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

Basically, regardless of hearing or dementia it’s about being lonely you’re 100% correct if you don’t have anybody to talk to or share life with which is unfortunate because a lot of people don’t really care about other people. I have a great circle of friends and family and if this does go south quickly, I would hope to get to quickly implants faster than later. I do know that they were talking about the benefits of the pros and cons between hearing aids and CI’s and the CIA’s went out because all the hearing aids do is make everything louder not clear which I can attest to that with my hearing is really bad they don’t do anything. I will continue to reach out to you been a blessing in my life. Thank you.

I remember writing my rheumatologist a letter and handing it to him about seeing myself as one of the homeless crazies in Pioneer Square. I knew I could never say that out loud to him. But I also knew that I couldn’t work the way I was, much less look for a job where I didn’t have to hear. Things looked pretty damn scary at that point.
The vertigo sounds REALLY awful.

Hi Becky, thought I would just give you an update. I’m trying my last effort at three consecutive prednisone shots in my left ear. I need to stay on all the meds for now to keep the right ear stable but I do have an appointment set up for a cochlear implant evaluation. Which, as you know you have to qualify for one, as of right now they don’t feel it would be an issue but the insurance company historically will deny it at least two times so I’m thinking by the end of the year. If the shots don’t miraculously cure the problem, which I don’t feel it’s going to, but I needed to at least make sure I did everything possible, I will be getting my first CI in my left ear. We will see what happens as I start to wean off the medicine. I may get the second one by the middle of next year but I’ve come to terms with it, could be worse, they are going to connect me with a few other people that have CI’s just to talk to it see how they feel, where they are. They try to set you up with some peers that have a similar situation as you, so hopefully that will be a positive experience. I will keep you posted. Thanks again for sharing your story.

All good wishes on your journey. You’re having quite an experience

Hello Beckyseattle, Tinea and others in this discussion. As mentioned, hearing loss is a difficult thing to deal with. It's also quite common, especially as we age. Did you know that close to 17% of the population of the United States has hearing loss? It's important to know that many children are affected as well, and it is a growing problem among young adults due to noise exposure. The fact that it happens more frequently as we age adds to stigmas that tend to surround it. That keeps many people from doing something about it. They don't want to 'be old', as if not doing anything would make a difference.

Typically, most hearing loss happens gradually over years. In many cases of progressive hearing loss, the individual who has it is less aware of it than others around them. Many also deny it. Also, those false stigmas that associate hearing loss and deafness with lack of intelligence take a toll.

Of course, it's different when hearing loss happens suddenly. Sudden sensorineural hearing loss is far less common. According to most research literature, the most hopeful method of reversing sudden hearing loss is with steroids that are given within a few days of onset. If that doesn't happen, or if the steroids don't work, cochlear implants may be a possibility.

Cochlear implants were considered experimental procedures 30 years ago. Being experimental, they were not covered by insurance or Medicare. Since the early 2000s, they have been proven to be effective and providers have been much more likely to cover costs.

It is true that people are sometimes denied coverage. However, when one has gone through the proper diagnostic procedure and has been determined to be a candidate for a CI from a reputable CI center, the surgery center AND the manufacturer of the chosen CI brand will help negotiate financial support. It's a process and it may take some time. In some instances, it is approved quickly. There are some variables out there that we have little control over.

Hearing loss is frustrating. People who have it get cut off from people who lack the patience to help them. This is often because those people don't understand what happens. They may think we are not paying attention. Perhaps they think we don't care or are unable to think clearly. This is complicated further by the reality that the hard of hearing person doesn't know how to help themselves very well. Everyone gets stressed out. And, the person with hearing loss gets exhausted trying to participate in communication. Auditory fatigue is real.

