Hearing loss and AA (or AAP)

Hello all, first time poster. I am curious if anyone else has had issues with progressive hearing loss and AA. I have read a lot of posts and some doctors state that the type of cells in the hair follicles and the hair in your inner ear (cilia or stereocilia) are completely different so it is not possible. BUT I have also read from some people on here that they experience ringing in the ears (tinnitus). I am just curious if any of those people have also got a hearing check and if they have been diagnosed with a loss of hearing; mainly on the high frequency.  I have come across a few scientific studies published that have showed a correlation but it seems this theory is not widely accepted in the medical fields.

A little background: I have AAP. Been dealing with my condition for over 30yrs. I had a full head of hair until I was 4yo then I lost it all at once, in a period of a couple months. I had AT for the next 3-4yrs then my hair started to come back but I have always had AAP since. I have been shaving my head since I was 20yo to cope. Now at 35yo seems like it is getting worse...lost one of my eyebrows recently. When I was around 17yo I started to notice ringing in my ears. By 22yo I went to an audiologist and found that I had some significant hearing loss for my age, in the high frequencies. They wanted me to see an ENT, I went to one and they did an MRI and couldn't find anything wrong with the auditory nerve. Over the next 12-13yrs my hearing has gotten worse (based on multiple hearing tests throughout that timeframe.)

Thanks in advance for your input!!

Robert

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Permalink Reply by Mary Lou on July 7, 2016 at 6:31pm

I have had Alopecia Areata for twenty years and do not have any ear problems.

Permalink Reply by Zingmama on July 7, 2016 at 8:02pm

I was so interested to see this chain.  I have had AA for around 10 years--onset around age 55.  About two years ago, I noticed that my right ear felt clogged and my hearing was profoundly affected.  I went to an ENT who confirmed a loss of around 30% of my hearing and said it was sudden sensorineural hearing loss, possibly associated with Meniere's Syndrome.  He prescribed a tapering dose of steriods.  By day two, my hearing had completely returned and by day 10 I had cleaned out every closet in my house with boundless energy.  I get why they are performance enhancing drugs.  It's happened several more times and each time the steroids helped.  On suspicion about the hairs in our ears, I did ask about a connection but the doc said he'd never heard of that. Six months ago-ish, I developed tinnitis which has definitely also been helped, though not totally alleviated, by the steriods.  Today is Day 10 of 12 on steroids (I just happen to be going through it again right now) and I"m off to scrub a floor or two.

Permalink Reply by diana on July 7, 2016 at 9:44pm

I have scarring alopecia due to stress about 4yrs ago.  Also have tinnitus that improves or gets worse depending on what I eat.  Certain foods cause inflammation in the body ... any condition ending in "itis... means inflammation.  Record what you eat and symptoms and u can probably figure out the cause.  This means you have food intolerances and can get checked..  I had IGG and iGe tests done and have a long list of foods to avoid or eat in moderation.  It does help.  Try it out and good luck. 

Permalink Reply by marybeth on July 7, 2016 at 10:55pm

what is an IGG and IGE test? what type of Dr. did you see?

Permalink Reply by marybeth on July 7, 2016 at 10:52pm

Hi Robert,

that is a  very interesting concept because i have AAU, it will be 2 years in november that i completely lost all of my hair, eye brows, eye lashes and so on. i had a hearing test when i was 49 yrs old and then again when i was 50 i am 52 and i was told i needed hearing aids because i have moderate hearing loss for my age as well. and i too have the ringing in my ears It is much more noticeable when i am alone in a room. i would have never though the two are connected. It was the ENT who told me about the hearing loss after my exam with the audiologist who works in the same office. I am now wondering if the two are connected, So now what?  Any suggestions?

Thanks 

MaryBeth

Permalink Reply by Zimrie on July 7, 2016 at 11:47pm

Thanks for posting, I never knew about the connection between Alopecia and hearing loss.   To answer your question, I also have ringing and banging sounds in my ears and have had AA  for around 30 years.   I can still hold a conversation most of the time. I had MRI once to find out why my ears were banging and they decided that I had hypoglycemia.    I do not think I'm getting progressively worse but instead my ears have stayed the same.   Most times, it isn't severe enough to bother me.   

Permalink Reply by Robert Davis on July 7, 2016 at 11:56pm
Thanks everyone for your replies and sharing personal experiences. It is somewhat comforting to know that I am not alone. I am by no means an expert on this subject, just done some digging into the research out there.

Just like the alopecia, I have found no cure to the hearing/ringing issues. Just learned to cope to with it. I am in my mid-30s and I am having to now upgrade from CIC hearing aids to more powerful BTE ones.
Permalink Reply by Three Stay on July 8, 2016 at 6:55am

My daughter got a tumor in her ear at age 4.....during all that is when her Alopecia began.  She is partially deaf in her left ear and I never put the 2 together.  Thanks for posting this. 

Permalink Reply by Chris on July 8, 2016 at 10:42am

I have also experienced hearing loss that I believe may be due in part to my AU.  I have asked my audiologist to see if there have been any studies about it but so far no information.  I have always thought that there must be a connection with the cilia and my hearing so was glad to read that I wasn't the only one. 

Permalink Reply by Robert Davis on July 8, 2016 at 11:08am
Permalink Reply by Teekay on July 8, 2016 at 7:21pm

After I commented on your post yesterday, I mentioned it on my local Wellington support group, Wellopecia, to see if anyone had had problems with their ears.  Everyone who has got back to me so far all had repeated ear infections as a child and/or glue ear with grommits.

Permalink Reply by spring on July 9, 2016 at 8:15pm
A lot of people have tried drugs called Low dose naltrexone it's about $40 a month with out any insurance(very inexpensive) and also Xeljanz(they have a hard ship program that covers the cost for free) and there are a lot of clinical trials for aa that have regrown hair.I used a low level light brush from hair max(it regrow some /a lot of my hair).I don't really have any information on hear loss related to this.best of wishes to cure this ..

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