Sorry - it's my week for asking inane questions!??? :o
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
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.
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!
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.
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?
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
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.
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.
Quote from: MAT51 on December 03, 2016, 04:04:46 PM
Sorry - it's my week for asking inane questions!??? :o
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.
Quote from: DeadGirl75 on December 04, 2016, 12:08:08 PM
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?
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. ????????
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!
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
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
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.
Thanks Annita. I'm really starting to panic a bit about the tinnitus I admit -it's so loud and constant. It does ease when I sleep and only returns a few minutes after I wake so that's the only relief. The disequillbrium is worsening too and I find it hard to get up and down from chairs without losing my balance. I told the rheumy and he paid close heed to the fact that the disequillbrium disappeared notably fast with steroids last year and only returned once I was off them.
Supplements are only B12 and AdCalD3 as well as the Taurine. Maybe I should drop the Methyl B12 as my levels were fine when last tested - approximately 720. I've been taking it for ages though and the tinnitus only started up four months ago.
I was wondering about some kind of vasculitis such as Cogan's as this seems more likely than Menieres - which I believe is usually more episodic than mine. He asked me a lot about my responses to various drugs such as Methotrexate too but of course the tinnitus is relatively new. I started Mycophenolate yesterday at the lowest dose. Been feeling nauseous off and on which isn't boding well but hoping it will ease off as I acclimatise.
I have been overdoing things in the early run up to Christmas as I'm choral singing again and have to wear ear plugs for the hyperacusis while rehearsing. I'm determined to see it through to the coming weekend's concert, as we move away permenantly in April and I know that the SJS is becoming too forceful for me to start singing again with a new choir. I struggle to hold up my score because of tendinitis. I use eye drops all the time and suck my salivex pastels and sip water every few minutes - must appear nuts to those around me!
But there again it's great for my brain to be reading music and I've been less hoarse and my breathing has been more regular since returning to singing so maybe it's good exercise and stimulates the vagus nerve in some way? But the dizziness is really hard going especially when I have to look behind me to see where I'm sitting and then feel I'm falling. This has to be more than a proprioception thing does it not?
This is proprioceptive disorder. I have had it for 20 years and our brain loses the ability to identify where we are in relation to our surroundings. I also have the tinnitus in both ears plus totally deaf in right ear and 1/2 deaf in the left ear.
Steroids are the only thing that help the balance issues but don't cure it. My doc did blood work and found that I have 2 antibodies that can destroy my hearing. I was on 5 months of steroid pulse therapy that is 1000 mgm of solumedrol once a month IV for over one hour. I am supposed to do it again for 6 months but having other problems that prevent me from doing it at this time.
You have your hearing so there might be help from the cellcept. There used to be hearing aides that one could wear that made white noise which helped the brain sort of tone down the tinnitus. Kenny Rogers wore these for some time. I don't know what happened to that situation for him lately. Ask your doctor about this ---probably your ENT could help on this also.
My tinnitus got so bad that I had a surgery where they removed my mastoid bones and all the hearing apparatus in my deaf ear. They then went in and destroyed the hearing nerve with a diamond tipped drill. It was a 3 hour surgery and I had no balance hardly at all afterwards. This procedure was done to tone down the tinnitus. I helped but I still have it and find that fatigue really kicks up the tinnitus.
So, this is almost funny, I still have proprioceptive disorder, I have only 1/2 of my balance plus I have the problem with the calcium sediment in my ear that causes the balance issues. On any given day I am staggering from one of these. I have to watch those curbs and watch the ground when I walk cause those falls will knock me silly and I am 73 now and high risk for fracture. Yikes. Ain't life fun. Irish
Yikes Irish - I'm 53 (a month off 54 mind!) and both my parents dropped dead from sudden cardiac arrest - both at 73. Please tell me that I haven't got 20 more years of worsening tinnitus and vestibular/proprioception issues to look forward to before following a family tradition?!
Thinking of begging for steroids again to tide me over until the MMF kicks in perhaps. Have IM shots helped the same way as oral steroids for you? Oral steroids give me awful gastritis and im already feeling icky from the MMF/ Cellcept.