I highly recommend becoming a member of The Hearing Loss Association of America. If there is a chapter of HLAA in your area, attend their meetings. HLAA is primarily a peer support group that shares information about hearing loss from the bottom up. If there isn't a chapter of HLAA in your area then think about starting one. All chapters begin when a few people with hearing loss come together to talk about it, and begin to realize that learning more about it is a key to managing it. Online discussion is good too, but the in-person discussions are amazing. There is lots of information on the organization's website. http://www.hearingloss.org

Through meeting other people with hearing loss in person, feelings and frustrations are validated. There are millions of others who 'get it' and will talk about it. HLAA just held a national convention last month. Presentations are all held in rooms where 'communication access' is provided. They are captioned, looped, and some have interpreters. To be honest here, few of the hard of hearing population need interpreters as they don't use American Sign Language (ASL). Technology is the key to communication access for most of us.

Check out the hearing loss support group on Mayo Clinic Connect. Many things I've mentioned in this post are discussed.

Does hearing loss cause dementia? Probably not, although some research indicates that people with untreated progressive hearing loss become socially isolated. Isolation of a formerly social person can easily lead to depression, and not caring about doing anything socially. When we don't care anymore, we appear less smart.

It's all connected. How can we 'disconnect it?

I’m a newbie here. I have had AIED for four months. I have read many of your posts and it’s comforting to know others are struggling with the effects of this condition but are managing. I have all the typical symptoms. Hearing loss, dizziness, imbalance, tinnitus , fullness in the ear. But I am so tired all the time! I’ve always been an avid gardener and active even though I’m 76 years old. Now I can do very little without being totally exhausted. I have to take afternoon naps just to get through the day. Does anyone else have fatigue associated with AIED?

Hi Nancy, I’m sorry that you’re going through this I’ve been diagnosed for about nine months. I am always tired and kind of in a fog but I’m attributing that to the prednisone that I’m on her you on meds?

I do not know what AIED is but I am told that I have three auto-immune diseases. Lets see . PsA psoriatic arthritis, rheumatoid arthritis and at age 86 I cannot remember he third. The SHPTD has thrown away my secondary the diabetes type two. It is slowly eating up my body. But the worst is "Secondary Hyperparathyroidism. It has thrown away the diabetes type 2. But still check the blood in the morning as it might sneak back. So, keep the pills on hand just in case. It also has another goodie "COGNITIVE DECLINE". iSN''T THIS JUST A WONDERFUL THING. Also now have severe osteoarthritis. Who else is as lucky as I? B U T : I am pretty sure I have a real beauty PHEOCHROMOCYTOMA. In other words (the ones we can understand) A growth on the top of each kidney that among many, many other things brings the blood pressure much over 250 over the other. No medications will help and this causes severe aortic valve prolapse and so far moderate mitral valve prolapse. Let us see who will win, the heart or the kidneys? It also creates the secondary hyperparathyroidism. I am 86 but fit I walk two or more miles a day and do a great rock and roll ,jitterbug. If some of us oldsters can still keep up the beat why wont the surgeons remove the two critters on the tops of my kidneys? II am willing and will sign away. because this is starting to BRING ME DOWN. IF THIS IS THE NEW REGEIN PUT THEM IN MY PLACE FIRST AND THEN LET THEM SEE. I worked all my life and paid my New York taxes to deserve my chance to live a little longer. yah and clap y'all. Brooklyn Barbara

I was on prednisone for 4 months. My hearing got better for a few days then got worse again. Then I got an injection in my ear, and nothing got better for 2 weeks. My hearing came back but only lasted a few days. I was referred to a rheumatologist and have had lots of labs done. I have appointments with the ENT and rheumatologist in 3 months to determine what to do next. I attributed all my symptoms to prednisone, but I’ve been off it for 2 weeks and still have fullness, brain fog, dizziness and fatigue.

@nancy1947 I’m afraid that fatigue is a big part of autoimmune diseases. It’s one of the most difficult things about AD. Like many others, I’ve learned to manage it since I really can’t control it. I think you might like this discussion about how others manage their fatigue.
https://connect.mayoclinic.org/discussion/how-do-you-plan-your-day-and-conserve-energy-are-you-a-spoonie/
I think the original story, in which the author explains how she came to write the theory, is included.
Don’t give up hope. You will learn to manage it and go on with your life.
Will you let me know how the spoon theory can help you?