New and Doubting Disgnosis

Hi there,
I have been likely diagnosed with MAV. I am having trouble accepting it. I was wondering as many of you have probably had the VEMP test, how did that test make you feel? When it was happening for my my eyes were oscillating up and down, like I could see the ceiling moving with each tone burst. This only happened on one side but happened for the whole time on that side. I wonder if I have something ear related because of that?
Thanks for any input!Schmoozie

I also posted this under tests but not sure if people check there…sorry if some of you read this twice

I also feel like sometimes moving my neck to the left side while sitting upright triggers some dizziness and then my neck actually twitches? Anyone have this symptom???


I have a diagnosis of MAV, and like you found it rather hard to accept initially. I definitely have some inner ear damage (as I have pulsatile oscillopsia), but this can be caused by migraine.

Hopefully some of the others will chip in with their own experiences as well.

I can’t comment on any physical issues with the neck and how they relate to migraines because mine are caused completely by non-physical things (artificial light exposure, lack of sleep, rage). And I didn’t take the test referred to in the initial post. But I will say that I doubted my diagnosis at least a little bit for a while, and even remained at least a little skeptical right up to the point that a migraine supressant started helping me. I have never had a classicly painful migraine headache in my entire life, so it was hard to believe that all of this imbalance stuff was being caused by migraines. I was hopeful that it was right because then the meds would probably help me, but migraine is a hard diagnosis because there is no test to show that the diagnosis is correct.

I was delighted with the MAV dx, because I had been misdiagnosed with Meniere’s and was all set to go for corrective surgery!

Me too David, they thought I had Meniere’s which was a scary diagnosis, but end up having MAV… still not a great thing to have, but I think it’s a bit better than Meniere’s.

Were you diagnosed by a doctor that specializes in vestibular disorders. What kind of Dr was it. I was so confident in my doctor since he is well known in this field. But even then, my mind started wondering since I had very few headaches in my life. But I think it’s our nature to question things and that’s ok. But personally, I was extatic to finally have a dx and see a doctor that understood fully what I was going through. I cried.

As far as your symptoms, they sound similar to many here. I don’t have twitches in my neck but it always feels like a force is trying to push it down. It also feels really heavy like a bowling ball. And anytime I move it, I feel dizzy.

Hope you get more answers. And hope you are starting treatment.

Oh don’t get me wrong. After months of wondering what the h*** was wrong with me I was delighted to actually get a diagnosis too! I just was somewhat skeptical since there were no tests and no way to prove it other than the doctor basically telling me that it was his gut feeling. Well, it took us a year to find the right medicine, but he turned out to be right. I questioned him a few times in that year, but I’m glad I stuck with the treatment plan. But some of my symptoms also screamed “classic migraine” more than some other that get diagnosed do even though I never had even 1 single actual migraine headache.

Thank you all so very much for taking the time to respond to me. I truly do appreciate it!! Its nice to know Im not alone, however I hope you are all getting better and hope I will too! I was diagnosed by Dr Cherchi, so I am confident but I feel weird about it too because I only had 3 tests done so I wonder if I had more if something else would have shown up. He said that we will do the 3 tests and then start trying to treat the MAV and if it doesnt respond then we will do more tests. I just get nervous something is being missed, but I also know that I have to accept it to get better in some ways! I have had these issues for almost 2 years!! It is great to know that you are all around and it is definately a very confusing disorder and it doesnt help that people get different symptoms and there is no definitive test especially for people like me who like to see things clearly! Im an accountant! Not a lot of room for maybes in my work!
Thanks again so very much!

If it makes you feel better, they only ran two tests on me. I had an MRI of my brain, and then some vision test to make sure my eyes were ok. That was it. There really isn’t much to test with migraine. It is a diagnosis of exclusion, meaning that all they can do is prove that you don’t have OTHER things. They can’t really prove that you have migraine unless you start responding to the migraine medication. So they just have to listen to your description of the symptoms and try to determine if your getting migraines.

It drove me nuts too, especially when medications #1 and #2 didn’t work. I wondered if maybe they missed something. But medication #3 worked, so the doc turned out to be right!

Jamie, what meds are you on again? I’m about to start my #4 after I see my doc on the 25th. Ugh!

I am on topiramate (Topamax). 100mg. I’m currently getting off of Nortriptyline. I’m down to 75mg and I hope to be completely off of it in another 12 days. I’m bumping down 25mg every 5 days on that. Verapimil is the other med that didn’t work for me.

I’ve been on the Nortriptyline since last fall, but I don’t think it was doing much to the migraines. I DO think it has been a good mood stabalizer during the time that I was a bit demoralized over not being able to get better. So it helped me out in that way even though I don’t think it was helping me much with the migraines. There IS a possibility that it is the combo of the topamax and nortriptyline that is working, but I suspect that is not the case. We will find out.

Things got dramatically better for me almost instantly with the topamax. I noticed a change within 2 weeks even when I had only been at 50mg for about a week. That isn’t a typical response–for whatever reason, the topamax just really works for me. I haven’t decided if I’m going to stay at 100mg or go higher yet–I’m going to wait and see how I feel off of the Nortriptyline first. Since I’m not gettting any big side effects yet I have the option of going up higher if I want. I guess for migraine they will take you as high as 200. I would like to take as little as I need though, just because I don’t want to venture into the territory where I start to see side effects.

My big trigger is bright artificial light. I had gotten to the point that I just carried sunglasses with me at all times to wear in public because I couldn’t tolerate most public indoor lighting. That was how I noticed the topamax was working so quickly. My wife and I went out to eat at a restaurant and we were sat at a table with a light right by it that should have had me rocking away in about 5 minutes. I decided to wait for the symptoms to start before putting my glasses on and shockingly, while I got the beginnings of the migraine head symptoms (numb brain and head pressure) the rocking never started! That was a first in a long, long time, and was the first indication that the topamax was really going to do something. Especially since it wasn’t supposed to really kick in for at least two months and that was after only 14 days.