More Tinnitus and question about ENT for Sjogren's

[MAT51]

Sorry - it's my week for asking inane questions!???

I occasionally use a FB page for Sjogren's and other CTDs to glean information and when I asked about tinnitus recently, other SS sufferers told me it can be part of SFN but also commonly occurs because we don't make much ear wax due to lack of moisture. I certainly don't have much ear wax  and the audiologist said one of my ears looks dry and flaky inside.

I had an audiology test last week but my hearing is fine. So I feel I should really have this checked out by an ENT specialist next. But when my GP referred me she just got a letter back from ENT saying I just need a hearing test and some antibiotic cream for my nose bleeds. I have hyperacusis I'm told and still have worsening tinnitus and it's reminding me of when I had SFN and could not get to see a neuro -kept being told it was idiopathic and I'd just have to come to terms with it and take symptomatic drugs. Finally I got my way and neurology has had a big input.

I know most on this forum aren't from Scotland/ UK where I live, but I wonder if most people with SJS have seen an ENT specialist and attend eye doctors for Sjogren's related problems affecting the ears, nose and throat? Is this helpful for you or not? 

Failing getting any ENT input - can anyone tell me if I should be using vitamin E oil or olive oil down my ears to try and moisten the ear canal perhaps? I'm finding this symptom very hard to bear I admit

[Pete0211]

I had an ENT visit a couple of days ago - he seemed pretty up to speed on the symptoms of Sjogren's, and was interested in my experiences with pilocarpine and cevimeline so he could have a better understanding for some of his other patients (I guess he sees it frequently enough). I didn't ask about his recommendations for ear, nose and throat, but I am seeing him in another week for a lip biopsy, so I'll ask him then and will follow up with you.

[MAT51]

Thanks this is very helpful. My lip biopsy was conducted by a young dentist under supervision of an oral consultant at the direction of my rheumy . I didn't know ENT could do this procedure? Good luck!

[anita]

Have you checked all your medications...MANY cause tinnitus.  It may not be common side-effects for a drug, but sometimes you find it listed in uncommon side-effects.  I know Plaquenil has this side-effect (probably where I got it from).  I know you don't take this any more, but other drugs may cause it so wouldn't hurt to look them up for uncommon or even rare side-effects.

I doubt the ENT will be of much help.  There are hearing aids (most) that have tinnitus settings to eliminate it.  I am currently on a 45 day trial of hearing aids (my hearing problems are not from normal hearing loss, but from stroke damage to the auditory system causing problems with processing).  I noticed right away the elimination of my horrible tinnitus when she put both hearing aids in.  Sadly, we went with one hearing aid to start (for my type of problem) and it doesn't help the tinnitus (with just one hearing aid).  I may consider getting the other if not just to get rid of the tinnitus.

[MAT51]

No I've been a bit lazy about checking my meds for possible tinnitus triggers but all I take is Levothyroxine - which I've taken for years and the brands change often but I'll double check. I'll also check the brand of Losartan but I've taken that for over a year now and this only started up about four months ago, unless it was around but I didn't notice it so much then? Hard to know with tinnitus. In the past (in my 30s!) I had Bell's Palsy and something called Myringitus - a blister on the middle ear. The Bells Palsy left me with some disequillbrium that feels very like mine now. This is why I'd like to get the back of my head and ears checked out just to rule out a vestibular cause I suppose? 

[Carolina]

My tinnitus started in the 90's, about 20 years ago.

It is part of my version of Meniere's Disease.  I eventually developed hearing loss (medium) in both ears, then worse in my right ear.  My right ear also has the worst tinnitus. (more than one 'tone' buzzing away at the same time)

One ENT recommended N-Acetyl Cystine in 2007, which I started and still take.   In 2011 the hearing in my right ear improved so the loss is the same as that in my left ear.  The Duke ENT I was seeing told me that this sort of improvement of hearing loss can only occur with Meniere's, so the diagnosis was confirmed by that factor.

I have a feeling of pressure in both ears, but fortunately do NOT have the terrible vertigo which is the most disabling result of Meniere's.

I believe that Meniere's is another form of Immune Disorder, or at least accompanies Immune Disorders frequently.

I have a friend whose Meniere's is so severe the doctor is trying to destroy the nerves in his ears with a large dose of antibiotics.

