Tinnitus Anyone?

neal
  • By neal
  • Posted November 18, 2008 at 3:46 pm · 12 replies
  • In Symptoms
0 Recommendations

I've been blessed with the ever-present tinnitus.
Has anyone else been through a couple of months of tinnitus and have it disappear?

I can't describe it as debilitating. It's between mildly annoying to medium-ly annoying. It's worse at night and when I'm tired.

So - - - The big Sarc question. Is this symptomatic of neuro-sarc and/or has anyone had Sarc related problems with their ears?

I also have osteosclerotic lesions on my skull which are being chalked up to Sarc.

Any similar experiences with the bone lesions and Tinnitus?

Thanks a bunch,
Neal

12 replies

trek50

I get tinnitus from tegretol. When I stopped taking the medication it went away.

smcleo

I have had tinnitus since MAY 2007.

I lost a lot of hearing in my left ear at this time. I was not diagnosed with Neuro sarc until December 2007 when admitted to hospital

I lost hearing completley feb 2008. Admitted to hospital yet again - huge doses of Prednisone. Hearing in right ear comes back but left still bad.

Another flare up July08 lose hearing in right ear completely. left ear still profound hearing loss but better then the right.

I know have a hearing aide in my left ear and my right ear is completely deaf. I have had to sell my business and basically my whole life has been turned upside down.

The ent surgeons are proposing a cochlear implant for my right ear, even though likelihood is my cochlear nerve is trashed (you are suposed to have a functioning cochlear nerve to have an implant).

They have had anecdotal success with some patients with trashed cochlear nerve who have had some boost of hearing post cochlear implant.

I am having a procedure done next week to gather info about my cochlear nerves. NO matter what the result says the ENT team want to put a cochlear in me. They claim they have searched the Cochlear data base and no patient has had a cochlaer as a result of Neuro-sarcoidosis. I dont know how true that is. If any one has one let me know.

Other issues is once i have a cochlaer I can never have an MRI again.

I have not decided whether to have the implant or not. I will make decision early next year.

But with regards to Tinnitus. I have it 24hrs a day 7 days a week. Sometimes annoying but good if i can forget about it.

I only have Neuro sarcoid and no sarcoid anywhere else apparently. They took me off methotrexate today so I remain on Prednisone (30mg a day). That is the lowest dose of prednisone I have been on. I am off methotrexate as it has played havoc with my kidneys. So where to from here with medication- I dont know.

Anyway good luck with your tinnitus

gonenatural

Hi Neal,

Yep, had it for yrs. I have triggers like the hum of the desktop. It can drive me bonkers but for the most part I seldom notice anymore. Of course when I went for my hearing test my ears where not humming but my hearing is fine. No one knows why I have it. I forget how long I've had it. Seems like forever.

Take care,
Gone Natural

gypsyise

Hi Neal
I have had it for a few years. It started in 2004 along with something like vertigo and my head went numb
it gradually faded away. When i saw the ENT they tested my hearing and said from neurosarc i have nerve damage in both ears giving me a slight hearing loss. The tinnitus comes and goes and sometimes i can feel it coming on. it seems to make me really sensitive to high pitched sounds. I have given up on the doctors being able to do anything for it. I dont want a hearing aid but my hearing is not getting any better.
take care
peace love & happiness
julie

unique64

I wouldn't know what to do if my ears quit ringing. I think I would feel like something was wrong. They ring all the time 24/7

theGardener

While it is certainly possible for Sarc nerve wonkiness to set off a plague of Tinnitus until the affected nerves calm-down, thre are other more common sources to consider: Aspirin or other NSAIDS can be a source of "ear ringing" especially if you use them frequently. Hormonal issues can also set the ol ears off. Actully the list is quite long... see here:

http://en.wikipedia.org/wiki/Tinnitus#Causes_of_subjective_tinnitus

micheleb

My ears ring all the time as well, have now for at least a couple of years. Its always present but sometimes its much worse. As someone else mentioned, I wouldn't know what to do without it!

I do not believe I have any hearing loss. In fact, I seem to actually be very sensitive to any noise. I am always turning the tv down, asking people to talk softer and generally try to avoid all loud situations. I have never been around a lot of high volume noise, went to a couple of concerts when I was younger but that's about it. I've never been one to CRANK the stereo up or anything like that.

I have also never seen an ENT specialist. I see my sarc doc next month and this is on the list of things to ask about.

neal

Thanks for all the replies. The Wiki definition provided by The Gardener has numerous causes of Tinnitus and is a good resource for this annoyance.

I sort of feel better now that I'm associated with Beethoven and Van Gough. I think I'll tap my creative side.

Have a great day.

Neal

roxisummer

Does anyone know anything more about tinnitus/dizziness caused by NSAIDs? I've been having thsese symptoms off and on for the past 9 months. My doctor didn't think it was sarc related, and I don't think he thought it was too serious. I recently read about the NSAID connection and cut out my advil habit, but I don't know how long I should wait to see if that helps.

theGardener

While NSAIDs are a good choice in simple pain/inflammation management, habitual use does have side effects; some of them severe.

Check with your doctor about your ADVIL habit, they will suggest a proper dosage with all things considered.

—TeeGee

absbel

I have tinnitus, but so does my mother so don't know if it's related. I've gotten used to it. White noise.

What do the lesions on your skull look like? I have growths in my mouth...

neal

absbel,
I have a sclerotic lesion on my right hip which basically is a circular void of the interior bone mass. It is completely defined with a border or a margin. My skull lesions are osteosclerotic lesions which are the same things but without a closed margin or border. They are open ended.

The RA Doc said it could be Sarc related or just due to how me bones have grown or something else.

He's a good dude but it was an educated non-answer.

I'm not sure how to proceed or if it is something to worry about. They didn't seem too concerned.

Neal

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