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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
I was about 45 when the AIED hit. At that point , if I remember , my hearing loss was diagnosed as severe. My hearing just progressed to deafness gradually.
I hated the way I felt on the meds and needed to look for a job. I guess I decided that I’d rather be deaf than sick. So I stopped the meds and went back to school to get trained in a field that didn’t need me to hear well. I had been a teacher at a community college.
I’ve read that many autoimmune diseases hit women disproportionately. And stress impacts everything. But I have a hard time fitting personality into the picture. I think the disease and your hearing don’t give two hoots about personality. I can’t imagine that the researchers who gathered the statistics about AEID even met the humans who were diagnosed. If you are type A you’re lucky, you’ll have plenty of drive to cope with all this.
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Also, I think it’s ironic that you have had this for 30 years and reached out found the mayo clinic just to share your story I mean that’s amazing. I only ended up on connect because I went to them for a second opinion and they told me they could do nothing else than what the doctors were doing which gave me peace of mind that I was getting the best care I could. I’m glad that I got to meet you Becky.
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You’re right on the personality traits, but that’s what my audiologist told me. I suppose they wanna find a reason for everything instead of maybe what we put in our bodies or what we breathe then not sure how you feel about those types of things so the meds don’t necessarily make me feel terrible. I know they’re risky, but at this point, I am going to give it a whirl just to see but I am prepared for at least I think I am for if they don’t work what the future holds and having your help with how it went and how you feel and how you’re dealing 45 is pretty youngI am 57 so you’ve been dealing with it for a long time and I’m guessing by the fact that you play pickle ball you still enjoy activities and have fun !!
When you take the CI’s off at night to have a device that notifies you by vibration or light if there’s noises or anything or are you married or have a partner that can help you I’m assuming you keep them by your bedside just snap them on as soon as you get up?
I hope you don’t mind, but as this progresses, depending on what happens, I am going to be reaching out more to you