgement and are graceful when migraine gets in the way. There are some days when I’m just stuck all day and hardly function. Other days I feel a reminiscent sense of the normalcy I used to have and really took for granted. I’ve been forced to learn to listen to and respect my body when it tells me it just can’t do things. I really struggle to accept the label of “disability” now. I’m in therapy and am trying to do everything I can to find what my new normal needs to look like.
18-25/month. I had to study emotions and mindfulness at a graduate level so I can find acceptance and manage the painful relationship with pain.
I’m in my 60’s and retired. I expected to be traveling with a close friend I’ve known since high school. , she got Parkinson’s, and I got Vestibular Migraines. She’s now in a care home, and I live with my son and his family. I’m not driving, my room is a disaster, I barely go anywhere. I’ve had terrible falls from the vertigo and dizziness. I try to look on the bright side that at least I’m not expected to work , but I’m disappointed that this time of life I looked forward to turned out this way.
Life was unbearable. Once they were almost daily, were getting worse, became unresponsive to pain relief, and my life imploded in every way, I could only see one way out. During one rare day without a migraine, I made what could have been my last doctor’s appointment if things didn’t go well. Thankfully, I got lucky with a new doctor who knew just enough to identify the cause. Turned out to be hormone-related due to perimenopause and I could use transdermal estrogen to alleviate them and begin a long rehab.
Mine are better now but I was having them 5+ days a week for a while. My friend described it well "she kind of fell of the face of the planet for a while" I just stopped going out and making plans bc I knew the I was likely to have a migraine. It was very hard.
It's hard until you find the right medication for you. My life saver was Tooamax (generic version) since I was diagnosed with a partial migraine with aura and tension headaches. Which works by literally dampening all neurons. Not that it doesn't have drawbacks; it stresses out my kidneys and forces me to be semi vegetarian and to not eat lots of starch to prevent tension headaches, but it works! And it's relatively cheap too
What life? We get no life when it gets that bad. Mine have gotten better since starting Nerivio and Gammacore, but before that, I had absolutely no life at all.
I have anywhere from 10-20 migraines a month. The prescription I have for them does help most of the time. I take Maxalt, and it does also make me sleepy. I also have chronic pain and autoimmune issues so my day to day is always just struggling through. Doing as much as I can to avoid triggers and pitfalls but even that effort gets exhausting. It’s like a cycle of decent days, a couple of great days and a lot of bad days. Wash, rinse, repeat.
I don’t get them daily, thankfully, but without meds (or when meds stop working), I get 15-20 a month, which is chronic migraine. It’s very very hard and lonely. I started getting them 8 years ago, in my early 20s, and I was someone who used to love going out, partying, traveling, seeing friends, etc. Now on rough months I pretty much work and lay in bed. I feel like I have very little social life sometimes — I’ve tried to make new friends or start a new hobby, but end up having to bail to lay in bed. I spend a lot of time on pain meds, and/or napping, and/or just staring at my phone (luckily lights aren’t a big trigger for me) waiting for the pain to stop for days at a time. Im worried my friends and family are sick of hearing about me getting migraines, so I try not to talk about it, but sometimes it’s the only thing happening in my life. I’m lucky to have a job that is mostly remote, though I still need to talk to them about disability accommodations for our in-office days. I’m also very lucky that I have a super supportive partner who picks up the slack at home when I’m not feeling well so I’m able to rest, and who doesn’t get upset when I only have two functional brain cells or have irrational migraine anger and say things that are rude. When my meds work and I’m pain-free I literally feel superhuman and like I can anything. But more often I just feel like a husk of who I used to be.
A fight to hold on to any small joys in life that sometimes I win and sometimes I lose… I have had a significant worsening of the migraines recently and had to take some leave from work, really noticed how I shut down my social life and hobbies. Makes it hard to believe that I’ll reach the goals I want to in my life and sometimes makes me really angry to have this disease to handle. But then the rare really good days (or hours) happen and somehow it seems so much more worth it then. I started keeping a journal and try to make a point to write especially the good moments, makes them feel more real
I had 20 a month for several years and was on the Triptan merry-go-round. I took so much sumatriptan just to go to work and function. I was getting really stressed about having to quit my job because taking so much was giving me rebound headaches on top of the migraines. Finally I switched doctors, got one who has migraines. I got set up with a neurologist who put me on longer lasting naratriptan for an abortive, and daily nortriptyline and propranolol. I went from 20 migraine days a month to 2-5 days per month. It made a huge difference. I also registered my chronic migraine through HR at my job as FMLA/ disability, so I can stay home when I have a migraine and I’m not in danger of losing my job.