Proprioception IS the vestibular apparatus. All balance comes from there. Beings that walk, crawl, etc learn to balance and develop as we grow. Think of the one year old learning to walk. The difference is in early years, we are adjusting/learning our physical abilities. As we are losing them, we are basically going backwards. One of the more popular exercise programs for "aging" population is a balancing class. It helps one learn to move our legs to adjust if we feel we are falling, use our arms to help "balance", right down to leaning how to sit properly. I attended one class...but they were when I was ordinarily working. Couldn't get to them regularly...lost interest. Reading this thread reminded me of them..and am going to investigate them in the area where I live now...and now that I am truly retired! One of the impairments we suffer in aging is that of mental quickness: that is, judging a situation and what to do. A second delay can result in a bad fall.
c3
Glad this thread has reminded you of the importance of balance related exercises. I have to work to earn money and am moving about still from an island to the the other end of the Scottish mainland so just haven't time to enrol in classes. When I did this for a while (tai chi and yoga) it helped but I was the youngest there by far and the most incapacitated too so once again I really don't feel my disequillibrium issues are age related - especially as I had episodes of these when I was in my 20s and 30s.
None of my friends, most same age or considerably older than me, need to walk with a cane or topple over if they turn their head to the side or feel they are falling into a chasm if they look up the way I do. It makes me miserable to think that this relates to the ageing process or that I somehow don't try hard enough to keep fit and well?
I really do and as I've said, both my younger sisters were born profoundly deaf and my dad always had balance/ proprioception issues which neither resolved or worsened as he got older. In his case I think it was because he had a rare type of hereditary diabetes and also severe gout and hypertension even as a young man. Both my parents had vascular dementia by the age of 70 and I'm therefore trying hard to get on top of my autoimmune problems to avoid going the same way if I can. :)
When I had my ear surgery I had to go to vestibular rehab at Sister Kinney for a while and it was very good. It is such easy exercises and they do teach you how to move and exercises that will strengthen your legs, etc. If you move slowly and learn to do things a little differently you lessen your chance for injury. The best thing you can do for yourself is to keep your legs and core strength strong.
My balance issues don't control my life but they do impact it. There are things I won't do or can't do because I would put myself in danger because of my untrustworthy balance. Turning ones head normally will set off the balance issues so have to learn to turn the whole body instead of just the head. Or turn the head very slowly. REmember that it does hinge a lot on the placement of or body in relationship to our surroundings.
Stepping off curbs and crossing streets are one of the dangerous tasks. Inability to judge distance is involved here and if you add in the deafness it becomes really dangerous. This task involves stepping off the curb and having to look down to know where your feet are and also looking left and right many times to make sure where the cars are and how fast they are coming. There are several things involved in this task that make it tricky. Add in the noise, wind, sun, etc and it gets more involved.
One thing that I am thrilled about is that after about 2 years of recovery it became much easier for me to drive and my brain learned how to cope. I now drive in big cities and am amazed that I get along so well. After my surgery I had to read a book when I rode in a car as I could not look at the road and scenery coming at me without getting very dizzy. Now it doesn't bother me. My neurologist explained this to me and I don't remember the reason. However, after driving or riding for very long distances I will get out of the car and even though I have stopped moving forward my brain still is trying to deal with forward motion. Very weird. I advise vestibular rehab to anyone with these balance issues. Good luck. Irish
Thanks Irish. I'm not sure that there's anything as sophisticated as vestibular rehab where I live but I'll look out. I'm guessing that a lot of it comes about automatically as we acclimatise to our new state of being? But then as new symptoms such as tinnitus kick in and worsen I'm still being caught out. I tell myself it's fun like being a bit drunk all the time (in fact some local daytime drunks have been saluting me as I high step past their bar!) but finding it hard to find anything remotely positive about the screaming, whining tinnitus I must say. Hey ho ??? :o
MAT & Irish,
They still make hearing aids for tinnitus. They are pretty much a standard feature on hearing aids now...providing the white noise to reduce the tinnitus. I found it very helpful when trying the hearing aids on both sides, but we are doing a trial of just using one side and it doesn't help at all now. My hearing problems aren't from hearing LOSS, it's from lack of 'processing' due to stroke damage affecting the auditory system (the MRI showed the stroke damage in this area). I may get the second hearing aid just for the tinnitus relief. If your tinnitus is that bad, you might want to consider the hearing aids too.