We live with many very disabling aspects of our Immune Disorders. 

Hugs, Elaine

[MAT51]

Thanks Elaine. From the description and the fact my hearing is normal I think it's probably not Menieres for me but it would be good to have it excluded properly -given that I get vertigo often.

[quietdynamics]

I first really noticed the tinnitus after an area earthquake, which resulted in electric power loss. I heard what I thought was water running through copper pipes so I checked, even outside... it was me! LOL  That was August 2011 (Nov 2011 was when symptom escalated to the point of ER visit and care of Neurologist.)  I did see an ENT once with Otitis media ( even children get that, as with my granddaughter ) 
I have had bouts of " increased sensitivity to certain frequency and volume ranges of sound", even someone coughing will make me grimace as it feels like electric waves going through my brain.. so very unpleasant. Radio is intolerable. This is for me pre "knock down" flare.

I mentioned in your other post that with upping treatment protocol to Methotrexate a number of my symptoms have abated.
(So if the tinnitus is an inflammatory response hoping your new medication may help lessen this for you. We will look forward to your report  )
The tinnitus is still there at a much lower tone/Volume and "white noise" helps.

My skin is dry. During a shower I need to use an exfoliating brush or I simply do not feel clean.
I need to use a Q-tip or my ears bother me.. to remove dry 'whatever'.
On occassion I have used a bit of Genteal eye gel on ears ( not wanting to risk any exposed oils that can go rancid if they ooze into canal) Suppose a heavy viscosity eye drop might help ..  mineral oil? http://www.entnet.org/content/earwax-and-care

It is always possible that the problem could be dry ear wax deep in the canal, which an ENT can remove. Irish gave an account of her experience with this.

[DeadGirl75]

Sorry - it's my week for asking inane questions!???

I occasionally use a FB page for Sjogren's and other CTDs to glean information and when I asked about tinnitus recently, other SS sufferers told me it can be part of SFN but also commonly occurs because we don't make much ear wax due to lack of moisture. I certainly don't have much ear wax  and the audiologist said one of my ears looks dry and flaky inside.

I had an audiology test last week but my hearing is fine. So I feel I should really have this checked out by an ENT specialist next. But when my GP referred me she just got a letter back from ENT saying I just need a hearing test and some antibiotic cream for my nose bleeds. I have hyperacusis I'm told and still have worsening tinnitus and it's reminding me of when I had SFN and could not get to see a neuro -kept being told it was idiopathic and I'd just have to come to terms with it and take symptomatic drugs. Finally I got my way and neurology has had a big input.

I know most on this forum aren't from Scotland/ UK where I live, but I wonder if most people with SJS have seen an ENT specialist and attend eye doctors for Sjogren's related problems affecting the ears, nose and throat? Is this helpful for you or not? 

Failing getting any ENT input - can anyone tell me if I should be using vitamin E oil or olive oil down my ears to try and moisten the ear canal perhaps? I'm finding this symptom very hard to bear I admit

Are your ears itchy on the inside? A few years back, I finally broke down and went to an otolaryngology clinic. My ears itched SO FREAKING bad. (Hindsight says it could have been Sjogren's) However, during that time, he gave me this ointment to apply to my inner ear canal. It helped with the itching and I used it up until a year ago. I moved and now I can't find it.

It's a possibility that the otolaryngologist would be able to help. My ears were flaky on the inside as well.

[Pete0211]

Are your ears itchy on the inside? A few years back, I finally broke down and went to an otolaryngology clinic. My ears itched SO FREAKING bad. (Hindsight says it could have been Sjogren's) However, during that time, he gave me this ointment to apply to my inner ear canal. It helped with the itching and I used it up until a year ago. I moved and now I can't find it.

It's a possibility that the otolaryngologist would be able to help. My ears were flaky on the inside as well.

What was the name of the ointment?

[cccourt1942]

I don't know name of his cream. My ears itch like crazy. My derma gave me a container of cortisone cream: Triamcinolone @ 1.0%.  She says it's dry skin.  Not related to strange itching of sis. Thing is you have to keep washing your auricle and reapplying.  It can feel thick there.  It helps me.  ??