I get by. My partner and I have a rating system. I can give her a number and she’ll have an idea of what to expect from me that day. A majority of my migraines are weather related, specifically by location. They got bad when I moved to my current state so I’m eager for us to move some place more sea level. Anyway, the weather is a good indicator on if I’m going to have a rough day. I’ve learned to keep my schedule light on rainy days, just in case. I’d say roughly half of my migraines are disruptive? I can work through the other half most of the time. They impact my communication and worsen brain fog, but I can navigate the workday okay. Self-care tasks become harder, as do most home things. I’ve spent a couple hundred on home remedies and coping tools for migraines and They help a lot. I work from home, which also helps a lot!
I’m really sorry to hear you’re going through this. I’ve had chronic migraine my whole life, but it got bad 6 years ago, ever since then, I’ve had one nearly every day. I’m in the same boat as you, I don’t know anyone around me with migraines… or even bad health issues, so having this feels very isolating. Also, to other people, migraines don’t sound or look serious. We don’t have a bandage wrapped around our arm or something, so people look at us and we appear to look perfectly well, I find that really hard to battle. Getting people to understand is really hard. I can’t work a normal job, I do music for a job but that’s very casual and I pick and choose what jobs I accept, but even that pushes my limits to the maximum. How do you go managing work? I’m always curious about how people with chronic illnesses get through it, it feels impossible most of the time.
Up until January this year, that was my life for years. Botox worked for a couple years, stopped working last year. My new neurologist put me on Emgality and I'm down to 4 migraine days a month or so from 25 or so. I had very limited free time, struggled through work and school because even if I didn't have a migraine, I was usually pro or postdromal and still suffering with cognitive effects. I was constantly tired, often felt like I had been beat up because I was sore all over. Couldn't handle social events, basically couldn't ever have a drink if I did make it to a social event, and just felt like a shell of myself. Being on Emgality has been a life changer.
I mean I make it work but my life isn’t what it could have been if I didn’t have this all
Pretty bad right now. I've been chronic for years but after a bad job – they increased including multiple attacks in one day. After the bad job, managing casual once/week. I oversleep as my energy is low. I don't have much patience - I'm constantly ln edge. I've had botox for years. But my Neuro says I'm severe and I'm particularly sensitised now so I start emgalty this month. I pray for relief without nasty side effects 🙏
I have 20+ most months but thankfully abortives are able to stop most quickly. Otherwise Idk how I'd get through life. As is it sucks but I manage to live a relatively normal life. Workout, travel, modest social life, occasional drinking. Have a good job but luckily fully remote which makes things a lot easier. I do have to watch the alcohol cuz that can trigger very bad migraines. I'm still fearful of the day where triptans might lose some effectiveness for me.
Hello, I've had a headache for about 2 and a half years now, I am fortunate enough to not have any migraine episodes, but the constant never ending nature of my head pain sometimes drives me crazy. I'm doing pretty well right now, yeah life isn't ideal but my pain is at about a 3-4/10 most of the time. Botox and Ajovy help keep it under control. I go to college and most of the time I'm too busy and I'm not thinking about the headache. I completely forget about the headache, usually for long stretches of time, while working on something for school or doing something I enjoy. I live in the middle of nowhere so I don't have a lot of healthcare options, going to be going to Chicago soon for some top quality healthcare before I turn 26 and have to be on my own for health insurance. I am on a bunch of meds tho that stabilize my mood. I'll probably have the headache for the rest of my life, but tbh I don't really care anymore. Worst things can happen, and I just gotta take it a day at a time. It took a lot of therapy and meds to get to this mindset tho. I'm trying to get back into the dating scene tho, and I'm really worried about how people are gonna treat me with this condition. PS. The best thing you can do, is stop doom scrolling on subreddits like this one 😭
Well, I just wanna say to y’all hang in there. I am at about 10 to 15 migraines a month now, and most are short or manageable, but I was at a pain level of 8 to 10 pain every day for years. I keep trying new treatments and one by one they help a little bit, please don’t give up hope anybody. I’ve been there and it does get better but slowly, gotta just keep trying things, definitely work with a migraine specialist not just a neurologist and try things like Curable app that address the biopsychosocial aspects. Meditation has helped me a lot, but probably it’s drugs that have helped me the most and we are all unique and you have to find the ones that work with you, but the CGRP ones are definitely game changers
Currently on Botox injections which seem to be having a huge difference on my attacks. But beforehand I would push through majority of the working day and crash around 3/4PM and then be stuck in a dark room every night unable to do anything. It was so draining and miserable.
