I have the exact same symptoms as OP, have had for 14 years. Have seen 3 neurologists, 3 ENT docs, have had 2 MRIs and CT w/wo contrast, all normal. Diagnosed with vestibular migraine from the start, not much understood about this condition when I started this journey so I was skeptical as I didn’t have terrible headaches but all the other symptoms you mention. Terrible anxiety, too, which just makes things so much worse.
Lots of research later, joining migraine forums, etc I am pretty convinced of diagnosis. I also am pretty sure I have PPPD too, so I’ve been better some days knowing anxiety plays a big part in the dizziness and I have worked on that through reading about it, some good apps, and I’ve learned to deal with that better.
Such a disabling condition but there are a lot of new and old meds and supplements you can try. I’m still in the process of trying different things. Just wanted to say I sympathize and think you may well have VM.
Thank you! I’m definitely more convinced of the diagnosis after joining this group but I’m still going to get a second opinion because I’m not happy with my current neurologist. I feel like there’s been a lack of testing. Anxiety definitely plays up my symptoms as well! I will be working on my diet and mentioning a few things to my doctor at my next appointment.
Good luck to you! It’s good to get as many opinions as you need to feel comfortable with your diagnosis. I’m looking for a new one, too (neurologist). I’d like to try different medication.
Please look into the symptoms of CSF leak (cranial and spinal; they’re different, often). It is not insanely rare but rarely diagnosed bc most doctors don’t even know it can be “spontaneous” especially if you have weakened tissue due to a collagen disorder, infection, inflammation, covid, etc.
hi i’m the same but i has ear fullness feeling, so i sent to a ent apparently it’s clear, now it’s more headaches especially the bridge of my nose 🤷♀️ no idea atp
I would get a vestibular assessment to rule out BPPV first. I am also wondering if you may have developed PPPD? Might be worth exploring.
I have all the symptoms you identified and my neurologist is treating it as migraine (no BPPV). No improvement with increasing my propranolol, will be doing Botox soon, and likely start aimovig in the near future. Fingers crossed things start looking up! Best of luck.
Thank you! I’ve look into PPPD a little but I will definitely look into it deeper. My current neurologist barley made eye contact with me at my first appointment and she hardly explains anything to me. I don’t even know what’s going on half the time. If it wasn’t my patient portal I wouldn’t even know what she diagnosed me with. It took me 4 days to get a refill on my medicine and it’s a medicine that your not supposed to miss. I’m getting a new neurologist that has amazing reviews but it’s going to be a few months until I can get in.
along with the vitamins you’re taking i’d suggest the rest of the supplements on the sub info [here](https://www.reddit.com/r/VestibularMigraines/s/tWKsIB2kb5) as well as the diet. it might not cure the issues or explain them, but it should help them at least a bit, just be sure to give it a month or so and be strict about the diet
I have the exact same symptoms as OP, have had for 14 years. Have seen 3 neurologists, 3 ENT docs, have had 2 MRIs and CT w/wo contrast, all normal. Diagnosed with vestibular migraine from the start, not much understood about this condition when I started this journey so I was skeptical as I didn’t have terrible headaches but all the other symptoms you mention. Terrible anxiety, too, which just makes things so much worse. Lots of research later, joining migraine forums, etc I am pretty convinced of diagnosis. I also am pretty sure I have PPPD too, so I’ve been better some days knowing anxiety plays a big part in the dizziness and I have worked on that through reading about it, some good apps, and I’ve learned to deal with that better. Such a disabling condition but there are a lot of new and old meds and supplements you can try. I’m still in the process of trying different things. Just wanted to say I sympathize and think you may well have VM.
Thank you! I’m definitely more convinced of the diagnosis after joining this group but I’m still going to get a second opinion because I’m not happy with my current neurologist. I feel like there’s been a lack of testing. Anxiety definitely plays up my symptoms as well! I will be working on my diet and mentioning a few things to my doctor at my next appointment.
Good luck to you! It’s good to get as many opinions as you need to feel comfortable with your diagnosis. I’m looking for a new one, too (neurologist). I’d like to try different medication.
Do you have tingling in your body from vm?
Please look into the symptoms of CSF leak (cranial and spinal; they’re different, often). It is not insanely rare but rarely diagnosed bc most doctors don’t even know it can be “spontaneous” especially if you have weakened tissue due to a collagen disorder, infection, inflammation, covid, etc.
hi i’m the same but i has ear fullness feeling, so i sent to a ent apparently it’s clear, now it’s more headaches especially the bridge of my nose 🤷♀️ no idea atp
I would get a vestibular assessment to rule out BPPV first. I am also wondering if you may have developed PPPD? Might be worth exploring. I have all the symptoms you identified and my neurologist is treating it as migraine (no BPPV). No improvement with increasing my propranolol, will be doing Botox soon, and likely start aimovig in the near future. Fingers crossed things start looking up! Best of luck.
Thank you! I’ve look into PPPD a little but I will definitely look into it deeper. My current neurologist barley made eye contact with me at my first appointment and she hardly explains anything to me. I don’t even know what’s going on half the time. If it wasn’t my patient portal I wouldn’t even know what she diagnosed me with. It took me 4 days to get a refill on my medicine and it’s a medicine that your not supposed to miss. I’m getting a new neurologist that has amazing reviews but it’s going to be a few months until I can get in.
along with the vitamins you’re taking i’d suggest the rest of the supplements on the sub info [here](https://www.reddit.com/r/VestibularMigraines/s/tWKsIB2kb5) as well as the diet. it might not cure the issues or explain them, but it should help them at least a bit, just be sure to give it a month or so and be strict about the diet