Severe Multi Tone Tinnitus — Looking for Support and Curious!

Discussion in 'Support' started by historicalagency, May 29, 2018.


How many tones do you have?

  1. 1

  2. 2-4

  3. 5-10

  4. Too many to count

  5. Varies with situation/environment/stress/day

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    1. historicalagency

      historicalagency Member

      Tinnitus Since:
      Cause of Tinnitus:
      Hi all. I guess I am looking for some support -- I have, I suppose, severe tinnitus with multiple tones -- like, 15-20 at any given time. The two "main" tones are that super common HIGH pitched electrical noise that fluctuates like eEEeeeEe in my left ear, and a pure tone of about 900hz in my right ear. Then, there are various hissing noises that are quieter and more centralized, a morse code type noise in my left, crickets in my right, another high pitched ringing probably more around 5000hz in my right, sometimes a low electrical generator hum, honestly the list goes on and it's not worth even describing them but I hope you get the idea :p

      My question is, does anyone else have this insane combination of noises ALL the time?! I mean, I'm doing some work based on Julian Cowan Hill's methods, and I do notice that sometimes some of the noises are there and sometimes they aren't, which, for the past 2 years, I'd just assumed they were always there. So that's something. But I'm just wondering also how extreme my case really is -- is it actually quite common to have multiple competing noises? When I only had one sound, it was easy enough to mask and to habituate to. I actually had habituated to being able to sleep in silence after about a year!! I was doing... very well, actually, better than I had been before my tinnitus I'd say, and then a period of stress GIFTED me this symphony in my head :p I actually spent the last two weeks of April in the psych ward because of it :(

      I am also curious about the cause of other people's severe/multi-tone T. I have no hearing loss (I've been to multiple audiologists), and have what seems like very *mild* TMJ disorder, but from what the doctor said nothing that would cause the amount of T that I have. For me, however, my initial T came on about two days before I was officially diagnosed with PTSD -- onset with psychogenic "seizure" type things, trip to the ER, and then the dx of PTSD so before my T started I was probably the most stressed out I have ever been in my life. Since then, my recovery from PTSD has been rocky and inaccessible because I was in a situation without adequate health insurance and without stable housing and when my T spiked after I had habituated, it was in another period of extreme stress...

      I am wondering if people with insanely severe multi-tonal T have a similar pattern of stress response? I know my body is already on fight or flight mode all the time, and the evidence literally supports that my T is very much stress induced or related to tension/stress buildup in the body/adrenal fatigue/etc... I also have "benign fasciculation syndrome" AKA my muscles twitch out of control, some lasting for months on end (my right knee has been twitching for over 4 months straight now:)) BUT I still can't accept that my health problems are based in psychological roots, even though I know if I did accept it I might find relief?!?! I don't know :(

      Thank you for reading this long story if you did... if you have any similar experiences, any successes by people with multi-tone severe tinnitus I would love to read the threads or your stories -- or if multi-tone is more common than I thought please correct me so I feel less alone! Haha
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    2. VictorDedalus

      VictorDedalus Member

      Tinnitus Since:
      Cause of Tinnitus:
      I'm interested to read that you are suffering from involuntary twitches. First of all, my tinnitus started in June of 2017, 7 months after a successful craniotomy to remove a benign brain tumor. The onset was spontaneous and overwhelming - a screaming loud unilateral tone ~ 12k in my left ear, same side as my tumor. I assumed the T was a delayed consequence of surgery, but I have also experienced debilitating amounts of stress in recent years. A devastating divorce and then a brain tumor were just two sources of anxiety and despair. I've not ruled out stress as a significant factor in my developing T.

      But back to the twitches. In February of this year I noticed the gradual onset of twitches in my right index and middle fingers. After a few weeks the twitching expanded to my right foot, which has not abated since. Googling "twitching" leads to many horrible diseases, ALS being the most ominous. I've seen several neurologists and actually am undergoing an EMG test tomorrow morning to determine whether there is any evidence of nerve damage that might suggest ALS. The other possibility is unusual brain activity around the surgical site. I have an EGG on Thursday to test for evidence of seizures.

      My neuro didn't think it was BFS, but my symptoms sure appear consistent with it. Perhaps it all leads back to stress, though. I hope to have more answers in the next few weeks. Keep us informed of your progress.

      Oh, and I think I've got about 4 tones going at any given time. Nothing masks my tinnitus.
    3. Nicola8478

      Nicola8478 Member

      Tinnitus Since:
      Cause of Tinnitus:
      I have a LOUD high pitched dentist drill sound plus something that sounds like church bells and also some kind of tune playing. I know that sounds mad. The drill is the worst cus I have hyperacusis and it reacts to sound so sometimes it’s out of control that one. Truly horrible

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