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Tumtum1963 Tumtum1963

Tinnitus as new symptom of longstanding neuropathy anyone?

Hi. I'm trying to get to the bottom of what might be causing my relatively new and worsening tinnitus. Mine is a very high frequency whine - never varies but it does ease when I've been asleep. A minute or two so into wakingit returns with a vengeance. Is it significant that it eases when I have been sleeping or is everyone's like this? My GP can find nothing in my ears to explain. I'm a 53 year old post menopausal woman.

I have a neurological presentation of Sjogren's Syndrome that is very like MS. I have sicca (dry eyes), GERD, disequilibrium and small fibre neuropathy with inflammatory arthritis thrown in as a non erosive comorbidity. T

I also have bruxism (jaw clenching) and a very allergic history.

Does this neurological presentation sound familiar to anyone else with tinnitus I wonder? I am under neurology, rheumatology and endocrinology (hypothyroid).

I'm asking because I want to know whether or not to request that my GP refers me to audiology/ ENT now? 

26 Replies

  • eleftherio33095 Tumtum1963

    Have any of your physicians, especially the neurologist, commented on the possible cause of the tinnitus?

    Eleftherios S. Papathanasiou, PhD, FEAN

    Clinical Neurophysiologist

    Fellow of the European Academy of Neurology

    • Tumtum1963 eleftherio33095

      I feel very foolish about this but I forgot to mention it to her when I saw her ten days ago. She was assessing my gait and the extent or progress of the neuropathy and we were discussing my rheumatologist's request of her regarding possible biological agents (Rituximab) and immunosuppressants. She was very much against these drugs as not prevent to help neuropathy or ganglionopathy such as mine -  but wanted me to try Pregabalin. I have tried others from this family and am unwilling to try any more because of severe side effects.

      And the tinnitus it is a sufficiently new symptom to bring into the pressured time frame of an NHS neurology consultation. However I did write to her afterwards and also gave her a symptom list which includes the tinnitus and I ask whether I should see ENT/ audiology for assessment.

      I am very confused and alarmed because both my siblings were born profoundly deaf and my late father had a hearing loss all his life so I have a big family history of deafness. The autoimmunity is mine alone though. 

    • Tumtum1963

      pps the neurologist has referred me for further nerve conduction tests before ruling out possible anti-rheumatic drugs in case the neuropathy is also affecting my large nerve fibres now.

    • clivealive Tumtum1963

      Your Tinnitus and "neurological issues (very like MS)"  and your "gait" symptoms may be the result of a Vitamin B12 deficiency.

      I'm not a medically trained person but I would suggst you ask your doctor to test your serum B12 and Folate levels if for nothing else but to eliminate them as a cause.

    • Tumtum1963 clivealive

      Thanks Clievalive but this was one of the first things my GP thought about testing when my neuropathic symptoms started to worsen significantly four years ago. Since then I've been checked and checked again and take B12 sublingually just to be extra sure. Levels are good. It would be really easy to sort out if that's all that was wrong! 

    • eleftherio33095 Tumtum1963

      The presence together of a family history of hearing loss and your tinnitus may be significant.  In the short time the neurologist has available to examine you, as you mentioned, he or she will probably refer you to ENT for this.  I suspect that you will do an audiogram, and with your family history this will be very useful to do.

      Eleftherios S. Papathanasiou, PhD, FEAN

      Clinical Neurophysiologist

      Fellow of the European Academy of Neurology

  • glenn06752 Tumtum1963

    Hello - I think seeing a ENT is a step in the right direction. 

    I've suffered from miserable tinnitus and now hearing loss for many years. As a matter of fact, I just saw my ENT yesterday and although my hearing loss isn't profound, it's serious enough that hearing aids will definitely improve my high range hearing and possibly dissipate the tinnitus.

    I think all tinnitus is from inner ear damage. The jury is still out on what causes it and what the best treatement is. Does everyone that has hearing loss suffer from tinnitus? Not sure about that but it would certainly make sense if we are hearing a loud hissing, humming, buzzing or ringing, we are missing out on other sounds we would prefer hearing. 

    Meds are another issue. A lot of times meds we ingest for other issues, flare up a tinnitus. Did you take any new prescriptions that set it off? I find alcohol, aspertame, and a quick nap sets my tinnitus off in high gear. We are all wired the same but different  in every aspect. What sets mine off, may not bother yours at all. Neck problems and neurological problems certainly can cause a tinnitus, along with jaw injuries or malfunction, yes.

    I think a visit to your ENT will be very informative. If you find the right one and he's well versed on tinnitus, he or she will be able to help you out. 

    Btw, there's a new study in treating tinnitus and hearing loss that's about midway through study. I believe it started with helping children that lost their hearing from cancer. It's replacement or re-growth of the damaged part or part of the ear that most likely causes the tinnitus. I might not see the cure in my lifetime, but I hope nobody suffers with this major life distraction and annoyance in years to come.

    Good Luck and I hope you find some good news soon.