MAT, sudden tinnitus of that degree is NOT normal (it is typically a gradual onset over time). You must see an ENT for a full work-up!! Don't dismiss this as Sjogren's/neuro related without proper testing. It may be related, but it may also be an inner ear problem that needs immediate attention. I can't believe they haven't sent you to an ENT. Don't you have the private pay benefit (that they give you money to use for private visits)?
I have profound proprioception loss and know how bothersome it can be. I broke my ankle last year just from looking up (instead of at my feet) and misplaced my foot and fell. Actually, all my falls (and I have had MANY) are related to not looking at my feet to place them properly. You have to pay close attention to your body and position when you have proprioceptive problems. Take you time when walking, sitting, etc.
Hi Annita. To answer how the NHS works in relation to referrals is - well it often doesn't work well at all! No we don't have a private voucher scheme. The GP refers a patient to a specialist or specialism. One of the specialists (usually known as consultants) glances through referrals and decides who might see this person according to information provided by the GP.
All this is famously free "at the point of delivery" across the U.K - but each area has its own NHS board (Scotland) or health health trust (England)and so it's rare to get referred to any service beyond your area, unless there is no specialist in that region who can deal with patients with a specific disorder or symptom.
The pressure is on the NHS to keep waiting lists down as much as possible and there are fines if waiting lists are too long and a patient isn't seen within a certain time frame -usually 16 weeks. But inevitably health authorities or boards have specialisms that are so understaffed and underresourced that they just have to accommodate these fines.
In my case the new GP in the area where I will soon be living permenantly - referred me to ENT with info that I had tinnitus (could have been rapid onset but could have been that I was able to ignore it previously or it was subtle and intermitent?). She also said I had nosebleeds,hoarseness and Sjogrens and a family history of profound deafness.
The ENT looked at the referral and passed it on to a different hospital under the same health board, which has an audiology service. They wrote back to my GP saying she should prescribe an antibiotic cream for nasal sores and bleeds and that was supposed to be the end of their input. But the audiologist agreed to refer me back to ENT and wrote the referral with me there guiding him on spelling of Sjogrens, neurology, rheumatology and SFN - and disequilibrium, which he asked me to qualify as something he was much more familiar with of course!
And off it went electronically - although we noticed the postal address and named GP were wrong by about a year, but he couldn't amend this himself so he just added my actual address as a postscript! I will chase it up later today but this will take hours of hanging on to my phone and being subjected to queues and messages, which upsets my hyperacusis no end! And I only got this audiology appointment as a one stop shop on whether I need hearing aids -none offered as my hearing was within normal range. And I had to get my new GP to expedite my referral by marking it as urgent -so I could get a last minute cancellation while in the area for a week - and it was over an hours drive away each way from the large hospital where I had nerve conduction studies and endocrinology appointments on same day!
Hope this explains and sorry it's so long but I thought it might be helpful, on an international site such as this, to clarify our system here in the U.K as it is so strikingly different to yours, even after Obama-care.
There are always private options, but in Scotland these are far less prevalent and very expensive unless a person has private health insurance - which most citizens don't in the U.K. I did look into seeing an ENT privately while visiting family in London recently. But, with all the tests etc, it would have cost me upwards of £500 (not sure how this translates into dollars -but it's a lot of money for one consultation, no matter how brilliant and reknowned the doctor was!). Usually if you're a complex case, it's better to remain within the NHS because the doctors are the same or better (most do private and NHS or just NHS) and notes and records join up on the hospital system where private letters are often disregarded by NHS consultants/ specialists. Whew - nuts eh?! Mat x
Ps and the only time that my tinnitus eases now is when I fall asleep or wake up from sleep. The tinnitus takes longer to wake up than my brain so I get about ten blissful minutes usually before it kicks in again. Any thoughts on whether this is significant?
