1. < Autoimmune Diseases

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.

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tinae | @tinae | Aug 19, 2023
In reply to @cindylb "I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the..." + (show)
@cindylb

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?

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Hi Cindy - I totally understand your predicament with all those other symptoms going on adding more meds to it just makes your symptoms worse I know with the methotrexate sore so I have to take Folick acid other than that the 77 pretty minor prednisone like you right now I’m still in 10 mg unfortunately it’s such a rare situation. They were in the doctors really don’t know what to do. It’s just kind of a game of trying different things which is unfortunate for both of us. I know the hearing loss is huge. Specially, with what you do. I’m sorry you’re going through this.

REPLY
1 reply
tinae | @tinae | Aug 19, 2023
In reply to @tinae "Hi Cindy - I totally understand your predicament with all those other symptoms going on adding..." + (show)
@tinae

Hi Cindy - I totally understand your predicament with all those other symptoms going on adding more meds to it just makes your symptoms worse I know with the methotrexate sore so I have to take Folick acid other than that the 77 pretty minor prednisone like you right now I’m still in 10 mg unfortunately it’s such a rare situation. They were in the doctors really don’t know what to do. It’s just kind of a game of trying different things which is unfortunate for both of us. I know the hearing loss is huge. Specially, with what you do. I’m sorry you’re going through this.

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I talk text, so I apologize that’s mouth sores with methotrexate and pretty minor side effects. Sorry about that.

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Samson | @gregv | Aug 20, 2023

My empathy and reply to all of you. I have had hearing loss since the 1980s, slight at first, now severe. Tinnitus in both ears since 2001 (high pitched "electronic" tone). Hearing aids since 2005 - on that subject someone here claimed that all hearing aids do is increase volume. Maybe the cheap ones, but mine have plenty of tone and specific frequency adjustments for each ear that clarify speech very well. 2018 my right vestibule over pressurized until damage occurred, resulting in 12 to 16 hours of debilitating dizziness, then vertigo, then throwing up (every other day for 6 weeks). My right eyesight also deteriorated overnight. Lots of doctors, PT, and every test known to man later, turns out for me it was a pinched nerve in my neck. So, for me, when the fullness in my ear starts, I can get that under control with neck exercises. I truly wish it were that simple for everyone who has this condition.
All of that is just background. 2022 I reacted to the 3rd Phizer covid booster - inflammation to my already damaged right ear. Only severe dizziness this time, no vertigo. ENTs were absolutely worthless (prednizone only worked while on it, both had nothing els to offer), neck exercises did nothing. Only 2mg valium, 4mg antinausea, and 1 to 2 hours sleep got me through. A ton of research, especially with VEDA (Vestibular Disorder Association) lead me to a PT who specializes in this arena.
I also discovered a slight misalignment with my eyes. Local optometrist and ophthalmologist said it was nothing, but further research lead me to a neuro-ophthalmologist and corrective glasses (needed glasses anyway).
I am to the point of just accepting that the nerves connecting the eyes and ears are somehow slightly damaged and not fixable. VEDA suggested the PT mentioned above to train my brain to recognize that the balance messages from my right ear do not match that from the left and both eyes (all four need to say the same thing). I do my exercises every day (takes about 5 minutes), and with my glasses - no dizziness for the last 3 months.
It took a lot of work to get here, but so far - success. I am back do doing the things I like to do - like my motorcycle and long mountain hikes. Surgery and more drugs are usually my last resorts.
My suggestions include personal research - plenty of vestibule, vertigo, and Menieres websites with peer-reviewed medical articles and studies that you might find give you answers that the doctors cannot. People in the medical professions are just people - they cannot know it all, and I feel it is up to the patient to be a major part of the fix. After all, we are (have) the problem, and although we know best how it effects us, we may not be able to express it well enough. And when they give us homework (exercises to help correct our conditions) DO THEM!
Good luck to all of you, and take care...

REPLY
4 replies
tinae | @tinae | Aug 20, 2023
In reply to @gregv "My empathy and reply to all of you. I have had hearing loss since the 1980s,..." + (show)
@gregv

