I am new and wondering if this sounds like Mav

I was wondering if this sounds like MAV to anyone?

When I was in my twenties I would get dizzy when I laid down. It was a spinning out of control and whirling sensation that only lasted a matter of seconds and was gone. I ignored it and it eventually would go away. It came and went for about five years until it came with a vengeance when i was about 25 and I was constantly spinning and could not keep anything down. I was hospitalized and put on fluids and got better. When I was 30, I started to feel the sensation again only when I laid down to go to bed at night. Went to an ent this time who I believe did the eply maneuver on me and I was cured. Two years ago, I got sick and it started again. This time i went back in to get the eply menuever done again and it got rid of the spinning but it left this after effect that I had never experienced before. Brain fog,fuzzy head, hard time in stores, could no concentrate, dizziness when i turned my head, very hard time using computers. Had to take a leave from work as I work on computers all day. Started Vestibular therapy. After about three weeks I was doing better and went back to work. At that time, the PT said I had bppv and a unilateral vestibular hypofunction.

August 2010 it started to come back again. I was having spinning sensations and went back to vrt but the the physical therapist said she could not see the nystagmus. I was totally contused she couldn’t see it and started thinking it was all in my head. Again, after a few weeks i started doing better but it never fully went away this time. In feb 2011, It came back again. Terrible brain fog this time. ( I remember that being the worst symptom). Again, still had the spinning sensation. The Eply maneuver was done and the physical therapist still said she could not see the nystagmus. My ent did an vng and it came back normal. I was so frustrated. Not that I wanted to have something wrong with me but I knew there was something not right and I felt like people thought I was making it up. It got somewhat better again but never went away. The Dec 2011, it started getting bad again. Very fuzzy head. Felt like my head could not keep up with me. Could not handle store,crowds,computers,going up and down stairs. Went back to ent who sent me to a new physical therapist. She saw the nystagmus. Said it was bppv. After ten weeks of vestibular therapy could not get rid of the nystagmus. I ended up going to a neuro-vision doctor who saw my problem as well and said my vision system is under duress because of the vestibular issues I’m having.

There is no ENT in my area who specializes in vestibular disorders so now I’m traveling 275 miles away to see a new doctor. The doctor there (a neurologist) suspected mav. She put me on 25 mg of topamax moving up to 50 mg in two weeks. Going back in two weeks to meet with a ent who specializes in vestibular disorders. I get headaches but I’ve never classified them as migraines. I’ll get a lot of them over a couple of weeks and then gets better. My last bout with them was a couple months ago.

What do you think? Does it sound like MAV? Sorry so long.

Sounds a bit like my story. I started out with BPPV, which over a few months turned into MAV. The BPPV is sudden attacks of true spinning, which stop after a short while (although could leave me feeling terrible), while the MAV is fairly constant (and as you said, often triggered by things like stores, crowds, lights, etc). Sometimes I feel like I still have BPPV sometimes, such as when I lay on my left side in bed (which was worst during my BPPV episodes) but like you, the physical therapist I saw recently couldn’t see the nystagmus, so I think it’s all just MAV now. I also don’t get headaches very often at all (usually weather related, or maybe if I’m under a lot of stress), which is why it took me a while to realize that this is what I have.

I wish you all the best with finding a good doctor. This forum has been a life-saver. I’d suggest trying some of the lifestyle modifications (migraine diet, good sleep schedule, exercise) and seeing if it helps you. The book Heal Your Headache also is a really good resource (and, like this forum, convinced me that I really do have MAV).

Sounds like it could be MAV. You’ll find a lot of good information and advice on this forum - keep reading. In terms of a diagnosis don’t get hung up on the ‘headache’ thing. Plenty of us rarely experience headache and even then it’s not the brain/skull splitting kind usually associated with migraine.

Thank you both for your responses. I bought and read the book heal your headache(reading is difficult sometimes). I started to cut the triggers it suggests out of my diet yesterday. Still learning about it. Does anyone know how long it normally takes before you start to notice a difference with the dizziness after cutting the triggers out of your diet? I know everyone is differnt. Guess I am just looking for an idea as to when I may start to feel better. I am on 25 mil of topamax per day for the next week which I split in half pills and take one in morning and one at night. The after next week start taking one 25 mil in morning and one at night. I do that for two weeks and then up to 50 mil twice daily.

I think this forum is wonderful. There is so much information on it.

Thanks,

Teri.

Sorry, I haven’t had much luck myself in identifying food triggers. Sometimes I can eat nearly anything on the migraine list and feel fine, and other times I’ll eat one little thing and feel horrible. I guess it just depends on how high my threshold is that day. Personally, my big triggers are hormone changes and external factors like lights, crowds, etc.

I hope you start to feel better very soon :slight_smile: