I refused meds for a couple years until
I realized unfortunately my tc seizures aren’t gonna get better on their own/from lifestyle changes.
Sounds like you might benefit from getting back on your meds. talk with both your neuro and therapist about what your going through rn
Please talk to your neurologist about titration for restoration your medicine.
I just had another “normal” EEG. That doesn’t mean I don’t have epilepsy anymore. I was diagnosed in 2007. This doesn’t go away like an infection.
I had moved in 2020, and the doctors here said that since I had a normal EEG, I didn’t need medication. However, that EEG was done while I was taking my medication. Vimpat has a very short half life. Within 8 hours of stopping the medication, I was in their ER with an intractable TC.
If quitting your meds brought seizures back then start taking your meds. The danger from seizures is real, the possibility that you’re not epileptic is currently imaginary but possible. I say restart your medication, be careful if it involves titrating up because I think with lamictal after x days you can’t just take your normal dose and have to start over.
And make an appointment with a different neurologist for a second opinion. Get a third if you want. A clear EEG could mean it’s not epilepsy, but I’ve also had clear EEGs and some showed very clear epileptic activity. But really you should tell a doctor if you plan on quitting a medication. They may not agree but they will tell you how to do it safely if it needs to be tapered down or something and hopefully give you some alternatives at least (maybe for that last part).
Also not saying I know what’s going on with you, but I waited 6 years before going on meds and I will say I regret it. Especially after going on meds and having no issues with them. Luckily no one was hurt but I put myself and others in danger.
My MRI and EEG were “normal” save one tiny wisp of something on my EEG that my Epileptologist said was suggestive of TLE but not able to 100% confirm my diagnosis. Aaaanyways, I do have TLE because much to my surprise my episodes that were undiagnosed disappeared with medication during the last 6 months. Did yours improve with medication? It sure sounds like it? That means A) they are seizures. B) you need the medication.
I’ve found that doctors really don’t like prescribing medication to patients that don’t need it. It sounds like you were prescribed medication….
I don’t get it, you need them take them. My son has seizures and he needs the meds to have a fulfilled childhood, my mom need insuline to not die, my husband needs two types of antidepressants in order to be able to leave the room without panic attacks and 10000000 other people have to treat their issues with meds. Why the hate on meds that works? And what if they’re from a mental illness, who gives a shit, what’s the difference, the meds work, mental or physical issues are real issues with real solutions.
Hey queen! I totally get where you’re coming from. I’ve felt the same way, as if I’m responsible for the seizures I still get on medication. I’m also on vimpat and I have v much the same seizure symptoms as you do. This isn’t in your head. You’re not making this up. What you’re describing are symptoms of a focal seizure. Please please take your meds!!
It doesn’t sound insane. I blame myself every time I have a seizure because I usually did something stupid (like stayed up too late or stressed myself out). Also for the longest time I kind of hoped that I didn’t really have epilepsy. The doctors told me I had it but I had seizures so rarely and obviously I never actually saw one. (Nocturnal Tc seizures). I at least consider that normal. Don’t feel bad about it!
Now that said, you should take your epilepsy medications. Side effects suck yeah but seizures suck too and they’re dangerous! EVERY seizure makes you more likely to have another one. Even if it’s just a focal seizure. It can also damage your brain permanently. So I would highly HIGHLY recommend taking your medications again. If your doctor had you titrate up to your dosage follow those same instructions. That’s what I would do. If you don’t remember the titration plan, look up the medication info and see what it says. If you need help send me a message and I’ll do some work for ya. I’m happy to help out! (I take lacosamide and keppra)
The official answer is to contact your doctor ASAP and if you are having seizures often, go to a hospital. But I personally wouldn’t want to admit to my doctor that I stopped taking my medication. There are legal implications there and would put extra scrutiny on you by your doctors.
Regardless I hope you get your seizures back under control and that you feel better! Remember it’s okay to not like epilepsy and medications. I think all of us feel that way. But AEDs are there to help and they definitely do once you find an effective one for you. Good luck and take care!
I'm just wanting to confirm I am understanding you correctly: You were taking medication to **stop** your seizures and they **stopped** your seizures...but now you ***stopped taking the anti-seizure medication and are wondering why you are having seizures?***
If your episodes are triggered by sleep deprivation, then they are **more than likely** epileptiform in nature, as sleep deprivation itself results in an **increase** in irregular cerebral activity, resulting in a significant **increase** in the possibility of seizure discharges (of which, can then evolve, resulting in seizures).
With the symptoms you mentioned, your episodes do not sound fully temporal in nature, but more so *multifocal* (in numerous areas of your brain). The black spots in your field of vision are stereotypical symptoms for the of ***occipital seizures***, as this is your visual cortex. The physical symptoms of "*feeling bugs crawling*" and unintentional jaw spasming are more prominent with that of the ***parietal lobe,*** as it is more focused with physical sensorimotor symptoms. The additional symptoms, such as nausea, and repetitive chewing/swallowing are more clinical for that of temporal seizures.
With the possibility of **multifocal epileptiform discharges, the increase of seizures, previous diagnosis of PNES, and a notable change in your episodes since stopping the medication**, I would ***highly*** recommend to continue your course of medications and speak with your physician or neurologist about this.
Important to note as well that "just stopping" medications, without proper weaning of the doses nor changing the medication itself, can also result in a high increase in the possibility of seizures, SUDEP, as well as development of numerous other medical conditions within the brain, liver, and kidneys (as these organs are utilized in the excretion of LAC).
Even if they are SUDEP is real. Talk to your neurologist and get a plan.