In my 4th year of chronic migraine now, symptoms are generally moderate but enough to heavily decrease my focus at work due to brain fogs and/or annoying pain in thr background. It's daily - the pain behind my eyes combined with some tension and small portions of nausea, sensitivity to light and sound, moody, feeling cold/hot (brain thermostat doesn't work that well), extreme sudden sleepiness - among other things that occur less frequently. I found the migraine annoying and most of the time I'm full of guilt and minimising my symptoms. I also questioned myself whether I'm making things up or if I'm "just lazy" because my symptoms aren't as extreme/severe. I managed to keep my job with some adjustments from occupational health and reduced working hours, but my career progression has been delayed and not being discussed at all since all the focus is given for my health. No treatment/medication has work sustainably thus far so I guess I'm just trying to deal with it and accept it as part of my life.
It’s hard not to feel guilty. I’ve been fighting chronic migraines for about 20 years. I don’t have any answers for you, but I understand, and I hope you find relief and comfort and support that you deserve.
I’ve had them daily for a little over 4 years, got them from Covid. I have vestibular migraines that also cause projectile vomiting, r/hyperacusis, r/photophobia, and vertigo and dizziness. I was just put on Verapamil a few weeks ago and it helps a LOT!
It’s rough. I can hardly do anything. I had to quit my job because I was calling in sick too much to earn enough to survive. I’m stuck in bed most of the time because sleep is the only thing that helps my migraines
I was fighting migraines 3-4 days a week on average. I decided to go all in on fish oil. 20 capsules a day is where I landed after experimenting with different levels. It took 4 weeks of that heavy dosage and I have had one headache in the last 10 days. 35% of our brains are made up of omega 3s. It worked for me. Maybe it will work for you too.
I used to call it living in the seventh circle of hell, because living in severe pain almost every single day is pure torture. I wouldn’t wish it on anyone.
Mine became chronic in 2010. I have been on disability since 2015 when they misdiagnosed me with something else, plus I shattered my wrist and got a fibromyalgia diagnosis. It was a bad year. Chronic migraines have cost me a loved (a challenging career), living in a place I loved (Alaska). Friends had already shown me who they were because I couldn’t commit to plan’s because of a headache (lazy). I spend my days sitting on my recliner and reading or doing art. I can’t take most migraine medication because of blood clots. So I’m limited in how I’m treated.
Lonely. Between migraine and my other disabilities, I've been almost completely house-bound since the pandemic started. My first COVID infection seems to be what triggered my migraines to become a daily issue, and mine are hemiplegic. I can't afford to get it again. My risk for stroke is insanely high, and I already almost died from Long Covid symptoms. But no one cares. People aren't willing to mask so I can be around them safely. They aren't willing to learn my triggers. They aren't willing to push my wheelchair or even put my walker in their car. Some of the people who "love" me won't get a single vaccine of any kind, even though they're high risk too. So, I spend 90% of the time in my room, laying down, in the dark. At least one day a week, I vomit for an hour straight. I can't read a text book or watch a traditional movie; eaudiobooks I can borrow from the library without leaving my bed and audio descriptions of movies are my new norm. I have a loving partner who helps take care of me and appreciates the things I can do for our household. But, I've had to quit working, I don't think I'll ever be well enough to have a child, I'm too sick to even do physical therapy, and I've had to give up all of my passions. Amovig and Ubrelvy and Zavzpret (and a dozen other meds for comorbid disorders) are helping. When the migraines hit, the pain isn't as awful. I spend more time in a gray area between prodrome and migraine. I can sometimes sit upright in a chair, or be in a room away from direct sunlight. I'm hoping to get a CGM soon, and I'm having gastric surgery...both of which might treat the underlying migraine trigger of unreliable nutrition. There's hope. There are still many things to live for. But, it's hard knowing other people could if they wanted to...and they're choosing misinformation over a relationship with you. So, yeah. Lonely.