My empathy and reply to all of you. I have had hearing loss since the 1980s, slight at first, now severe. Tinnitus in both ears since 2001 (high pitched "electronic" tone). Hearing aids since 2005 - on that subject someone here claimed that all hearing aids do is increase volume. Maybe the cheap ones, but mine have plenty of tone and specific frequency adjustments for each ear that clarify speech very well. 2018 my right vestibule over pressurized until damage occurred, resulting in 12 to 16 hours of debilitating dizziness, then vertigo, then throwing up (every other day for 6 weeks). My right eyesight also deteriorated overnight. Lots of doctors, PT, and every test known to man later, turns out for me it was a pinched nerve in my neck. So, for me, when the fullness in my ear starts, I can get that under control with neck exercises. I truly wish it were that simple for everyone who has this condition.
All of that is just background. 2022 I reacted to the 3rd Phizer covid booster - inflammation to my already damaged right ear. Only severe dizziness this time, no vertigo. ENTs were absolutely worthless (prednizone only worked while on it, both had nothing els to offer), neck exercises did nothing. Only 2mg valium, 4mg antinausea, and 1 to 2 hours sleep got me through. A ton of research, especially with VEDA (Vestibular Disorder Association) lead me to a PT who specializes in this arena.
I also discovered a slight misalignment with my eyes. Local optometrist and ophthalmologist said it was nothing, but further research lead me to a neuro-ophthalmologist and corrective glasses (needed glasses anyway).
I am to the point of just accepting that the nerves connecting the eyes and ears are somehow slightly damaged and not fixable. VEDA suggested the PT mentioned above to train my brain to recognize that the balance messages from my right ear do not match that from the left and both eyes (all four need to say the same thing). I do my exercises every day (takes about 5 minutes), and with my glasses - no dizziness for the last 3 months.
It took a lot of work to get here, but so far - success. I am back do doing the things I like to do - like my motorcycle and long mountain hikes. Surgery and more drugs are usually my last resorts.
My suggestions include personal research - plenty of vestibule, vertigo, and Menieres websites with peer-reviewed medical articles and studies that you might find give you answers that the doctors cannot. People in the medical professions are just people - they cannot know it all, and I feel it is up to the patient to be a major part of the fix. After all, we are (have) the problem, and although we know best how it effects us, we may not be able to express it well enough. And when they give us homework (exercises to help correct our conditions) DO THEM!
Good luck to all of you, and take care...

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Thank you for sharing Greg that is a lot of information. I think most of us are trying to read as much as we can, and figure out what to do but like you stated some of it’s debilitating and you just don’t know what to do.

REPLY
tinae | @tinae | Aug 27, 2023
In reply to @gregv "My empathy and reply to all of you. I have had hearing loss since the 1980s,..." + (show)
@gregv

My empathy and reply to all of you. I have had hearing loss since the 1980s, slight at first, now severe. Tinnitus in both ears since 2001 (high pitched "electronic" tone). Hearing aids since 2005 - on that subject someone here claimed that all hearing aids do is increase volume. Maybe the cheap ones, but mine have plenty of tone and specific frequency adjustments for each ear that clarify speech very well. 2018 my right vestibule over pressurized until damage occurred, resulting in 12 to 16 hours of debilitating dizziness, then vertigo, then throwing up (every other day for 6 weeks). My right eyesight also deteriorated overnight. Lots of doctors, PT, and every test known to man later, turns out for me it was a pinched nerve in my neck. So, for me, when the fullness in my ear starts, I can get that under control with neck exercises. I truly wish it were that simple for everyone who has this condition.
All of that is just background. 2022 I reacted to the 3rd Phizer covid booster - inflammation to my already damaged right ear. Only severe dizziness this time, no vertigo. ENTs were absolutely worthless (prednizone only worked while on it, both had nothing els to offer), neck exercises did nothing. Only 2mg valium, 4mg antinausea, and 1 to 2 hours sleep got me through. A ton of research, especially with VEDA (Vestibular Disorder Association) lead me to a PT who specializes in this arena.
I also discovered a slight misalignment with my eyes. Local optometrist and ophthalmologist said it was nothing, but further research lead me to a neuro-ophthalmologist and corrective glasses (needed glasses anyway).
I am to the point of just accepting that the nerves connecting the eyes and ears are somehow slightly damaged and not fixable. VEDA suggested the PT mentioned above to train my brain to recognize that the balance messages from my right ear do not match that from the left and both eyes (all four need to say the same thing). I do my exercises every day (takes about 5 minutes), and with my glasses - no dizziness for the last 3 months.
It took a lot of work to get here, but so far - success. I am back do doing the things I like to do - like my motorcycle and long mountain hikes. Surgery and more drugs are usually my last resorts.
My suggestions include personal research - plenty of vestibule, vertigo, and Menieres websites with peer-reviewed medical articles and studies that you might find give you answers that the doctors cannot. People in the medical professions are just people - they cannot know it all, and I feel it is up to the patient to be a major part of the fix. After all, we are (have) the problem, and although we know best how it effects us, we may not be able to express it well enough. And when they give us homework (exercises to help correct our conditions) DO THEM!
Good luck to all of you, and take care...

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May I ask what kind of heating aids you have. I’m the one that made that comment. I have an Phonak and they were extremely expensive but they don’t help with clarity. I can turn down the volume up or down I can adjust for background noise are having a listen to the people in front of me but definitely not clarity, so I’m curious what you have maybe I can give them a try

REPLY
Samson | @gregv | Aug 27, 2023

Hi Tinae,

I too have Phonak - recently upgraded from Moxi. Yes spendy, insurance helped some. I have severe loss in one ear, moderate in the other. Using the Phonak app (I'm not a techy, mostly inep with phones and apps), but selecting one of the pre-programmed choices, then "adjust program", near the upper right corner is a symbol that, once selected, allows adjustments to bass, middle and treble. For me, this is where I can improve the clarity for speech and music. Once I get the clarity I want, I can save it as a separate program. I also have a transmitter for my TV for further clarity.

Hope this helps.

