HI all, I post on several boards here but dont think I've ever on this one which is where I really should be I imagine.

Could anyone please reassure me or give me some advice. To try to make a long story short(are these stories ever short?), all of this started for me about 2 years ago. IN that time I had had a booster shot for measles, mumps, rubella for a new job I was starting (I'm 35 and an RN) and also had 2 car accident with whiplash about 4 months prior. It seemed to come on vaguely, gee did I just feel dizzy? type of thing and had manifested into a constant daily problem.

Had mri, all vestib testing, seem by neuro and neuroto, diagnosed with MAV, as I have other neuro symptoms as well, tinglings here and there especially of one side of my face, neck pains, constant aches here and there. I always pass the neuro exams but do have a sway I can feel almost constantly. I also have a pushing feeling inside myself, tremors at times, like my system is in constant overdrive and oh did I mention the visual symptoms. Flickering in the distance, cant stand any fluorescent lighting and I am sitting here typing with sunglasses on as it is sunny and the computer screen drives me nuts. I also have floaters/flashes, a dimming of sound at times in either ear, I am battling a cold/sinus thing right now so I'm sure that is why this is creating axiety in me over all of this and it shouldn't because I can honestly say that I NEVER feel normal.

At times I have the dissassociated feelings like I am in a dream state. Cant stand wal mart, am off balance immediatley in there, or any busy lighted place for that matter. I can recall this summer I took a couple trips where I drove behind my husband as he was on his motorcycle and that a real no no for me anymore and we would go for hours and when I got out to fuel up it felt like the ground was undulating beneath me. Sound familiar to anyone??

I felt for sure I had ms, but they say no, its panic, GAD, MAV, oh and Fibro thrown in for some added fun. I have tried vrt with no real results, been to eye doctors who say I have a weakened musculature in my one eye causing tracking troubles which could contribute to all of this. But do you think it could. The neuro oto said all of my tests were normal but the rotary chair did show a misinformation from my eyes to brain stem etc. I am thoroughly disgusted and sick of this. I have to take xanax, which thank God helps it, I cant tolerate other meds and I dont want to be hooked on anything but I fear I will be on the xanax because I have had to increase it to 2 times a day recently as I have been under alot of strain, lost my job to the place closing, and had to get a new job. I DREAD it as it is in a huge hospital with so many computers, lights etc that set me off and I cant take xanax all day just to get by.

I feel like I could be disabled, my husband dosn't understand because I try to put on a happy face as he cant stand sickness of any type. He's a great guy but I think he just wishes his old pal was back.

I'm sorry for ranting on and on but really would like to know if anyone could please pass on anything that sound familiar so I could put my mind to rest a little. I keep second guessing everything becaue it never get better. And another quick question is do any of you think this could be a labs, or vn or anything like that???

I beg anyone to answer if you had the stamina to keep reading, which is something I can barely do anymore either. All blook work, cardiac etc was normal because I know someone will ask about that. I have had every test known to man and some probably not known to man. Thanks :) Kim

Hi Kim,
So, so sorry to hear about your journey through this mucky mess. It really is horrible, isn't it. Sounds like you've seen all the doctors and had all the tests (and come up with quite a few diagnoses, too!!! :eek: ). If you've spent any time at all reading through the posts here, the archived info or done general research on the web, what you know is that these vestibular issues are sometimes impossible to pinpoint. Though most of your testing has been inconclusive to this point, there's been more than one or two postings here of people who have true, disabling vestibular sypmtoms and present with absolutely normal tests. FRUSTRATING!!!!!!!!!!!!!!!!!!!!!!

The fact that you want to drop in the "big box" type of stores makes it sound vestibular to me, though I'm no expert. (I'm not familiar enough with MAV to know if that is a common symptom for that condition, as well.) I just know that at my worst state in my course of uncompensated VN, I could not tolerate Target, Costco, etc. - even the grocery store was an impossiblility. Since you were given a diagnosis of MAV, what about meds to treat that?

You mentioned that this started 2 years ago - at what point did you start VRT, what did it consist of and how long and how faithfully did you continue it? Something that I had to be reminded of early on is that VRT can be a very long, hard but helpful cure. (I was wanting to see results in a matter of weeks, and it ended up that months would have to pass before I could detect any small noticable difference.)

Oh, boy, do we sympathize with you, Kim. You have found a group of fellow sufferers who know exactly how difficult life can be with an invisible disability - one that can make you feel absolutley miserable every waking moment. We will all be pulling for you as you continue to sort this out, and I'm certain that between all the varied experiences represented here, you're going to find support, encouragement, and maybe even some information that will be of help to you as you progress through this.

Sending warm wishes for a much better year ahead,
Robin

Hi Kim,

I think we have chatted once before, I remember your board name. You know it does sound a lot like MAV. I also have this diagnosis and many of the symptoms you mention are familiar to me. The visual symptoms and sensitivity to light alongside the balance issues is a bit of a give away. Of course it is possible to have VN as well as migraine and the latter can hinder compensation from the former - this is also possible. They are unclear which is the case with me.

I think you may have told me this before but the most obvious bit of the post I would home in on is when you say - 'I cant tolerate other meds' You may have told me this before, so if so, my apoligies, but why is that? And are you absolutely sure? I have tried a number of meds with little success but am now trialling topamax with slightly more success. You sound fairly certain about this, so you must already have tried a fair few, but there are a heck of a lot of migraine meds out there and it would seem the obvious way to go in your case.

it's very late here in England and I'll write more later, but just wanted to say hello for now and ask about that.

best,