Interesting...I will try to remember in the morning to check to see whether I too have a delayed start to the tinnitus. I honestly have never paid much attention...as it seems it's always there. I will let you know...if I can remember to check in the morning (my memory is horrible!!).
I have a friend (that I met on this board many years ago) that lives in the UK and has used private pay for several appointments/specialists because the wait time was so long. I remember her saying it was expensive, but waiting for months for appts made it worth while. This is why I asked. She lives near London, so maybe the cost was different.
Thanks for the detailed info on how it works.
Remember remember remember to listen Annita! ... but then you find that as soon as you remember you become aware of it crescendo-ing into your head so that will sort of defeat the point of remembering?! I think you have to remember with some hindsight rather than foresight.
Re your friend -well yes London is a world away in terms of private v NHS but i have a friend in Scotland who sees a rheum privately too. He does NHS work but has a few private patients including her. If she wasn't entirely seronegative then her Sjogrens might be acknowledged by the Scottish medical profession and he would have then suggested that she move onto his NHS list. As things stand he seems to hedge rather a lot because Scotland adheres very strictly to the EULAR criteria for connective tissue diseases and she has to take steroids for Addison's so her bloods are always negative despite her having many sjogrens related problems such as AI biliary disease and pancreatic disease and optic neuromas to name but a few. I'd not trust someone as much if they were working privately and I was paying them to treat me although it can expedite things for some people which is good. For others it just leaves them with a whole lot more questions than answers or joined up care.
I phoned the ENT clinic yesterday to ask about my audiology referral and they couldn't find it. They said they would chase it up abs they did. I got a phone call from audiology later saying that the ENT consultant had revisited my paperwork and told the nurse that he didn't need to see me as I have no hearing loss and am already under a neurologist so asked he to just arrange tinnitus counselling for me. I admit I lost it a little and said that I would like to be seen by him or a colleague to rule out Cogans or other AI vestibular disease because I've actually had this building up on and off for decades and the tinnitus is just the latest manifestation.
I made the pint that I have symptoms affecting my EARS, NOSE and THROAT so if he doesn't feel I warrant seeing then who exactly does he see? She seemed to take my point agd agree so is fitting me in for tinnitus counselling when I'm next down on mid January. Apparently the tinnitus counselling can fast track me for ENT input if they think there's something that's causing the tinnitus, which can't be addressed by counselling alone. Hmmm??! Maybe by then I'll be feeling like a new woman as the MMF/ Cellcept kicks in? I do hope so but not holding my breath!
Take care, Mat
What the heck is the ENT for? I just saw mine this afternoon. She is up to date on SJS. I was there as a follow up. I wanted to tell you that she checked my nose first because she knew I had sinus infections before. No sinus infection or inflammation now. However, she did see a lot of dryness and that is what is causing my nose to bleed. It doesn't drip blood, it just comes out with the dried mucus. Also, I have been having problems with my ears being internally itchy. She checked and saw that my ear wax was dried up along with my ears being dry. She had to pry the wax out, but got it. She suggested mineral oil. She said it would moisten my ears and then the wax would not get so hard.
So here was her suggestions for me. Mineral oil for my ears. Then AYR nasal spray during the day to keep my mucus moist and stop nose bleeds. She also suggested AYR gel to put in my nose at night so it stays moist.
I hear just fine. No hearing test needed.
Yes this is what an ENT is for I quite agree - as well as excluding additional conditions and autoimmune ear diseases. Thanks for confirming!
Quote from: Pete0211 on December 04, 2016, 02:38:32 PM
Quote from: DeadGirl75 on December 04, 2016, 12:08:08 PM
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?
The tube was yellow and white and it was an ointment. I just googled and it was Betamethasone ointment.
Thanks, Deadgirl75 :)
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
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
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
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
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.