More Tinnitus and question about ENT for Sjogren's

[Pete0211]

Thanks, Deadgirl75

[irish]

When we have Sjogrens we also need to keep an ENT in the wings because of our propensity to develop these strange balance and hearing issues. AUtoimmune ear disease is also possible. I started to lose my hearing in 1996 and had a horrible ear infection about a year prior to that. My hearing loss started to me noticed in the summer of 97 and my 98 I was deaf except for garbage sounds which were just a bother and also mixed in the the tinnitus and drove me even more crazy.

I was offered 100 mgm of prednisone for 1 month to stop the hearing loss and I turned it down. I knew from my experience as a nurse that a dose that high might drive me to a psychosis that I might not recover from. I told the doc I would take the deafness. Back in those days the prednisone orally was pretty much all they could offer for the autoimmune hearing disease. They didn't have a lot of the drugs either.

Interestingly enough, now that I have lost half the hearing in my good ear and had blood testing and show 2 different antibodies killing my hearing, my immunologist informed me that steroids are pretty much the only thing that can halt the autoimmune ear disease. So. I had 5 months of IV pulse steroid of 1000 mgm solumedrol over 2 hours once a month.  I finished that in September, had hearing test done and have lost not more hearing. My doc wants me to do 6 more months of the steroids as I have such aggressive ear disease.

I have not been able to do this yet as I have had so many other autoimmune issues and hard to tell what is going on with me. It should be noted that many people with autoimmune ear disease (AID) will wake up in the morning being deaf in one ear. This is considered a medical emergency and people need to get to the doc or ER as sometimes having the pulse steroids started immediately will bring the hearing back or at least some of it. Just some personal experience info for you. Irish

[cccourt1942]

I've been to the doctor!!    Actually..seen three in two weeks.  Check ups always coalesce in my life!  Anyway, strange doctor, spot on advice: Was at the neurologist's and he was asking about this and that, and he mentioned my balance.  I have a separate condition about which I was told not to discuss here...but anyway...suffice it to say when suspecting this condition, he did a screening for Alzheimer's.   One of the last things they do  is ask you to walk a straight line.  I can't.  Now this was about 2 years ago...and yesterday he asked again.  I couldn't do it (of course) but then he went further.  I walked up and down the hall, did a couple of things.  He asked more about my balance, I mentioned the tinnitus, and reminded him I'm old...and told him I had accptd I had Meniere's...tho not severe as I know it will get.  He asked, "you're losing your hearing?"  I said no..and he quickly (and assuredly) stated I didn't have Meniere's.  I reminded him of my profession...and he said we probably had about the same amount of education regarding Meniere's but he was pretty sure Meniere's (as opposed to just tinnitus) ...repeat---Meniere's was dxed with tinnitus AND hearing loss.  I don't know if I ever realized that, forgot that, or failed that question on the test. 

Bottom line about this topic AND discussion:  he continued about the balance...asked a  couple more questions...and told me I would be getting a phone call from PT at the hospital where I would be evaluated and he hoped a therapy plan would follow for ...drumroll :  BALANCE.  Then he said I should see the ENT about the tinnitus.  I told him there was really nothing to do about it.  He nodded...I left. 

Timely thread followed by successful physician visit acknowledging...even though from a neurologist!  Go figure.
c3

[irish]

Well, that hit the nail on the head. The PT will help you. I didn't believe that PT could help balance but it does. We are so in the dark about so much that our body can do and it always amazes me how well people can really get along with a disability-so to speak- and the ability to endure through them. Good luck. Irish

[ignatz]

I've been reading this thread with interest. I suffer from hyperacusis and tinnitus, something that started about a year ago. On my bad days the tick tock of my wall clock was too grating and the compressor noise from the fridge much too loud. I became a shut-in because even the noise at a restaurant was too much.

I did see an ENT and he didn't find much, some hearing loss but he felt it was in line with my age (55). I don't have balance issues so I guess that rules out Meniere's.

I mentioned this to my Rheumy and he unequivocally stated that this symptom had nothing to do with my AI and offered no treatment.

I bought some fancy noise canceling ear plugs which helped with the noise sensitivity but intensified the tinnitus, so that was a wash.

Finally out of desperation I started myself on 5mg prednisone daily and that gave me some relief, far from cured but at least I could do some things in noisy environments without suffering too much. Since that's the only thing that's helped so far I'm wondering if 10mg/day would help more? I know long term use of steroids will have negative side effects but I'm willing to make that trade if it will help me get back my life. Any thoughts on this?

btw...My dx has gone from Sjogrens to Lupus(SLE) to MCTD. I do not have the dry eyes/mouth that others have.

thanks

[anita]

MAT,

OOPS!!!  I forgot to answer the big question...whether it is present first thing when I wake up.  It IS!!  It is as if it never goes away.  It's the last thing I hear before going to sleep and the first thing I hear when I wake up. 

The only thing that helped was the premium hearing aids tried during the demonstration with audiologist.  But the single hearing aid I use now (due to my different kind of hearing disorder, from stroke damage) doesn't help at all. 

All newer hearing aids offered now have a tinnitus program...basically to provide 'white noise' to help distract from the tinnitus.  Some find it helpful and others don't.  It all depends on the severity of each patient's tinnitus.