Anyone out there with Autoimmune inner ear disease (AIED)?

Posted by tinae @tinae, Apr 29, 2023

Hi - I have been on an emotional roller coaster for the last year since my diagnosis of AIED. Just looking to see if anybody else out there has been diagnosed and how they’re dealing with it. Thank you.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

needanswers7 | @needanswers7 | May 26 9:55am

In reply to @siosal "Have u tried a major teaching hospital?" + (show)

Saw Ent and Neurotologist at Wake Baptist Hospital, NC. Ent said a Meniere’s Disease in both ears. ( Extremely rare to have Meniere’s in both ears.) Neurotologist said AIED, get a new Rheumatologist.

needanswers7 | @needanswers7 | May 26 10:01am

In reply to @tinae "My NRA was 1.5. I do not have any other auto immune diseases. We have some..." + (show)

Thank you. I will ask about Humira. Can anyone tell me , is hearing “normal” with cochlear implants? Do voices and birds etc sounds normal? Can you enjoy music?

lkirnbauer | @lkirnbauer | May 26 10:07am

In reply to @pha "I have also been diagnosed with AIED. It. was discover 6 years ago that I had..." + (show)

@pha

I have also been diagnosed with AIED. It. was discover 6 years ago that I had hearing loss. 5 different kinds. My hearing was stable with no additional loss until I had Covid vaccines. 4 days after the second vaccine my hearing plummeted. I was put on high doses of steroids and had shots in the ears. Did not work. I then participated in a clinical trial using a drug used for RA patients. It was an 82 day trial- giving myself daily shots and blood work and hearing tests every two weeks. Spinal taps. MRIs. The works. It seemed to stabilize the loss until I was about 2/3 of the way through. Then hearing plummeted again. More steroids- but my body could not handle it and it was not helping. So I was taken off of them. This was in 2020. I qualify for CI but don't want to do it yet. I do pretty well with the hearing aids. Last year around this time I got scleritis in my right eye and was diagnosed with more issues. Tested for tons of things- nothing showed up. A couple of months ago I was at and eye check up. Doc thought I had Psoriatic Arthritis. Started all the testing again. Went to a rheumatologist. More tests. Diagnosis: AIED. This. is connected to the eye problem which is also very serious as it could call blindness. And it is also connected with skin problems. I don't have a protocol yet. I have hearing tests and doc check up every 3 months so when I have the next one- will see what I need to do. I have already had my freak outs along the way- before the diagnosis. Expected in any event to be deaf at some point. So this is not shocking but does make me really sad sometimes. I have been through the wringer- and it's likely time to seek more help. I think the thing I hate the most is constantly having to explain that I am hearing impaired. No way around it as there are times when I just cannot understand anything. I know all of you know- but the brain power it takes to keep with conversations outside of one on one conversations- is exhausting. I am grateful the diagnosis is not some horrible painful issue- but we all know- this is serious and heartbreaking. There is pretty much a concensus that this condition was likely kicked off by the covid vaccine. It is seen in the hearing world and also been responsible for inflammation issues in the eyes. I am exhausted from going to a zillion doctors but grateful to have wonderful care. Will update this when I have a protocol. Wishing everyone an easy go of it. Besides the heartbreak of the diagnosis- the inability of so many people to have compassion or empathy for this situation is astounding. If I only had one leg- no one would tell me to run. But there is such a lack of patiernce for hearing impairment. As well- I was advised to never have another Covid Vaccine and have had none since the first two. I only took the masks off 8 months ago. All very polarizing. I have always been a super social and active person- this stuff hurts! Will be tuned in to learn more about AIED and how you all cope and treat.

Jump to this post

I do not suffer from AIED, but I have lost my taste and smell for a year and a half and it’s quite awful as well. I just wanted to say that I’m sorry you’re suffering and I do hope you get some relief soon.

siosal | @siosal | May 26 10:19am

In reply to @needanswers7 "Saw Ent and Neurotologist at Wake Baptist Hospital, NC. Ent said a Meniere’s Disease in both..." + (show)

Rheumatologists figure out the weird stuff esp when from a teaching hospital. Good advice!

needanswers7 | @needanswers7 | May 26 10:23am

In reply to @becsbuddy "@needanswers7 So many others feel the same as you! https://rarediseases.info.nih.gov/ https://rarediseases.org/ These 2 organizations are dedicated..." + (show)

Thank you Becky. Neither site has any information regarding Autoimmune Inner Ear Disease. Any other suggestions? I need to find a doctor to help me before it is too late for my hearing. I live in NC and will travel to get help.

tinae | @tinae | May 26 11:37am

Did you request an appointment with the mayo clinic?

If I were you, I would go to an ENT one that has a great reputation and then they’ll put you onto a rheumatologist and that rheumatologist is the one that can hook you up with the Humira. There’s not a lot of options for this unfortunately, there’s a ton of us out there with it, we all handle everything differently as far as the treatments and what works and what doesn’t that would be my suggestion that I took good luck with this. I know it’s a struggle.

tinae | @tinae | May 26 11:41am

Had the Humana worked I would’ve been going towards the cochlear implant. The other thing that my ENT did is he directly injected steroids into my failing ear there were three of them back to back. It did save that left ear from the cochlear implant so at this point, I’m on the Humira.

I did ask to talk to a few people that had cochlear implants.

I think when you’re faced with losing your hearing to no fault of your own, it’s overwhelming, but I When you get to the point that an cochlear implant is your only option. Your hearing will be so bad that the implant will be blessing.

If you want to ask the question on the Maio connect, I know there’s several people that have cochlear implants.

I’m very sorry you’re going through this!!

tinae | @tinae | May 26 11:42am

In reply to @needanswers7 "Saw Ent and Neurotologist at Wake Baptist Hospital, NC. Ent said a Meniere’s Disease in both..." + (show)

I agree once it goes bilateral it’s no longer Ménière that’s how mine was diagnosed

Becky, Volunteer Mentor | @becsbuddy | May 26 1:18pm

In reply to @needanswers7 "Thank you Becky. Neither site has any information regarding Autoimmune Inner Ear Disease. Any other suggestions?..." + (show)

@needanswers7 I think you should call the 2 organizations, not just read the website. You could also ask for an ENT, (ear,nose,throat) specialist. This website may also help you.
https://www.enthealth.org/conditions/autoimmune-inner-ear-disease/#:~:text=A%20multidisciplinary%20team%20approach%20between,recommended%20to%20manage%20the%20condition.
I agree with @tinae about calling Mayo Clinic. At the bottom of this page, there is a ‘request appointment’ button to click on. This will take you to information. You might ask for appointment at Mayo Clinic Jacksonville since it is close.
This discussion may be helpful:
https://connect.mayoclinic.org/discussion/autoimmune-inner-ear-disease-1/

I know it’s difficult, but you just have to search. Call university medical centers and large, teaching hospitals in your area, but wait until Tuesday.

christie125 | @christie125 | May 26 2:06pm

In reply to @needanswers7 "Thank you Becky. Neither site has any information regarding Autoimmune Inner Ear Disease. Any other suggestions?..." + (show)

I would try Johns Hopkins. They refer to it as Immune Mediated Inner Ear Disease. I've not been to their facilities but I've heard really good things about their rheumatology department through the autoimmune community.