Hi i am new to the forum but i have been diagnosed by a neurologist with a migraine associated problem which i have had for 6 months. He hasnt exactly called it it MAV but he has said it is migraine dizziness. I am currently taking topamax, started on 25mg for 4 wks now on 50mg and have been on that dose for a wk now and have felt no better. My symptoms are: A constant feeling of movement inside my head, pulling sensation in my head, elevator sensations like i am suddenly dropping down, heavy head, occasional cloudy, jumpy vision, have had 5 occular migraines in the 6 months, have feelings of chair moving if i am sitting on it, very sensitive to bright lights, feel not as bad when moving in car or walking. I was just wondering if anyone could tell me if they thought it was mav or not? Thanks
Hi there
Welcome to the forum. From your description it definitely sounds like MAV to me. I think your doctor’s terminology is just another way of saying Migraine Associated Vertigo. People, including doctors, call it different names but it all amounts to the same thing, MAV, and I would say your description is pretty classic and one that probably the majority of us on here would recognise straightaway as such. I would say MAV has a whole spectrum of symptoms from mild to severe and anyone of us could be anywhere on that spectrum at any given point of time.
Hope you find relief soon.
Brenda
It certainly sounds like it and especially considering you have ocular migraines. I’ve heard that Topomax can take awhile to work - I believe a few months at least so if you’re not having side effects you should probably stick with it.
Thanks for your reply, I guess I was just doubting my diagnosis because I have had this for so long and have not felt any better. I will just continue with the topamax and see if there is any improvement, it is very hard to live like this every day and not have people knowing what it feels like for u! I don’t think I have any side effects apart from feeling spaced out but I dont know if this is the medication, is this common with mav?
The spaced out feeling is very common with mav. I get that a lot as well as a brain fog feeling, heavy head, headaches, spinning sensations, dizziness, false motion, head intolerance to any motion. It varies for everyone - there are a lot of symptoms and what’s worse for one may not be for another. I think for Topomax you would need to give it at least 4 months once you reach the therapeutic dose - and I’m not sure what that is but I think it might be between 50 - 100 mg. There are many on here who have been helped taking Topomax. Good luck!
Sounds like MAV to me too. Good luck with the Topamax. If you can tolerate it I’ve heard it really helps. I could not tolerate it but it was my Neuro’s first choice.
Hi thanks for your reply, do you mind me asking what side effects you had with the topamax that you couldn’t tolerate and how long before they started? The other reason I was doubting that I had mav was because there is no history of migraine in my family, does this mean I can still have it?
Also I had these symptoms on a much less severe level before about 8 years ago which lasted around 3 years and gradually went away themselves. During this time doctors couldn’t find anything on MRI, Ent etc, It also came back for around 1 month around 4 years ago and again went away. Does this all sound like it could still be Mav?