those with MAV - Inner Ear Disorders Message Board

comeandrelax · 12-30-2007, 02:36 PM

can you please list your symptoms? my doc is leaning towards this now and id like to hear what your symptoms are or were thanks

Wowwwweeee · 12-30-2007, 04:08 PM

I luv the user name. I would LOVE to relax!

I have been diagnosed with MAV, and have been dealing with my symptoms for fourteen years.

Over the years my symptoms have varied, and I am not sure if this is due to compensation or healing.

My main symptoms to-date are:

A feeling of being pulled to the right when standing or walking (I will walk to the right if I have no-one on that side of me).
A feeling of needing to lean to the left when I am sitting (I tilt my head to the left when I am sitting).
Motion intolerance - I cannot tolerate being on anything in motion - elevators, escalators, treadmills, swivel chairs - because once I get off of something moving, my body still feels like it is moving.
Unable to lie flat or on my side. To do this for any length of time causes me to "spin".
Unable to navigate in the dark - I lose my sense of space (where I am) when I am in the dark.
A sense of being in motion when I am still (lying, sitting or standing). My head or body is always oozing, rocking or swaying on some level.
"Imprinting" - for lack of a better word, this is what I have named it: if I am wearing high-heels and I change shoes to put on a different heeled shoe, I still feel like I am wearing the first pair. If I am walking barefoot on a carpet, and I walk on a different height carpet, my legs still feel like I am walking on the first carpet. If I have a purse hanging on my shoulder and it moves, the movement throws me off balance. If I am in a car (yes, I drive) and I stop, it still feels like I am going forward in the car.
Standing or sitting for long periods of time bothers me because my head prefers me to move. Basically, being in motion feels better than to be still.
Inability to be comfortable in too large (stores) or too small (restroom stalls) spaces - this visually throws me off or leaves me feeling that my eyes are taking in too much.
Patterns on walls and floors throw me off.
If a picture is hanging crooked on a wall, that throws me off.

To name a few...

comeandrelax · 12-30-2007, 05:25 PM

how long did you deal with these until you got dx'ed?

how are things now

Wowwwweeee · 12-31-2007, 07:47 AM

And of course, I forgot to mention the daily headache I have on some level every day.

I was diagnosed in two seconds by a physician who specialized in migraine headaches the first few months I was experiencing severe symptoms, however, he didn't do any type of testing on me or even much of a cursory examination. I thought he was wacko to sum me up so quickly, and since I had no idea at the time was MAV was and since my symptoms (to me) were so bizarre, I thought he must have misdiagnosed me, so I kept looking for answers from different specialists.

At the time of initial onset, I worked in a rehab facility, so I used some resources through that, and was informally diagnosed with MAV over the phone via another rehab facility who actually faxed me basic literature on MAV. Again, back then, MAV was little known, but I was interested that two separate entities diagnosed me with the same thing.

I saw quite a few different specialists, who suggested everything from allergies to BPPV to Labs to anxiety. It was a very confusing time for me, and sometimes I still feel confused by what I am actually dealing with.

Fast forward to the last few years (maybe seven?), and my neurologist and eye doctor have separate conversations with me about MAV and migraine in general. Then discovering a family history of migraine and vertigo, well, here I am.

Things now for me are better because I have learned to cope better, as well as I believe that I have gotten "used" to and have learned to adapt to my head symptoms. I also believe that I am a VERY SLOW compensator, but healing has taken place to the point where, without medications, this current status (my current symptom list that I provided to you) is how I will remain. I still continue to see small improvements and changes; for that I am thankful and delighted. However, I am not sure that I will greatly improve any more - I mean, I've had this for 14 years now. Good gravy!

Please don't misconstrue me here, I would LOVE to be symptom-free. There aren't many wishes that top that one for me.

I worry now about how things will be as I age because I know that older people have more imbalance/vertiginous issues. That scares me.

xo

comeandrelax · 12-31-2007, 02:06 PM

how come you won't take meds?