AIED..Auitoimmune inner ear disease
 

Hello all..

I was wondering if any one on here has AIED? I was diagnosed 2 years ago with this and was supposed to take methotrexate for it but i never did bc the doctor was a jerk and dindt answer my questions... but I am now loooking into getting treated for it bc my symptoms have gotten steadily worse.

I was first diagnosed with menieres dz and then sent to a specialist that did bld work and said it was AIED and only suspected this because i have RSD and hypothyroidism.. both autoimmune.

So my questions are , what are you taking for treatment and has it helped with the ringing and vertigo spells that hit. and do hearing aids help with the hearing loss?

Thanks for the help!!

~Amber

Hi Amber,

I had similar symptoms associated with a B12 deficiency. The ENT originally suspected Meniere's or BPPV. I also have autoimmune thyroid disease. Pernicious anemia is yet another autoimmune disease where one lacks the intrinsic factor to process B12, leading to B12 deficiency. Other things can cause B12 deficiency, too, like continued use of antacids, gluten sensitivity/celiac disease, or other malabsorptive disease.

I had crackling, buzzing, ringing, and painful pressure in my ears, muffled hearing, and vertigo attacks. For me, the symptoms all resolved when I corrected the B12 deficiency.

So...given you have thyroid disease which puts you more at risk for both pernicious anemia and celiac disease... you might want to ask to be tested for these conditions if you haven't already been. Especially check your B12 level if you haven't ... it is such a simple thing to correct, and the symptoms are usually reversible. Lab lows are set around 100-150, but you want a B12 level in the upper range. People with levels as high as 350-400 commonly have neurological problems. You can check out the B12 deficiency page in The Gluten File, just scan the right bar until the very bottom. Gluten sensitivity itself can also cause neurological problems, but the specific antibodies associated with neurological disease are just beginning to be researched.

Cara

OK I had bld work done this morning, i had them draw a full thyroid panal.. bc they only usually test the TSH to monitor my levels and also had them draw a B12 level.. soo hopefully this will shed some light on to alot of my prob's.. i will let you all know what comes outof it.. they said i should have them by thurs at the latest..

Thanks
Amber

I have ear problems that my ENT said were likely autoimmune related, but I didn't know there was actually a condition called autoimmune inner ear disease. My B12 levels are fine despite having celiac disease (I did supplementation for awhile though). But I have other autoimmune ailments that could be contributing.

I have not done hearing aids as they are quite expensive and my insurance won't cover them. I have not found anything that will help with the tinnitus, but I have grown accustomed to it despite it being quite loud. I tried a few medications (Valium and Meclazine, I think?) for the vertigo, and they helped some, but I didn't want to stay on them long term, so I tried something else.

What worked much better for my vertigo was vestibular rehabilitation. It's basically physical therapy to retrain your brain and body to work together when you're dizzy. I went from nearly falling down everytime I stood up to being able to stand on an uneven surface on one foot with my eyes closed.

I still get vertigo episodes, but I am able to cope with them. I've learned where to focus my attention to keep its effects to a minimum. I bump into things once in awhile, especially in the dark, but I no longer get the nausea and swimming head sensations.

Looking forward to finding out the results of your tests. Would also like to know if anyone else AIED.

fanfaire:cool:

Hi Fanfaire,

I never heard of it before and i worked in the medical field for 10 years.. here is a link to a site thats informative... I think if people read the article and took it to there docs i think there would be alot more aied patients then prob menieres bc its soo rare, but not much known aobut aied.

http://www.american-hearing.org/diso...utoimmune.html

I am on prednisone for mine and still have break through vertigo spells and i have learned to cope with them to a point.. i can notice when i get them and focus on something and press on my temples to get them to go away.. My doc has suggested a hearing aid for my bad ear, but my insurance only covers 300.00 of it and the one i need is like 1200.. ahha.. im on SSD.. and cant afford rent.. sooo.. i deal with the hearing loss ...lol

I am only 29 and have too much on my plate and stuff just keeps on piling up.,. just wish i could scrape some off soon!! lol

Talk to u soon!

Amber

Wow! Excellent link! My ENT suspected my ear problems were likely caused by my Sjogren's syndrome.

However, the paragraph on "Intolerance" was really interesting. I have been 100 percent deaf in my right ear since I had spinal meningitis when I was seven years old. I wonder if this predisposed me to future problems with the left ear?

Yeah, I understand about being on SSDI and not being able to afford "extras" that should really be essentials. I hope your plate stops piling up too. It already sounds full enough. :eek:

fanfaire
:cool:

My docs here locally thought it was all menieres dz and said there is nothing to help the hearing once its gone.. but then went to a university aobut an hour and 1/2 away from me and got the AIED diagnosis and that if i do become 100% (im not 80%) or if sooner if i want to , that i can go in and have a cochlear implant done and i will be able to hear out of that ear. Have you been given that option??

:winky:
Amber

I also have a inner ear problem and I have had several autoimmune problems. mine are Graves Disease, RSD, Asthma, Celiac Disease?, Osteoporosis and low iron levels. i had not thought about either AIED or low B12 symptoms. My B12 ws ok last time I checked.
But this is food for thought and considering the other problems with inflammatory problems, it might be the cause. One other cause of lack of balance is dehydration. Now that is something I can relate to as I often forget to drink water.

Jocelyn,

Have you been diagnosed with AIED?? and are you taking meds for it??

Amber

Following this link...I saw a possible issues with low magnesium and low B12 for these types of problems. ???
http://www.ctds.info/5_13_magnesium.html