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Psinger's Dizzy Adventures

Contents

Summary
Symptoms Summary
Rough History
Start of Journal

Summary

First acute balance issues:
Number & duration of acute phase(s):
Any suspicious physical event/trauma leading up to dizziness:
Start of chronic phase:
Age at chronic onset:
Started medication:
Stopped medication:
Number & type of consultants seen to date:
Diagnoses received (one I’m “running with” first):
Medications used successfully for MAV:
Failed medications for MAV:
Non-pharmalogical treatment tried which helped:
Non-pharmalogical treatment tried which didn’t seem to help :
Dietary triggers identified:
Any hearing loss in either ear:
Persistent or intermittent tinnitus and character:
Other chronic conditions I’m suffering from:
Medication I’m taking for other conditions:
Any personal history of migraines:
Any family history of migraines:
Any history of ear problems:
How did friends, family, and doctors react to your symptoms?:

Symptom summary

(Your current state)

What’s Gone: (what symptoms you had but no longer get)
What’s Ongoing: (what symptoms you still get)
My Worse Day Now: (description of the worst day you get now)

Rough History

One Day in January 2015, crossing a crowd of people passing the other way heading in the Washington DC Metro system, Woosh! Felt extremely dizzy and off balance. Ears were ringing. Hurried to the metro platform and found a bench. Called my afternoon appointment and cancelled it. Went home and laid down. Thought maybe I was catching a flu. This got a little better, but not much. Could function, but barely. Very discomfiting, like walking on a cruise ship, or drunk. Ended up going to my general physician, who suggested nasal spray, and later an ENT, who diagnosed Vestibular Neuritis (sometimes called labyinthitis, but that can involve hearing loss) and prescribed prednisone. He was quite confident. Said it would clear up and never come back. I disliked the pred side effects, but it did dissipate over two months, with only minor dizziness when I bent over, and I thought I was done with it forever.

But alas! January 2018, the disequilibrium and tinnitus restarted, accompanied by intermittent eye discomfort, feeling of “glare”. Worst of all was a feeling of fatigue every day, could barely manage to get through each day. I was certain it must be Vestibular Neuritis again. I disliked the prednisone so much I thought maybe I could wait it out. I remember going to the Women’s March and managing it (though not well.) Went back to the ENT a month or so later. He had no real answers but suggested a hearing test as a rule out, possibly a brain MRI and a consult with “someone at Johns Hopkins” but told me regarding all this that "it would probably be nothing and that “vestibular rehab is just for old people who are worried about falling down.” Very discouraging and not helpful. To be continued…

Start of Journal

1 Like

Just had 2nd monthly 140 mg Aimovig injection. Though it’s idiot proof, I may have done the 1st one incorrectly. Not sure if the freebie card allows more than 2 before they charge $700 per injection! Which my insurance will not pay until I meet a high deductible. I do not have pain, but have days of intense fatigue and increased ttinnitus. My 2 years of daily dizziness has decreased to a minimal level with 50mg a.m,and 75 mg pm,of topirimate…but had to endure significant side effects, now worn off,to get there. But worth it. Interesting to read others experiences with Aimovig. So far it seems like I have had more days of fatigue and tinnitus, not less, so not sure whether to try a 3rd month or not. Have started tracking by calendar days as bad, good or fair to make it simpler than my complex charts…last aimovig month (that may or may not have gotten full amount) was 50% bad days. Worse than usual. But going on Lexapro a month ago has made bad days not be accompanied by hopeless anger and depression that worsened in the lockdown. Will keep you posted, but so far, can’t see results on my symptoms, unfortunately.

Seems people here are having success with these new injectables so maybe it is the best way to go. From what I’ve read three months worth should tell you. It might work out for you yet.

How are you factoring in the side effects of Lexapro start up I wonder. My GP said to reckon that would make me worse for at least three weeks before seeing improvement and tiredness and tinnitus are both listed side effects. Difficult to establish what’s doing what I imagine.

Thanks for your reply! I am not finding more tiredness or tinnitus except on my frequent attack days (I think) and I’ve been on the Lexapro about a month. It really helps woth more patience and tolerance and anger and hopelessness when I don’t feel well (& when I do) which is something worthwhile when so many days are hard to bear.