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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Jun 25 3:06pm | Replies (217)Comment receiving replies
My eyes are involved too. It’s so hard to get doctors to understand. I agree you have to do research on your own. I just feel like researching my health is all I do and that can get depressing!
Did you go to Chiropractic for pinched nerve. Were you in pain?
I see this is an older post but I would like to hear more because your symptoms sound like mine.
Most people don’t mention their eyes.
Replies to "My eyes are involved too. It’s so hard to get doctors to understand. I agree you..."
I have nystagmus when I have a full on vertigo attack. My eyes uncontrollably jerk around which is what causes the spinning and the vomiting. It’s so awful. My neurotologist said it could be Autoimmune Inner Ear Disease but my official diagnosis is Meinere’s Disease. I also have lupus. I had not had any symptoms with vertigo for 40 yrs. and just this past August started with the vertigo episodes again. I’ve had several attacks since then and the dr. put me in Betahistine 24mg. 3x a day. It doesn’t seem to be helping. Dr. Durakovic (Wash. U) said the treatment would be the same for either diagnosis. Very discouraging. I’m also on anti depressants. In my gut I believe it’s autoimmune related but also exacerbated by the depression and anxiety. It’s one of those dilemmas of which came first, the chicken or the egg? I’ve journaled and there is no pattern of anything that I can say is definitive. At least we’re not alone in this! Good luck to you.
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Also I find a lot of doctors do not respect the research of the patient. I feel we need to partner to find answers.
Integrative group is willing to do that. My former PCP was not.