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DiscussionAnyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
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.
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.