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    • #19176
      Ally
      Keymaster

      New research suggests that tinnitus (ringing in the ears) may be an early warning sign for both Parkinson’s disease and Alzheimer’s disease. Click here to listen to a flash briefing we recently produced on this topic.

      Did you experience tinnitus prior to your diagnosis? Did your doctor suspect the two were connected?

    • #19198
      Jo S.
      Participant

      Yes, I experienced tinnitus prior to my diagnosis. I actually had a lot of common prodromal symptoms, but my doctor didn’t suspect any of them were connected, which caused me to go undiagnosed for many, many years.

    • #19213
      Robert
      Participant

      Ah,  the ol Tinnitus question, Ally.

      For those of you who don’t know my writing yet, I sometimes think I can write humorously.  So just read on and bear with me.   I do have spinal stenosis, you know!

      This topic of tinnitus, unlike PD, where they are still a bit shy of looking bored when it discussed,  is when my usually very nice and sympathetic family doesn’t hesitate for a minute to tune me out and look at my like I really am crazy.  Having to believe that I have this PD disease with no test or cure and every case is different is real is one thing,  and I guess they have been convinced it really is a thing I have to deal with.  But believing that I have this mysterious Tinnitus thing is just too much!

      I have had severe tinnitus for as long as I can remember.  I cannot remember not having it.  I am 67 this year, so it has been with me for at least 30 years.

      How loud is it?  When I describe to my movement disorders doctor or my ear, nose and throat doctor how loud it is, and even my audiology doctor, they just look at me like I am crazy.   It is this loud.  My vacuum cleaner does not drown it out!  For those of you, like me,  who have had multiple MRI’s or CT scans, with all the strange and loud bombarding noises — it is louder than any MRI I ever had.   The MRI machine does not drown it out.   I describe it as a rabid choir of cicadas in the middle of my head.  If I put my hands over my ears, it does not affect the sound.  It is obviously not a part of my normal physical or mechanical hearing anatomy.  It is a brain phenomenon.  It is just always present in the middle of my head 60 minutes of every 24 hours of every 7 days of every week.  It is there in my sleep.  Again, I have had no doctor ever react as if they believe me when I describe it to them.  Not a one.  By the way, I also have severe hearing loss in both ears and wear powerful hearing aids.  I cannot hear an ambulance or fire engine siren while I am driving my car without my hearing aids.  I cannot hear the phone ring without my hearing aids.   I have lost all of my high frequencies.  I do office work now.  In another life I actually made a living as a musician playing orchestral French Horn and also occasionally Double Bass.  And then the electric bass in other groups, which was obviously a bit louder and tougher on the auditory system than the unamplified instruments.  I probably did damage my ear anatomy from that.  But this Tinnitus From He _ _ came to me years later, after I started my professional life providing financial services to people.  I have always wondered if my brain was trying to replace the missing high frequencies and got so confused doing it that it left me with this sad result of it’s failed experiments.

      So, I guess the answer is yes, I definitely had tinnitus before my PD diagnosis two years ago.

      For those who are wondering, the cicada choir is just Altos.  There are no Sopranos, Tenors, or Basses.  So it is kind of boring too.  I am so used to it that I am able focus and concentrate and not have it interfere with my activities.  Most of the time!  Sort of like PD when the meds are working.  There are times when it overwhelms and you have to figure a way to cope.   I think there are some times when my Tinnitus causes me to forget that I have this PD thing!  Another condition for the famous hot bath therapy treatment, don’t you think?

      How did I do in describing it?

      PS.  I spent my high school years in Southern Illinois, way down there by Cairo and Kentucky, where they speak a very interesting version of English.

      They (and I)  would pronounce this medical term as   “ten EYE’  dus”.  More of as an industrial strength word.  Up North, where I now live, I hear most folks pronounce it as “TIN’ ah tis”.   Which I consider a very modest, kind of passive, off hand kind of word.

      If you had what I have,  you would laugh when you hear the word pronounced as “TIN’ ah tis”.  That is a weak word to me and certainly is spoken by someone who has no concept of this thing called tinnitus!

      Hey, that’s sort of like PD, isn’t it.  If you don’t have it, you don’t really have the slightest clue of what it is like to have it.

      So, I am a member of the PD club and the “real” Tinnitus club too!

      But, I am only 67, so by now I would not be surprised at all to find myself being kidnapped into, I mean invited, to join some other notoriously exclusive “clubs” during my journey through the rest of my life.

      With PD, we all learn quickly that our individual journey is always a gong to be a bit surprising and to not be too surprised at the surprisingly surprising things that reveal themselves each and every day.

      You now know where the Alto cicadas are for the other 12 years you normal folks aren’t hearing them singing in the trees.  (I know , I know, there are 13 year cicadas in just parts of the world.  Other places have annual cicadas.  In Northern Illinois we have 13  year cicadas.).  And yes, I have several times had my tinnitus when I have experienced the real cicadas in the tress.  It is quite something let me tell you.

      Thanks,

      Robert C.

       

       

    • #19218
      Rick M
      Participant

      Yes, I was experiencing tinnitus before being diagnosed with PD.

      Lost my sense of smell first.  Ears started feeling plugged and then after several years the ringing started.

      Was diagnosed with Meniere’s disease at one point.  Then was diagnosed with hearing loss which they said caused the tinnitus.

      Was diagnosed with Parkinson’s several years later because of trembling and walking issues.  No one has ever associated the tinnitus or hearing problems to Parkinson’s.

      Note that I also have chronic B12 deficiency and chronic neutropenia which they think is caused by an autoimmune disorder and they say is not related to my PD.

    • #19219
      Jacque Walston
      Participant

      Yes, since childhood. Always this tone singing in my head. Many suggestions as to how it happened, but no cure, no treatments. I tried hearing aids that supposedly counterbalanced the tone, but that did not work.

      I had other problems that were supposedly hints/precursors of PD.; irregular bowels, constipation. but no one ever took it as a sign for something else wrong. I believe, at that time, doctors were not looking at the whole person, just treating the symptom that was their specialty.

      Robert C, I appreciate your description of tin-EYE-tus, a mean condition that won’t stop, ever. It just gets worse sometimes.

    • #19242
      twok
      Participant

      I had tinnitus in one ear, now my PK side, for about 4 or 5 years.

    • #19256
      Robert
      Participant

      Thanks Jacque,

      I appreciate knowing there are others out there who know what I am talking about with this tinnitus thing and this PD thing.

      Robert C.

    • #19282
      Don Weber
      Participant

      I have tinnitus in both ears. The sound goes up and down and at times goes away,only too return.When it returns it usually brings a migraine along. The Neurologist put me on Propranolol 3 times a day stopping real bad migraines and reduced the lighter ones. My Pain Doctor  told me he was certain I had PD,in 2018. I had the Pain Doctor’s certain  confirmed by 2 different Neurologist in 2019. I had tinnitus about 35+ years and i’m 77 years old. Don W.

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