GregV

REPLY
kewp | @kewp | Sep 2, 2023
In reply to @becsbuddy "@tinae Yes, it is very rare, maybe 15 out of 100,000! You must have seen all..." + (show)
@becsbuddy

@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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6213300/
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:
https://connect.mayoclinic.org/group/hearing-loss/
Have the doctors made any suggestions for treatment?

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I read the ncbi-article. I’m interested because I have bilateral sensio hearing loss that is progressing. Had first h/a 2012, then 2 more since then hoping to hear people talking, not background noise. My audiologist has no suggestions. I do have a personal & family history of autoimmune diseases. I have Autoimmune ITP x4 episodes, Hashimoto hypothyroid & CKD no known cause (I wanted a Bx to see if lupus, but nephrologist says it’s to hard to get to the kidney behind ribs). My sister has lymphocytic colitis & her dtr has systemic LE. My brother had DM1 at age 30, thought to be possible immune (he passed in 2020). All 3 of us are HOH. Ithink I have stand-alone psoriatic arthritis (have enthesis feet joints, heel bone spur, 2 knee replacements, verticals ridges fingernails, and chronic back pain,stiffness); but RA Dr says it’s OA. My dad had psoriasis scalp in his 80’s with ankylosing spondylitis, OA. With all this immune stuff going on, this site makes me wonder if it also affects my progressive hearing loss? Maybe ask my PCP for Mayo referral to hearing clinic or RA clinic? My maternal gm had hearing loss prior to her death in her 50’s. My dad had hearing loss too, was in loud WWII tho. I read that autoimmune such as PsA & now this hearing issue can be hard to diagnose.

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kensiejames | @kensiejames | Sep 21, 2023
In reply to @kensiejames "How were you diagnosed with AIED? What test were done ?? I loss my hearing on..." + (show)
@kensiejames

How were you diagnosed with AIED? What test were done ?? I loss my hearing on April of 2021, directly after doctors performed ear wax removal with a suction device. I had this done once a year for the past 20 years with no issue, but somehow after this last cleaning it effected my hearing. Doctor mentioned the possibility of inflammation in the inner ear.
To date I have lost approximately 40% of my hearing in that one ear . I recently started with sporadic tinnitus in that one ear .
I went to see a Rheumatologist that tested me for autoimmune disease but test were normal range. Are test for AIED the same as other autoimmune diseases? Is it possible to be seronegative and have AEID?

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Thank you for your response!!!
I was actually inquiring for a friend. I told her about this site but she didn’t want to go on here, so she sent me the write up and asked me to post it on her behalf. 🤷‍♀️ I shared your comments with her.
So far nothing has changed, at least it doesn’t seem to be progressing.

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bchapman | @bchapman | Dec 16, 2023
In reply to @cindylb "I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the..." + (show)
@cindylb

I am newly diagnosed with AIED and Sjogren's Syndrome. I finally got a diagnosis for the Sjogrens (although I've suspected for many years) because I have lymphoid hyperplasia in my eyes. Now it's my ears. I just finished a high dose taper of Prednisone and it completely resolved my ear problems but as soon as I stopped the AIED came back. So far I have low loss of hearing (but I also teach and play piano professionally so I'm keen on not losing my hearing) but.....the meds, even just the prednisone, which works for me, is causing me to have oral thrush, vaginal yeast infections and I also have diarrhea not releated to any of this or? This past 6 weeks have been awful. I am to start more prednisone but can't due to the yeast and despite many stool tests, no reason for the diarrhea. I am also taking Pilocarpine (but not right now) to increase moisture in my body. It works for me but the doctors can't figure out why I've been so sick....which med, etc. I am to start Methotrexate for the Sjogrens and AIED and want to resolve the hearing and associated dizziness, fullness, pain, headaches, but I can't until I figure out how to handle the stomach issues. I'm not good with most drugs and very anxious and miserable at this point. Not sure if Sjogren's, AIED, the meds or something else is causing my symptoms. More doc appointments this week but it feels very wobbly with them.....no one seems to know exactly what they're doing?

Jump to this post

I'm just starting this journey. Dx of AIED. Tinnitus bad in left ear, plugged, full etc. Food seems to play a part in the severeness. Anyone have a diet that helps?

REPLY
1 reply
cpd54 | @cpd54 | Dec 17, 2023
In reply to @bchapman "I'm just starting this journey. Dx of AIED. Tinnitus bad in left ear, plugged, full etc...." + (show)
@bchapman

I'm just starting this journey. Dx of AIED. Tinnitus bad in left ear, plugged, full etc. Food seems to play a part in the severeness. Anyone have a diet that helps?

Jump to this post

Why not try the autoimmune protocol diet? Very restrictive but it got me on the right path. There are tons of info on the web to help you but I basically ate meat and certain fruits and vegetables for about 3 months. This diet and working with my functional medicine doctor fixed my gut. My other symptoms decreased immensely in severity.
Just a side note, I also have Sjogerns. I started taking MK-7 at a dosage of 182 mcg a day for osteoporosis. I’ve noticed that my mouth is not as dry.

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