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

Wow, I'm sorry your tinnitus is so loud. Luckily, I have moments of peace, but I am always afraid because I don't know how long they will last. It is difficult to accept this. For now I am not using any masking device, I have enough hearing for day to day life and I do not need a hearing aid. I hope your tinnitus improves with the advice given here. I completely eliminated salt and alcohol. much encouragement.

@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?

I am deaf in my right ear from minear’s Desease. Last November i lost hearing in my left ear and could not understand any speech or music. I was terrified and went to an ENT who said it was AIED wanted to put me
on high dose steroids. I choose to call my Otolaryngologist that diagnosed my Minears. He said it was AIED and sent me to a rheumatologist that gave me a powerful drug for rheumatoid arthritis. I had a bad reaction and he had no other options. I am now going to be evaluated in May for a cochlear implant with my Otolaryngologist at UTSW.

So, in my case it was like the last resort my ENT didn’t think they would work, but I’ve been on such a roller coaster, emotionally physically. It was one of those things where I had to try it. Otherwise, I would regret it, and it brought back to hearing in the left ear, so mine has fluctuated just like yours tinnitus comes and goes. It’s always there, but it gets ramped up really bad, but like Becky had said the volunteer in the United States, I was on 60 mg and I was on it for nine months and every time it started to taper if the situation came back they put me back up so it took a long time but you have to remember an autoimmune disease is inflammation so it’s inflaming your inner ear. Your body doesn’t like it. My rheumatologist had never heard of it before so all he could do is treat what he knows for arthritis. The methotrexate worked in the beginning with pills, but then it didn’t so then he gave me shots and the shots you couldn’t get anywhere for a while unless you 4039, 4029 had cancer because there was a shortage so they went to Humira .
I will tell you having gone through this for the last two years at least in my case things have leveled off if you will your body starts getting used to the fluctuations they don’t happen as greatly and again stay hydrated, low sodium try not to drink a lot.
If it makes you feel any better, the reason I ended up on Mayo connect is I actually applied at the Mayo Clinic to evaluate my situation and they came back and told me that everything I was doing was exactly what they would do so I felt good about that knowing that the doctors here were doing the best they could.

Having a somewhat similar as of yet undiagnosed disorder, I wish you the best of all outcomes in your quest for relief.

I am deaf in my right ear from minear’s Desease. Last November i lost hearing in my left ear and could not understand any speech or music. I was terrified and went to an ENT who said it was AIED wanted to put me
on high dose steroids. I choose to call my Otolaryngologist that diagnosed my Minears. He said it was AIED and sent me to a rheumatologist that gave me a powerful drug for rheumatoid arthritis. I had a bad reaction and he had no other options. I am now going to be evaluated in May for a cochlear implant with my Otolaryngologist at UTSW.

Hello.

I also suffer from AIED which is presumably attributable to my MS. Other studies have linked asthma, allergic rhinitis, Graves disease, hypothyroidism and other autoimmune thyroid disease to Meniere's disease . The nature of these autoimmune diseases in
the development of Meniere's disease have yet to be fully elucidated.

As you have experienced it usually occurs in one ear but may involve both. It is due to an increase in the fluid levels in the endolymphatic sac of the inner ear and increased pressure on the balance structures of semi-circular canals of the inner ear called the organ of Corti.

I'm sure you've experienced many of the symptoms such as feeling of increased pressure in your ear, hearing loss, tinnitus, dizziness, vertigo and nausea. The disease is progressive and has three stages. Most treatments are palliative in nature and may include a course of steroids to reduce immune system activation and inflammation and physical/rehabilitation therapy You may have other medications prescribed to manage your /symptoms: diuretics to reduce your body's fluid volume, antihistamines to blunt allergic reactions, anti-emetics to control nausea, sedatives for associated anxiety and advise you to avoid caffeine, nicotine and chocolates. Some may also prescribe diuretics to help reduce your body's fluid loads.

I also noted that others have mentioned the use of rituximab. While it has been shown to be modestly effective with treatment effect/duration of 6-9 months, it's expensive and has a fairly long list of side effects. Other options you might discuss with your doctor is methotrexate or azathioprine.
Lastly, in some cases a surgical procedure,
called a labyrinthectomy, may be performed on the affected ear but it will result in permanent deafness in that ear which may be mitigated by placement of a cochlear implant.

There are a number of organizations such as the Meniere's Society and the Vestibular Disorders Association that can provide you with excellent, clinically peer-reviewed information on the diagnosis, causes and treatments of vestibular disease. While the Mayo Clinic and this wed-site and discussion groups are excellent sources of information re Meniere's disease, I recommend you look to these organizations for more accurate information on the best treatment options for your disease.