[MAT51]

I don't have itchy ears - at least no itchier than anywhere else - but I've always been an itchy person so kind of used to itching some part of other - scalp usually the worse although no dry skin or dandruff at all. The tinnitus is definitely my most hated symptom alongside the awful sour taste and disequillibrium. I love choral singing but between the hyperacusis (I've been wearing ear plugs at rehearsals!) and the hoarseness and tendinitis in both arms I'm struggling now so i'm probably about to sing in my last concerts ever this Christmas.

I've been trying 1000mg Taurine for tinnitus at someone's suggestion - helps with constipation but not with tinnitus!

[cccourt1942]

Hi there,
      An "audiology" test is a hearing test.  Tinnitus is a phenomenon which comes from the inner ear.  Meniere's is the "common" cause for tinnitus and subsequent dizziness.  I am 74 so do the math to determine when I was in school.     When I was in school, Meniere's was the only cause for the dizziness.  Tinnitus can be idiopathic...and come and go.  When it is chronic, it is more likely associated with Meniere's.
     Back to "when I was in school":  since I joined this forum I learned about AI inner ear disease.  Needless to say autoimmune conditions weren't  taught in the stone age.  There are a number of members who have offered interesting and helpful advice for those of you who could be affected by this condition.   
     In the meantime, with your geographical limitations, it is likely you will be dxed and treated for Meniere's.  In my estimation, you are young.  THEN...I googled it:  Lo and behold: age of onset (from Mayo's) states 20 to 50.  Graph reads most are dxed 40 and up.  I thought I recalled 60 and up.  Again, i'll beg time erases a lot!  None the less, if you have found a supplement which decreases your symptoms and makes you more comfortable, count yourself lucky.  At my age, I am well aware I have early symptoms of Meniere's with the dreaded symptom of "ordinarily in one ear".  I manage the tinnitus with extraneous noise.  Now that I am on 2 to 3 mg per day of prednisone for SjS, my hyperacusis has decreased...as well as my light sensitivity.  I can listen to music, the radio, etc now.  SO relieved.  Was w'out my music for about 10 years.  btw:  re: earplugs-I have needed to wear earplugs in movies at times.   My surviving brother (moderate to severe hearing loss) says I don't sew anymore as the deafening of pins dropping bothers me too much. 

      I worked with deaf ed population for a long time.  I took my senses for granted until that experience.  So to have had my unaffected hearing for this long, I must be grateful. 
      Hope you have a good day...and are enjoying your Christmas season.  Bet it's cold where you are.  Beautiful part of the world.
    c3

[MAT51]

Thanks ccccourt1942. I can see how your calculations have led to Menieres for me and I think you might be right - which is why I'm pushing hard to see an ENT and hopefully rule it in or out.

I too am very familiar with deafness having grown up with two profoundly deaf younger sisters. But the neurologist says my dizziness is disequilibrium due to proprioception issues from small fibre neuropathy. She is so head girl superior when I see her that I failed to even mention the tinnitus to her - which is relatively new and has only come on long after the small fibre neuropathy and disequillibrium.

The reason I think you might be right is because I had a very similar type of dizziness when I was pregnant and then again in my early 30s, long before I had the SFN or joint pain and swelling. The rheum agreed to try and find me an ENT with some knowledge of Sjogren's and autoimmune vestibular disorders if he can.

My disequillibrium vanished within 12 hours of starting 20mcg steroids last year and only returned one lousy day a few months after I'd tapered off them at the next rheum's insistence - after 6 months of no disequillibrium dizziness at all.

New young rheum agreed with me that this suggests something vestibular rather than neurological. The idea of this screaming  tinnitus continuing on forever is dreadful. I'm hoping that the Cellcept I've just started will help if it's all part of the inflammatory process. Supplement Taurine hasn't helped me at all apart from possibly easing the constipation. Re being lucky - both my parents dropped dead at the age of 73 and both sets of grandparents were dead before they were 60 so if I get past 73 as you have, I'll feel I've won the lottery! Although joking, aside I do realise that good fortune is really about quality of life not just longevity   

Yes it's very cold here but so beautiful on a lovely still day like today 

Take care, Mat

[anita]

You really should see an ENT to rule out any inner ear problems.  Make sure to tell them of your profound response to steroids (very important if possible inflammatory process in the inner ear).  Especially since you have the horrible tinnitus, that appears to have come on (and get bad) rather quick.

Don't just check your meds for tinnitus side-effects...supplements too!  I don't know if you take any other supplements other than the Taurine.