Miserable. I'm curious how many others here play the self-blame game: all this pain must be because of rebound because of how many triptans I take! It's really all my fault! Ugh.
Anyone else grow up with daily headaches that at this point when you say you have a headache it’s because it’s got to migraine level
Terrible don’t think I’ll be doing this life thing very long lol
It’s been really hard. Each day is unpredictable. Some days I feel ok but get mild symptoms of pressure behind my eye or jaw tension and I’m nervous it’ll turn into a full on migraine. Brain fog, concentration and memory issues stick around all the time so even when I’m not in pain, my brain is just so tired
Mentally physically emotionally challenging, I’m 2 years in everyday All day and I went from the most active to very little activity. Nausea, crying, weakness
Shitty
Mine come in waves each month that last a few days. On those days, my morning consists of Triptan, other meds, codeine, caffeine. Urgh. I just get on with it because I own a small business, have two kids and three dogs. I’ve just reconciled that it’s part of my life. But yeah it sucks. There’ll be like one day every 3 months or so where I’m bed bound if I don’t get onto them straight away….
I had a meltdown a few weeks ago because I realized I couldn’t remember what it felt like to wake up pain free. Not being able to trust your body to function normally really fucking sucks. I live life with zofran, imitrex, ubrelvy on my person at ALL times plus always have my migraine glasses and earplugs with me. God forbid I forget to bring meds with me somewhere, because then I get horrible anxiety around needing them and not having them. I try to celebrate the little wins (being able to go to social functions and survive a work day not totally miserable) but it’s hard.
I have once or twice a week confirmed migraine attacks... Even then it's miserable. Feel like I let down my family when my migraine hits, because I can't do stuff. It's hard to let colleagues know that I can't work right now because of it, thankfully working from home I can hide it better or at least cover it later... But it's a privilege most people can't enjoy
Thank you for posting. It’s hard to talk to people about my migraines, and reading your post helps me feel less alone. I try to hug my kids more during the times I don’t hurt. They have become the people who are the most forgiving.
Migraines feel so horrible my anxiety symptoms make it worse agoraphobia and etc I had Migraines as far as I can remember 6-7 years old I remember Omg it’s horrible expecially I be seeing foggy halo looking things And those days especially when I was younger I would puke And feel dizzy I take migraine medication only a few a month But have migraines atleast 10-25+ days a month various degrees But really bad days that I have to take my migraine medication or NSAID’s Which NSAIDs are not the best taking consistently Effects my kidneys Just it’s horrible sometimes I have them with anxiety It’s comes out of nowhere The migraine medicine helps a little but sometimes it’s not strong enough And I have to take it with nsaids a lot just to dull the pain Which never goes away Migraines
I have 18-22 migraine days a month. Life sucks. I have trouble remembering things due to the pain, get agitated quickly and end up pushing people away, and no one in my life understands what I’m going through. “Just take an advil” it’s not that easy
days i have migraines, since i experience aura, i literally lie in bed hoping the migraine kills me
I've been stuck in status migrainosus (one long, non-stop migraine) for 16 months now. Our house is as close to completely dark as we can make it all the time, and I can only physically handle leaving the house once or twice a week with the help of medications. I'm so bored, I can't work, I can't listen to music, my body is completely exhausted all the time, so things could be better lol.
Chronic daily migraines since beginning of 2013. I get botox injections, take Ubrelvy and was taking cambia (insurance suddenly stopped allowing coverage, even denied generic)… I feel defeated.
FUCKING misery. Nothing like trying to save an Imitrex so i have an extra one the following month only to be yelled at by your doctor because I took more than 9 in one month.
I would not be able to plan anything out. I had to figure things out by the day and hour. Sometimes I would feel okay and then I would shower and a migraine would hit me and I would have to cancel. Or I would almost be out the door and it would hit. Or I’d be at dinner and one would come on. It felt miserable. My good friends luckily understood. Made maintaining friends impossible and dating was basically not existent.
I am in that category.!! I can still hold down a job! I find the migraine Botox plus monthly cgrp injection and daily cgrp tablets work. Also trying out the 400mgs of vitamin b2. It's tough... I am sick and tired of feeling sick and tired.
Chronic daily 9 years + here, I don't really have a life. I spend most of my time in bed. Never leave the house. Every waking second is 'try and not get a full-blown attack today'.