First. Simply put, thank you. Your documented experiences and words of hope are single-handedly getting me through this.
I’m only 24. I’ve experienced vertigo on and off for the last year. In the last three months, it’s gone from bad to worse. After going to six specialists and undergoing the gammet of tests (you know the ones–vestibular, cardiovascular, audiology, neuro MRI, etc.), there wasn’t one doctor who’d brought up the possibility of MAV. All the tests kept coming back normal and there seemed to be no answers. Here’s my list of symptoms: PERSISTENT rocking sensation especially when still, worsened by bright/flourescent lights (restaurants are bad for me), occasional migraines/auras, brain spasm-like feeling. Does this sound like MAV to all of you? I’m so curious to know!!
I work as a television anchor for morning news and I’m finding it virtually impossible to get through the 2 hour show. For someone with visual vestibular sensitivity, imagine throwing in consistant bright lights, tracking a teleprompeter and sitting up with no arm support!! Does sitting up straight for pronlonged periods heighten any of your diziness?? I’ve worked so hard to get to this point and now I’m terrified I’m going to have to give it all up because my body just can’t take it anymore. I should mention I have a VERY weird sleep schedule. I get to work at 3:30 am (I know…) so lack of sleep is another contributing factor.
My neurolgoist has never heard of MAV. He did, however, put me on Topamax, aka “Dopamax,” about two weeks ago. Yes, I’ve noticed the brain haze-- I pronounced New Hampshire as “New Hamster” on the air yesterday :). Other than that, side effects appear liveable. I’m only on 25mg and he says we’re going to step it up to 50mg end of this week. I haven’t noticed the dizziness subside yet but I wanted to ask about your stories on Topamax how long it’s taken you to see results. Did it help with the diziness directly? Only thing I’ve noticed disappear is the occasional migraine aura.
Also…desperate for a knowledgable doc who knows MAV. Any good refereals? I guess I’m feeling the pressure to get answers quickly here before I back out of a position I know I might never be able to get back. Thank you, in advance, to any of you who take time to respond! You’re all courageous people and remember, this is making us stronger, more vibrant people with a greater appreciation for life’s little blessings.
We’re in it together…