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#463131 - 02/19/12 02:28 PM Suddenly Deaf in Right Ear
overcomer Offline
Steel_AS_Kicker

Registered: 04/15/05
Posts: 1167
Loc: Ontario, Canada
Hi guys,

It seems like forever since I last posted here...

In the meantime, I've been crazy busy, returning to work full-time, fostering my 2 young nieces and other issues which make time to go online at all seem impossible.

As a synopsis, I was Dx'd with AS in 2005, although suffered with symptoms for about 13 years prior to diagnosis. I'm HLA B27+, have been on Enbrel since Dec. 2006 with great results, and had not had an iritis episode since 2005, until Jan.29 of this year, when I got it in my right eye for the first time. I caught it early and am now tapering off the Pred-Forte, down to 2 drops daily at this point, and presently I am being treated for sinusitis. (Third time since we got the kids last April)

What came as a shock, however, was the fact that I went suddenly deaf in my right ear this past Tuesday evening, Valentine's Day. I rushed to my doctor the next day and have been referred to an ENT doc, but am still waiting for an appointment. Thursday was awful, suffering with severe vertigo and vomiting (although I had been having occasional dizzy spells since before Christmas). I came across this website in my research and am now wondering if there is a link between AS and sudden hearing loss. http://www.dizziness-and-balance.com/disorders/autoimmune/aied.html I had no idea there was such a thing as Auto Immune Ear Disease, AIED for short, much less that there may be a link with AS. For the most part, I felt, aside from osteoarthritis of the spine pain, that my AS was being well-maintained. I've had tinnitus for many years now, largely due to NSAIDs for my AS (which I had to go off of due to high creatinine levels from my kidney's-so they are off the drug-menu).

I'm hoping that by posting my story here, I may receive some feedback on whether there are any others out here that know anything about AIED with AS, how this can be managed, perhaps get some support. I'm quite scared and struggling with all of this.

Presently the kids are on visitation with their parents for the weekend, but there are a lot of demands with a strong-willed 5 year old that I need to manage, besides being almost constantly nauseous and dizzy with chores demanding to be done and the fact that I work full time and have the better income of the 2 of us, but I have no disability insurance benefits should I become sick and will have to work no matter what.

Another concern, is what if the Enbrel is failing???

I will see my Rheumy on the 27th, but that seems an eternity away right now...

Thanks in advance, Sigrid
_________________________
Blessings, Sigrid

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#463141 - 02/19/12 03:49 PM Re: Suddenly Deaf in Right Ear [Re: overcomer]
Alida1 Offline
First_Degree_AS_Kicker

Registered: 09/07/11
Posts: 160
I will keep watching to see if others respond, this is interesting to me since I have had vertigo, dizzyness and nausea in spirts for the past 3+ yrs

Good Luck!


Edited by Alida1 (02/19/12 03:49 PM)
_________________________
Where your mind goes your life follows

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#463147 - 02/19/12 06:37 PM Re: Suddenly Deaf in Right Ear [Re: overcomer]
seb Offline
Sergeant_AS_Kicker

Registered: 02/17/10
Posts: 578
Loc: New Zealand
I have been having problems with my ears. Recurring ear infections that never seem to go away. I read that it may be related due to the neck being out of alignment with AS? I've also wondered if there is a link between hearing/ear problems and AS and waiting to see if others have any insight. I hope that there is no link as my dream career would be to be a music producer and I hope another dream isn't shattered.

Interesting to see what others think...

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#463148 - 02/19/12 07:43 PM Re: Suddenly Deaf in Right Ear [Re: overcomer]
Gerri54 Offline
Warrior_AS_Kicker

Registered: 08/30/11
Posts: 498
Loc: Ontario, Canada
I've had inner ear problems all my life. I have been diagnosed with auditory processing disorder. I have ongoing ear infections, with vertigo (ringing, hissing, roaring ongoing), HLA B27+, sacroiliitis (AS and/or PSA), sjogrens, lupus symptoms (dsDNA triple last tested - not diagnosed yet). This past year I've had many times where I haven't been able to hear out of my ears.

I've found rincing my ears with water help to get the black infection out of my ears. The last time the audiologist said I also had a inverted ear drum.

I have asked to be tested for AIED. It has been written that with AIED, people are known to have Audiotory processing disorder.

Hugs
Gerri & Makaylah
_________________________
KickAS member since 04/22/06
Psoriasis(72), AS(2006), PsA with Spondylitis(2011),Vitiligo (69), sleep apnea (2004), Bronchial Asthma, many allergies, anaphylaxis allergy to sulfites, diabetic, Vitamin D deficient - Celiac/fructose intolerance/malabsorption - many co-morbidities

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#463149 - 02/19/12 07:46 PM Re: Suddenly Deaf in Right Ear [Re: seb]
jroc Offline
Decorated_AS_Kicker

Registered: 10/30/08
Posts: 728
Loc: New Zealand
Unfortunately hearing loss is more common in AS patients than the general population
- http://oto.sagepub.com/content/145/2_suppl/P211.3.short
- http://journals.lww.com/md-journal/Abstr...nts_With.2.aspx
Whilst we can generalise and say that AS patients on average have worse hearing than controls, each individual is a unique case. Some people with AS experience minor hearing loss and others don't have any hearing problems at all. For those that do it seems to be mainly higher frequencies >10khz that aren't that important anyway.

