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

Hello,
I was diagnosed with autoimmune ear disease 4 months ago, but I have been suffering from the disease for two years. First they based it on the fact that it was Meniere's, but finally they tested me for cochlear antibodies and they came out positive. No other autoimmune disease came out. The symptoms I have are the same: a lot of pressure, fluctuating hearing loss (now it's been 4 months and it doesn't fluctuate anymore), I have a loss of 60db in bass, and horrible tinnitus 24 hours a day, 7 days a week. These two years I have been taking corticosteroids and intratympanic punctures without good results. Now I am on cortisone 10mg and methotrexate 10mg once a week. It has been the
fourth week of the dose and so far no improvement. The doctor tells me that it takes between 6 and 8 weeks to take effect. Do you know if it is true that it takes so long to know if it will take effect? I am very discouraged since I have lived with only one ear for 11 years, since I completely lost the left one in an intervention. And now I find that my only listening ear is failing me. They have already put me on the waiting list for a cochlear implant for my left ear, but living like this with all these symptoms is really becoming difficult for me.
Thank you very much for all the comments, I am glad to know that I am not alone in this fight.

@montsebarcelona Welcome to Mayo Clinic Connect! I am very sorry to hear about all your problems with AIED. This site is a great place to share with others who are dealing with the same problems. I’m going to ask members @tinae @willows @poc1115 @needanswers7 if they could join the discussion and help you out.
I’m glad you found the Hearing Loss group. They may also help with your problem.
May I ask how you found MayoClinicConnect?

@becsbuddy gracias por la respuesta.
Pues lo conocí a través de @teresaramirez ya que estamos las dos en contacto porque las dos somos de España y nos conocimos en un grupo de redes sociales de meniere.

Having severe tinnitus I applied pressure to my ear as if I was popping it and it makes the tone sound quieter wonder if that has ever been questioned

@sbethplomber1, what do you mean by applying pressure?

I, too, have a list of similar symptoms where I now have minimal left ear hearing. I am 78 years old toward the end of my life, but who knows how long or severe this mid-diagnosed disease may become. It’s scary to think far ahead. Being musical, I can no longer listen to music: all’s distorted. Be brave and carry on the best you can. Enjoy each day for what you CAN do. I wish you only the best of outcomes.
Ray

Put your hand on your ear and push in and out like your building pressure then releasing it

Hello everyone, I have had a crisis for a day and a half, a lot of pressure in my ear, very loud tinnitus and hearing loss again with dizziness. I had been stable for 3 weeks, I am not taking any medication. I don't know what to do. On Tuesday I might be able to see the ENT doctor, but I don't know if I should start taking the 60 mg/day of prednisone again. The ENT doctor told me that in case of crisis, started taking prednisone again. Any advice? Tonight I'll have to take something to sleep, because this noise is unbearable. AIED. 🙁

@teresaramirez I’m sorry that your tinnitus and pain have increased. Must be awful. Didn’t you just take two airplane trips? Have you checked to see if your ears are blocked by wax? I was told by a doctor that excess ear wax is a problem for the with autoimmune disorders. Just something to think about. I can’t advise you on the prednisone because I’m not a doctor. If you’re sure that’s what the doctor said, then it’s your decision. Does the doctor’s practice have an after-hours phone line? You might feel safer asking the on-call doctor.
Will you let us know what the ENT tells you on Tuesday?

I looked to see if Mayo had something on this but couldn’t find it. I did read about it on other major hospital sites. Prednisone is used to treat this condition but other medications can be used as well. With one autoimmune disease that I know of you take prednisone at first but after a while you can go off it, but start again with prednisone when symptoms return. Does your doctor have a patient portal? If so that might be the fastest way to get in touch. Please write again and let us know how you are doing.