Anyone out there with Autoimmune inner ear disease (AIED)?
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.
@tinae Hello and welcome to Mayo Clinic Connect! I’m sure we can answer your question, but we’ll need more information. When I looked up AIED, the only thing I found was autoimmune ear disease. Is that it and is it your primary diagnosis?
Hi – yes it is auto immune inner ear disease. Basically I am losing my hearing due to this disease. Originally it was thought to be something else, but once it went bilateral it wax diagnosed. Mostly middle aged women, very rare.
@tinae Yes, it is very rare, maybe 15 out of 100,000! You must have seen all the right doctors in order to get a diagnosis.
I’m also giving you the link to our hearing loss group because there are currently no discussions about AIED in this group. You can look through the discussions and find an appropriate one for you. You can also re-ask your question there:
Have the doctors made any suggestions for treatment?
I tested positive for 68 kD (kiloDalton)/HSP 70 (Heat Shock Protein) after sudden hearing loss in my Left ear in December. AIED was suspected, and I was put on high-dose Prednisone 60 mg/day, in the morning, and referred to a Neuro-Otologist at Anschutz in Aurora, Colorado. He did an extensive exam, and determined I have Idiopathic Sudden SensoriNeural Hearing Loss (ISSNHL). I’m going to have a new baseline Hearing Test when I get titered off Prednisone, and have a consult/fitting for hearing aids. Everyone is booked WAY out. Can’t get in until end of June! I try not to worry TOO much about going deaf, but it is definitely a big concern. Do I learn sign language, lip reading, or just wait to see if it can be managed somehow? There doesn’t seem to be much guidance available for proactive people. It might be kinda fun to learn new skills, tho’. I’ve read that over-the-counter hearing aids are not appropriate for my type of hearing loss. I need low-range and tinnitus features in hearing aids. Have you learned anything more about your treatment options or prognosis? I’d love to "hear" about it!
Hi @vault and @tinae, I have added this discussion to the Hearing Loss support group as well.
Because autoimmune inner ear disease (AIED) is defined as a condition of bilateral sensorineural hearing loss (SNHL) caused by an ‘uncontrolled’ immune system response, you may also be interested in these related discussions:
– Consultation for sensorineural hearing loss: https://connect.mayoclinic.org/discussion/consultation-for-sensorineural-hearing-loss/
– Can sensorineural hearing loss be prevented?: https://connect.mayoclinic.org/discussion/can-sensorineural-hearing-loss-be-prevented/
– Help: Sudden Sensorineural Hearing Loss (SSHL) – very scary: https://connect.mayoclinic.org/discussion/help-sshl-very-scary/
@vault, as you prepare to get hearing aids, you might find member advice helpful in the Hearing Loss support group https://connect.mayoclinic.org/group/hearing-loss/ Just put "hearing aids" into the search field and you'll find a wealth of discussions.
Well hello vault sorry for the delay a little busy with my job. So our stories are somewhat similar. I woke up last July with my ears plugged like I had been on an airplane, went to the doctor thought it was a Meniere’s or vestibular migraines told me it was sodium or stress gave me prednisone. It went away continue to come and go back-and-forth on and off and then in October. My left your blocked 100% so my right was already partially deaf blocked 90% put me into a tailspin major vertigo couldn’t walk laid in bed for two days. Back-and-forth on prednisone just like you 60 mg back-and-forth several times I’ve been on it for probably nine months various doses then they put me on methotrexate which wasn’t working at first then they gave me a shot along with the prednisone which they still don’t think either one’s working actually shouldn’t say that the prednisone works which is a good thing so ideally, they should be able to find a drug, but they can’t I did reach out to Mayo clinic for a second opinion waiting to see if they’re willing to see me or not the only reason mine is diagnoses AIED and not possibly the same thing you have is it because mine went bilateral so when it went from one ear to the other they decided it was AIED I’ve never heard of what you’ve been diagnosed with. I was really looking forward to maybe learning Spanish that was probably gonna be sign language. I do have tinnitus as well in both ears in the beginning it was pretty bad they convinced me to do the sound therapy, which when you don’t have tinnitus it’s really easy to suggest what to do the hearing aids. I did get hearing aids right away to be proactive because it does take a while to get them. You got to make appointments to get fitted for them and make sure they set them up appropriately. They do have features in there for sound therapy for brown or white noise or various things to help you get through it. It’s kind of cool is I do the Bluetooth through my hearing aid so I can answer my phone and