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#463155 - 02/19/12 09:44 PM Re: Suddenly Deaf in Right Ear [Re: overcomer]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 418
I don't have hearing loss, but I am a Mom to a 6 year old and I also have AS and recurrent sinus infections. My sinus issues started as soon as she started going to school. My blood pressure drops to 80/50, get vertigo, dizziness and occassional migraine with vomitting. My ears are still bugging me now (crackling and popping sounds) and I was on three antibiotics the past couple months for a sinus infection. What has helped me the most is seeing my ENT doc regularly and eating raw onion and raw garlic, and drinking apple cider vinegar.

Also, your sinus infection may be related to your ear issue. You may be more prone to more severe sinus infections being on Enbrel, as that was the case for me, so I gave up on Enbrel due to those reasons.

I am on Prednisone and gluten free diet, no egg and no dairy now.

Hope you get some answers soon!

Shari
_________________________
Meds: Simponi, LDN 6MG, Prednisone 1 mg daily, Armour thyroid, Metaxalone, Methylprednisolone dose packs for flare ups, Amitriptylline for migraines

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#463168 - 02/20/12 01:46 AM Re: Suddenly Deaf in Right Ear [Re: overcomer]
lila Offline
Active_Member

Registered: 01/26/12
Posts: 72
Loc: N.S. Canada
I asked a question on a different issue yesterday and was provided with a link. In that link I read about Meniere's disease and AS. I had a severe episode of vertigo several years ago. I feel for you. It is awful. I most certainly hope you are feeling better and have suffered no permanent hearing loss. For me the cause was unknown and I was treated with Serc. It help me get through and then it resolved (has not reappeared). I didn't study that portion in particular but it was written about in that page.

http://www.valdezlink.com/pages/autoimmune.htm

Take good care of yourself and be careful not to fall with the vertigo. There is no doubt you are scared. I would be too. Loosing your hearing in an ear suddenly would scare anyone, I am sure.

Shel
_________________________
[font:Comic Sans

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#463176 - 02/20/12 06:31 AM Re: Suddenly Deaf in Right Ear [Re: overcomer]
Winter Offline
Black_Belt_AS_Kicker

Registered: 12/01/10
Posts: 418
Sigrid: I was half asleep when I posted you last night. It sounds like you have a lot going on - managing a chronic illness, working full-time, recurrent sinusitis and fostering your two young nieces. You may want to look into Social Security disability forum since you don't have disability insurance.

I found continuing to work full-time and being a Mom was not doable. I was getting recurrent hives, chronic strep with tonsillectomy and recurrent sinusitis. Now that I don't work, I am managing my disease much better.

A strong willed 5 year old is hard to deal with. Stay consistent with your discipline and give lots of positive reinforcement and attention to your niece. The house chores shouldn't be a priority. Just stick with cooking healthy meals and sanitizing kitchen and bathrooms. Let the other chores go.

Hope you get your hearing back. Please keep us posted.

Shari
_________________________
Meds: Simponi, LDN 6MG, Prednisone 1 mg daily, Armour thyroid, Metaxalone, Methylprednisolone dose packs for flare ups, Amitriptylline for migraines

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#463186 - 02/20/12 10:40 AM Re: Suddenly Deaf in Right Ear [Re: overcomer]
Laurel64 Offline
Journeyman_AS_Kicker

Registered: 02/18/12
Posts: 126
Loc: West coast, B.C. Canada
Hope things have improved for you. I just read some stuff about enbrel side effects on the weekend...Mayo clinic, you might want to read thru it if you are still having a problem with
balance and hearing.
_________________________
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13.
Fibromyalgia Diagnosed Feb. 2013
methotrexate and Enbrel
Started LSD Feb 2012
Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium.
I am so much more then my symptoms:)


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#463187 - 02/20/12 10:50 AM Re: Suddenly Deaf in Right Ear [Re: overcomer]
cemc Offline
Major_AS_Kicker

Registered: 01/25/10
Posts: 2008
Loc: UK
My dad had hearing problems and odd balance and dizziness problems that I wonder might have been related to his spinal arthritis (not diagnosed while he was alive). My nephew also had some really odd hearing problems as a young lad (aged around 8-10) in that he would on some occasions test as having quite severe hearing loss, and other occasions virtually normal. As far as I am aware he hasn't had any further hearing problems since being diagnosed with coeliac disease and going on a gluten free diet (i.e. since an autoimmune condition that was affecting him badly was dealt with). At 18 I think he could well have AS as he does have quite bad lower back pain that fits with it being inflammatory.

I wonder how many doctors are really aware of AIED? Is it yet another totally underdiagnosed condition?

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