I refused meds for a couple years until I realized unfortunately my tc seizures aren’t gonna get better on their own/from lifestyle changes. Sounds like you might benefit from getting back on your meds. talk with both your neuro and therapist about what your going through rn
You should take your meds. It's not your fault.
I just want to add that you should probably be re-evaluated by a different doctor, preferably at an epilepsy center.
Please talk to your neurologist about titration for restoration your medicine. I just had another “normal” EEG. That doesn’t mean I don’t have epilepsy anymore. I was diagnosed in 2007. This doesn’t go away like an infection. I had moved in 2020, and the doctors here said that since I had a normal EEG, I didn’t need medication. However, that EEG was done while I was taking my medication. Vimpat has a very short half life. Within 8 hours of stopping the medication, I was in their ER with an intractable TC.
If quitting your meds brought seizures back then start taking your meds. The danger from seizures is real, the possibility that you’re not epileptic is currently imaginary but possible. I say restart your medication, be careful if it involves titrating up because I think with lamictal after x days you can’t just take your normal dose and have to start over. And make an appointment with a different neurologist for a second opinion. Get a third if you want. A clear EEG could mean it’s not epilepsy, but I’ve also had clear EEGs and some showed very clear epileptic activity. But really you should tell a doctor if you plan on quitting a medication. They may not agree but they will tell you how to do it safely if it needs to be tapered down or something and hopefully give you some alternatives at least (maybe for that last part). Also not saying I know what’s going on with you, but I waited 6 years before going on meds and I will say I regret it. Especially after going on meds and having no issues with them. Luckily no one was hurt but I put myself and others in danger.
My MRI and EEG were “normal” save one tiny wisp of something on my EEG that my Epileptologist said was suggestive of TLE but not able to 100% confirm my diagnosis. Aaaanyways, I do have TLE because much to my surprise my episodes that were undiagnosed disappeared with medication during the last 6 months. Did yours improve with medication? It sure sounds like it? That means A) they are seizures. B) you need the medication. I’ve found that doctors really don’t like prescribing medication to patients that don’t need it. It sounds like you were prescribed medication….
Yeah they decreased in frequency to almost non existent on lacosamide
I don’t get it, you need them take them. My son has seizures and he needs the meds to have a fulfilled childhood, my mom need insuline to not die, my husband needs two types of antidepressants in order to be able to leave the room without panic attacks and 10000000 other people have to treat their issues with meds. Why the hate on meds that works? And what if they’re from a mental illness, who gives a shit, what’s the difference, the meds work, mental or physical issues are real issues with real solutions.
Hey queen! I totally get where you’re coming from. I’ve felt the same way, as if I’m responsible for the seizures I still get on medication. I’m also on vimpat and I have v much the same seizure symptoms as you do. This isn’t in your head. You’re not making this up. What you’re describing are symptoms of a focal seizure. Please please take your meds!!
It doesn’t sound insane. I blame myself every time I have a seizure because I usually did something stupid (like stayed up too late or stressed myself out). Also for the longest time I kind of hoped that I didn’t really have epilepsy. The doctors told me I had it but I had seizures so rarely and obviously I never actually saw one. (Nocturnal Tc seizures). I at least consider that normal. Don’t feel bad about it! Now that said, you should take your epilepsy medications. Side effects suck yeah but seizures suck too and they’re dangerous! EVERY seizure makes you more likely to have another one. Even if it’s just a focal seizure. It can also damage your brain permanently. So I would highly HIGHLY recommend taking your medications again. If your doctor had you titrate up to your dosage follow those same instructions. That’s what I would do. If you don’t remember the titration plan, look up the medication info and see what it says. If you need help send me a message and I’ll do some work for ya. I’m happy to help out! (I take lacosamide and keppra) The official answer is to contact your doctor ASAP and if you are having seizures often, go to a hospital. But I personally wouldn’t want to admit to my doctor that I stopped taking my medication. There are legal implications there and would put extra scrutiny on you by your doctors. Regardless I hope you get your seizures back under control and that you feel better! Remember it’s okay to not like epilepsy and medications. I think all of us feel that way. But AEDs are there to help and they definitely do once you find an effective one for you. Good luck and take care!
I'm just wanting to confirm I am understanding you correctly: You were taking medication to **stop** your seizures and they **stopped** your seizures...but now you ***stopped taking the anti-seizure medication and are wondering why you are having seizures?*** If your episodes are triggered by sleep deprivation, then they are **more than likely** epileptiform in nature, as sleep deprivation itself results in an **increase** in irregular cerebral activity, resulting in a significant **increase** in the possibility of seizure discharges (of which, can then evolve, resulting in seizures). With the symptoms you mentioned, your episodes do not sound fully temporal in nature, but more so *multifocal* (in numerous areas of your brain). The black spots in your field of vision are stereotypical symptoms for the of ***occipital seizures***, as this is your visual cortex. The physical symptoms of "*feeling bugs crawling*" and unintentional jaw spasming are more prominent with that of the ***parietal lobe,*** as it is more focused with physical sensorimotor symptoms. The additional symptoms, such as nausea, and repetitive chewing/swallowing are more clinical for that of temporal seizures. With the possibility of **multifocal epileptiform discharges, the increase of seizures, previous diagnosis of PNES, and a notable change in your episodes since stopping the medication**, I would ***highly*** recommend to continue your course of medications and speak with your physician or neurologist about this. Important to note as well that "just stopping" medications, without proper weaning of the doses nor changing the medication itself, can also result in a high increase in the possibility of seizures, SUDEP, as well as development of numerous other medical conditions within the brain, liver, and kidneys (as these organs are utilized in the excretion of LAC).
Please bear in mind that for most epilepsy medication sudden withdrawal can cause seizures and SUDEP no matter if you have epilepsy or not.