it makes it really easy to hear what it will tell you about the hearing aids and this comes from me and several other people that I know with them is they don’t help with clarity so you can make things louder and sometimes it can be really uncomfortable, but things still some kind of fuzzy . I was actually going to reach out to my audiologist to see if there was a different type of hearing aid that might be better for clarity, but like you, I’m trying to be optimistic and you seem very optimistic in what you wrote I could be worse, right not sure why it’s happening to either one of us have been told it’s really common in middle-aged women that are type a personalities and people pleasers, which I am that type of person and. I can tell you it’s been a crazy roller coaster right now. I’m trying to wean off the prednisone to see if I can handle how it’s going to be and then maybe stay on the methotrexate. I’ve also gotten mixed reviews on reaching out to let’s call it functional medicine, which is a doctor that would give you like lots of supplements that’s a zoom class a B 12 vitamin D but you’re not supposed to have anything comes from an animal no alcohol drink water which sounds totally boring. Not alone in all of this I am finding based on this Maio connect which I think is amazing because I hate social media and I got kicked off Facebook twice. Just trying to get on Facebook to try to join a group of people with a AIED so this Maio thing is great. And the volunteers and mentors seem amazing. They reach out they connect they have resources. I’m actually very pleased with us. I feel like there’s at least somebody out there that wants to try to help so. Feel free to reach out anytime. Good luck. Keep me posted on how your stuff goes. Once you start to be enough that prednisone.
Sorry I didn’t get back to you sooner. I have good days where I try to do one activity for an hour or so, and then I crash for a few days. I’ve been working on adjusting my expectations for myself. It will be easier once my healthcare team figures out what is happening and I can better manage symptoms as they show up. You offered a LOT of good tips. Thank you! I see my neurologist on Monday. I might have more info then.
I’ll stay in touch. Meanwhile, I’m going to crawl into bed.
Have a nice evening.
I lost my hearing in both ears similar to you except it was sudden – overnight – and did not come and go. I have perhaps 30% hearing. I was diagnosed with another auto immune disease – antiphospholipd syndrome – which causes blood clots in small veins – in my case in the inner ear. But it's very rare. I've not found anyone else with similar diagnosis on Mayo clinic or FB hearing loss groups. It's also reverse slope hearing. Ok on the hight frequencies none in the low. Is yours like that? My experience with hearing aids is very similar to yours. Amplifies but doesn't help clarity or eliminate/reduce background noise. Any noise blocks my ability for word recognition completely. The real value is the bluetooth streaming as you say. Prednisone did nothing for my hearing loss and just put me into an anxiety tailspin. It's been four years now and I'm adjusting psychologically..
Hello, so yes mine will be the high frequencies as well. I’m just starting to reduce the prednisone now looking to see how bad it’s going to actually get trying to determine if the methotrexate is working if it is I guess I’ll stay on it for now. I did reach out to my audiologist, expressing to see if there’s a better hearing it out there that’s better with clarity, I will let you know what she says mine are called Phonax. I basically try to avoid really loud restaurants and encourage the people that I hang out with to just kind of do more of a one on one situation to where I can actually hear them. I think the biggest issue has been the TV I’m not sure if you know this or not, but my hearing aids have the ability by purchasing a device which cost $250 to actually Bluetooth into my television set so if I have my hearing aids in and I walk in my house and the TVs on it will actually sync right to my hearing aids, which I think you agree with the hearing aids out of the Bluetooth you can definitely hear better. I keep telling myself it could be worse which I’m sure you do too. There’s also another device which I’m waiting for which I’ll let you know once I get it again $250 of course but it seems to your Bluetooth so if you hour are out for dinner you can sit in the middle of your table and it should pick up the voices that are in that close vicinity of your dinner Party. I wanted to learn Spanish this year. I think I have to switch to sign language just a little humor and I’ll keep you posted. If I get any more information. Hopefully you’re doing OK psychologically it’s a lot to endure. I’m sure you like I was like what in the heck is going on? Who did I make angry and why is this happening to me but again it could be worse so try to stay positive and optimistic in that light. Have a great day. Thanks for sharing and I’ll reach out if I get any more scoop.