    • Tumtum1963 glenn06752

      Thanks for your supportive advice Glenn. I live in the north of Scotland but am down in London for a few days soon and was thinking about seeing someone privately while I'm there. This is mainly because I know how long it will take to be seen otherwise!

      It is indeed a horrible symptom - for me it's just the latest one of several unfortunately. The neurologist aid that I must just have continuity now between her and my rheumatologist. We have had to move locations and hospitals a lot over the past year so she is right that too many opinions can spoil the broth! But I've learned the hard way to trust my hunches, having been misdiagnosed and treated aggressively for RA previously.

      Re causes - I do have some confirmed arthritis in my neck but it's not often a source of pain or discomfort so I'm minded to think my tinnitus is due to nerve damage from my immune mediated neuropathy. I also have had a very bad taste for six years now and this is the other symptom that I really hate. I feel that both impact a lot on my quality of life now. I did have a lumbar puncture that confirmed I have a systenic inflammatory process occurring and a lip biopsy that says I have high numbers of lymphocytes. But autoimmune ear diseases are rare so I guess I just need an audiology test to take with me to an ENT specialist and that's what I thought I might try and fast track now - the audiology test.

      If I can sort out the tinnitus i will feel I've had a medium sized lottery win. If I can sort out the bad taste and tinnitus I would feel as if I've won the full jackpot!

    • glenn06752 Tumtum1963

      We  both are in the same kind of dilemma. I have other baggage too, that may or not cause or add to the intensity of my tinnitus. I, too, have arthritis in the neck and a bit of TMJ but I attribute my tinnitus to damage from many factors. As a kid growing up, I had bad absessed ears and I remember my mom taking me to the doctor for injections of penicillin. Then as a teen, I played drums in a rock band for many years. The music was extremely loud. As I got older, I enjoyed landscaping and working outside, thus, I used loud power equipment with no ear protection. As I got even older, one of my German Shepherds used to bark loudly in my ear and I think that helped it along. 

      My ENT guy said yesterday that hearing loss is either caused by circulatory problems or damaging noise. That kind of rang a bell because I stopped exdercising in March of this year and my tinnitus amped up pretty good.

      I can understand totally about feeling like you hit the lottery if you can sort and separate what's going on. Me too! Please keep us posted.

      My wife has always wanted to visit Scotland.. It's so beautiful. Her grandmother was born and raised in Peebles, Scotland.. I hope you enjoy some of your visit.

      Keep in touch,


    • Tumtum1963 glenn06752

      Thanks Glenn. Hmm that's interesting to hear a bit about your history. I've never really been exposed to very high decibels although my three sons were all in rock bands and used to rehearse in our small house regularly. But the dogs and I would hide! My husband's hearing isn't good but he did used to go to our son's gigs often.

      I do have Raynauds with my Sjogrens but I don't think this would account for tinnitus. I'm vigilant about exercise so nor would the arthritis explain.

      The neurological issues(very like MS) still seems the most plausible explanation to me for my tinnitus but according to your ENT this is not one of the causes? Perhaps he meant common causes and arthritis is common but what I have is very rare unfortunately. So I'd need an ENT who understands immunology too. A tall order I suspect! Hey ho onwards and upwards. Good luck to you too and I'll come back and share if I make the lottery win!

      Just started a food supplement called Taurine today to see if this helps as recommended to me on NeuroTalk forums for curing tinnitus. I'll give anything a go frankly!

  • rick20969 Tumtum1963

    Responding to an old post. I have small fiber on and although I have had tinnitus for some years it recently became much louder and persistent. I'm sure it's the neuropathy. Not much in the medical literature about this.

    • jane6280 rick20969

      I'm about 4 1/2 years into a bout with idiopathic, full body, small fiber neuropathy.   Like the original poster,  I'm also experiencing a high-pitched whine.  It seems to be worse in the evening like all my other neuropathy symptoms.  

    • jane6280 mig33038

      No, no antibiotics were involved.

      I have both typical and atypical symptoms.  The typical ones are tingling/vibrations/burning in my feet and legs, tingling in hands and head, and then these really bizarre "whooshing" feelings all over that come again.    They're kind of like what you feel when you get an adrenaline rush.  Sometimes they're in isolated parts of my body like they're hitting a nerve bundle, and sometimes they're just full body waves.

    • jane6280 clivealive

      Thanks, my B12 levels are good.  When I was supplementing before I got into the neuro, lab results showed my levels were too high.  The neuro told me stop the supplements, and my levels remain good.

    • Tumtum1963 jane6280

      This is exactly like me Jane. And I’ve just had full vestibular tests, referred by my ENT who wished to exclude autoimmune ear disease due to vertigo. The tests (awful) showed I have no ear damage to account for my tinnitus or vertigo.

      The audiologist wondered about the arthritis in my neck but to be honest - as my small fibre neuropathy (SFN) affects every part of me and you have pretty much the same combination - I’m voting for SFN as culprit. 

      I should add that i have had arthritis of my jaw excluded and sensory ataxia added to my list. I fail the Romberg test every time.  So the audiologist felt that my vertigo, disequilibrium and tinnitus all belong to the neurological side of my Sjögren’s rather than vestibular damage. 


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