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Hearing Disorders Message Board


Hearing Disorders Board Index


Hello. I've been told I may have Autoimmune Inner Ear Disease (AIED). Is there anyone else out there going through this?

My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.

I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.

Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.

Any information would be greatly appreciated. Thank you.

Alisa
Hi Alisa

I sympathise and know what you're going through. I have an autoimmune condtition (Cogan's Syndrome), part of which is autoimmune hearing loss. I've had it for 5 years now and fortunately the last year or so has been virtually problem free. But I went through the vertigo, tinnitus and many episodes of losing my hearing (and inflammatory eye problems due to the CS). It took about 2.5 years for me to be able to walk normally after the initial attack on my balance and my hearing loss episodes (which didn't recover spontaneously) were treated with injections of steroid into my ears. My biggest piece of advice is to seek help urgently if your hearing doesn't recover in a day. Early treatment is considered to be one of the reasons I can still hear now. I never got my natural sense of balance back but my brain adjusted to having no sense of balance in my ears.

Good luck and let me know if you have any questions.......Susie

[QUOTE=OneWorriedMom]Hello. I've been told I may have Autoimmune Inner Ear Disease (AIED). Is there anyone else out there going through this?

My biggest complaint has been vertigo for the last 5 months or so along with tinnitus. My hearing is ok so far on paper, I guess you could say. But I have awakened twice in the last 6 weeks or so with hearing loss in one ear. First, my left ear, then two weeks later my right ear. Both episodes only lasted about 60 seconds. I am also feeling more pressure and some discomfort in my ears lately. The caloric part of my ENG came back showing significant bilateral weakness. I should also mention that I have other autoimmune conditions.

I saw an ENT who is sending me to an otologist who specializes in autoimmune problems. I can't see this new doctor for almost 3 months. Meanwhile, the first ENT I saw said if I lose my hearing for more than 5 minutes to call him. That's not exactly a comforting thought.

Does anyone out there have any advice or experiences to share? There doesn't seem to be much information on the web about this, especially about patients' individual experiences.

Any information would be greatly appreciated. Thank you.

Alisa[/QUOTE]





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