New here, but have been skulking around reading for a little while.
I’m living with a working diagnosis of MAV which came on whilst watching a projector at work. Symptoms started with imbalance and episodes of nausea then progressed to include tinnitus and then vertigo attacks and finally pronounced visual vertigo that made visits to the supermarket very uncomfortable as well as using a computer for any decent length of time. MRI was clear, hearing test shown only minor high frequency loss, though I’ve always had one better ear. Oh and the stress appeared to bring on TMJD. One morning sitting up in bed my right jaw muscle went into spasm and it started to click. Seeing the dentist for that … what a bore. I’ve also had a bit of episodic ear pain and strange sensations of fluid in the ear which tends to clear within a few minutes generally (although i’ve had it last for 24 hours too).
Initially I was on VRT and had Clinical Psychological counselling. The latter was particularly helpful and let me get to grips with my tinnitus which was (and sometimes still is) hard to bear, especially when ‘playing up’. I had a really good remission of the vertigo attacks to begin with without need of any medication. Unfortunately after attempting to return to work the attacks started again.
When I expressed my frustration with my consultant she recommended I perhaps try some medication to control what she believed to be migraines (I feared I had MM).
Started on Propranolol but immediately this started to slow me down and after a week I had scary chest pains so came off it.
My next drug was Amitriptyline, initially 10mg, but the plan was to escalate to 30mg.
The first improvement was sleep - I started to reliably get 8 or 9 hours sleep!
After only 3 days my vertigo attacks stopped and I have been almost 100% free of visual vertigo and fluid in the ear, though sometimes I get a slight pain in the ear. Tinnitus fluctuates in annoyance and generally is worse by bedtime.
I’ve remained on 10mg and have been attack free for nearly a month now, so considering another attempt at returning to work.
However, i’m still feeling slightly dizzy, but its not the same dizziness from before which was sometimes very asymettrical, more a light headedness - is this an effect of the drug? I’m basically about 70% of where I was before I became ill but all of the time and more stable, versus the fluctuating symptoms I had before.
Does this get more pronounced the higher the dose or is it possible I simply am not taking enough to reduce the dizziness?
Is the point at which the visual vertigo goes and the attacks stop a sign that you are taking enough?
More generally, could some of this be TMJD - I read one of the symptoms is dizziness, and interestingly I read that Ami is used to treat TMJD too!
Given my apparent success on a reasonably low dose of this drug, does anyone believe there could be an even better alternative that could eliminate the dizziness altogether?
And finally, has anyone’s T improved once their other symptoms had stabilised? Mine presently is getting more annoying, not less, and more pulsative, particularly later in the day. Hearing doesn’t seem to be degenerating I’m glad to say, but I will get this confirmed formally in a year or two.
Thanks all, and good luck to you all, this is indeed a crazy condition that requires a lot of strength to bear.