Is Anyone Else's Tinnitus as Somatic as Mine?

Discussion in 'Support' started by SteveSkis92, Aug 14, 2015.

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    1. SteveSkis92
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      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Hey guys, been kind of avoiding this forum as much as possible lately, but stress and T are getting to me again lately. I just moved to a new city, so the move, the new job search, and getting settled in a new place has definitely got me a little antsy, especially when I look at my bank account......yikes.

      I am here with a question though, but I should preface it with a brief intro. I have had T for about 17 months now. For the first 9 months I could only hear it when meditating or laying down to bed, but in early January it became more intrusive and I also developed mild H. I attribute my T to the use of Electronic Cigarettes. Propylene Glycol, the main ingredient in E-Cig juices is a known ototoxic substance. However, I had two standard audiograms done in two separate locations, both of which came back perfectly. I can also hear tones up to roughly 17.5kHz. Slightly less in my left ear, which is surprising because my right ear is typically the more problematic of the two. My T also raises and falls in volume in synch with my heartbeat/every other heartbeat about 50% of the time, maybe more. Other members on TT have shared information regarding Somatosensory Pulsatile Tinnitus with me that makes me question whether true ototoxicity has occurred,
      or if I am experiencing a neuromuscular conflict of some sort. Propylene Glycol is known to cause inflammation, so this added on top of years of poor posture, mild scoliosis, and repetitive motion at work could have, in my mind, been the straw that broke the camels back.

      SO, here's comes the question..... My T is very VERY easily somatically influenced. I can change the pitch and volume of my T through the typical movements like turning my head, clenching my jaw, etc. But I can also change my T by doing things like bending/moving my fingers, opening and closing my hand, (not clenching, just opening and closing,) I can change it by moving my eyes, moving my tongue, flexing my calves, moving my toes, clenching my toes, etc. So far, I have yet to find anyone else whose T is as easily somatically changed as my own. The only things that seem to spike my T are dehydration, stress, and anxiety. I have stupidly been exposed to a couple very loud environments since I got T, none of which caused a permanent or even temporary spike. Food, salt, alcohol, and tobacco all have no impact on my T.

      Does anyone else experience somatic T like this? I can pretty much double the volume of my T by clenching my jaw, but doing things like moving my toes, fingers, tongue, etc. increases the volume by roughly 25%.

      My thinking is that this may be a good indication that my T is of a neuromuscular origin, not cochlear. Does anyone agree/disagree with this thinking? Do I sound crazy saying that?

      Any responses are greatly appreciated. Hoping for a quieter tomorrow for us all!

      - Steve
       
    2. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      @SteveSkis92

      I can increase my tinnitus 300% by jaw clenching, face muscle tensing. If I turn my head to the right or left it goes up a bit too. I used to be able to reduce my unilateral noise by pressing below the ear. It has no effect if I do it now.

      What all this means.....no idea. Interplay between muscles and neuronal hyperactivity in the brain maybe.

      Somatically influenced tinnitus is very common. It is just another unexplained peculiarity of the condition.
       
    3. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Thanks for the response @Mark662

      Does your T change at all with your heartbeat? I mean does it seem to "pulse" in sync with your heartbeat? I don't mean hearing a whooshing or drum beat, but just a slight rise in volume with your heartbeat. Just one of many things I've found with my T that lines up with neuromuscular based T. I do have times when my T is constant, but I also definitely have times where it goes in sync with my heart beat.

      Sorry, this was pretty poorly described. Way too little sleep last night....
       
    4. Mark662
      Transparent

      Mark662 Member Benefactor

      Location:
      United Kingdom
      Tinnitus Since:
      1/1988
      @SteveSkis92

      I cannot say that my heartbeat or eye movements influence the level of tinnitus. After I have exercised, my tinnitus level goes up for a while afterwards.

      Laying on the floor stretching changes the level of it.

      When I eat something the level goes up and down as my mouth opens and closes.

      Many years ago, I put this to a leading tinnitus/hyperacusis specialist asking him why it happens. His response was "because I was listening for it to happen". Basically, he didn't know. No one does for sure. Just as no one definitively knows what causes tinnitus or how to go about curing it.

      It is of no real consequence. It won't make a cure possible by finding out what is causing it.

      I put it down to a hyper awareness, over sensitivity to body noises, anxiety and stress, depression......

      Try a session in a sauna and see if it helps. If it is neuromuscular it might improve.
       
      • Like Like x 1
    5. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Thanks for the info @Mark662 , greatly appreciated again.

      Does anyone else have an opinion on this? I can change my T by moving my toes, feet, legs, arms, fingers, eyes, lips, etc.....Would love to find someone else who experiences this!

      -Steve
       
    6. Mad maggot
      Breezy

      Mad maggot Member

      Location:
      New zealand
      Tinnitus Since:
      12/2008
      Cause of Tinnitus:
      Unknown
      I do not have somatic T but you say clenching your fingers can make it louder. Perhaps this is more due to blood vessels? Since you say your T reacts with your heart beat and because when you clench your hands it builds pressure - that's why when you go for a blood test you clench your fist to make it easier to find a vein. Also some types of T can be from blood vessels putting pressure on the eighth cranial nerve also called the vestibular nerve and it runs thru your ear and face. Do you have any spasms in your cheek or strange sensations?
       
      • Like Like x 1
    7. Crake

      Crake Member

      Tinnitus Since:
      04/2015
      OMG! You're the only other person who has tinnitus like mine that I've found.

      Sometimes, ANY muscle movement is audible. I can press down with my toe, finger, arm, etc and hear a slight increase in pitch. I can hear the sound of my breathing muscles, and yes, there's a sound that sounds like my heartbeat but seems to go at about half the rate (I suspect it's not heartbeat because it doesn't sync up, but I don't know what it is...)

      I also had a very quiet tinnitus for a number of months, to the point I didn't realize that was tinnitus until now. Then a sudden peak a few months ago and now it's much louder.

      Stress, dehydration, and lack of sleep also cause my tinnitus to get louder. And I am also unaffected by loud environments like fairs and concerts. Foods like salt and alcohol seem to have no effect.

      I however, have never smoked an e-cigarette, and DO have some hearing loss. I was unaware I had hearing loss, but when I took a hearing test there's a slight dip between 500 hz and 8 khz. Mostly at 2khz, which was a 20-25 db dip. I have no good explanation for this hearing loss.

      I did have a vitamin D deficiency, and recently tested positive for a past exposure to EBV, which I think is maybe what caused the spike.

      My tinnitus sounds like a slightly crickety sine wave mostly around 15.5 khz
       
      • Like Like x 1
    8. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Thanks for the response @Mad maggot! Good to hear from you again.

      The day after I quit the E-Cig, I woke up with extreme ear fullness, ear pain, inner ear itch, fleeting facial pain, and VERY tender jaws. Most of these symptoms have passed, I really only experience mild fullness, occasional pain, and my jaws are tender about 50% of the time. I had an MRI on my jaw which ruled out TMJ however. There was definitely a decent amount of weird pains, feelings, and sensations in the initial couple months involving my ears, sinuses, jaw, Etc. but most of that has passed. The main issues I have now, aside from T, is the mild ear fullness, mild/moderate ear pain, and neck pain.

      Hope things have been good MM! Thanks again for the reply!

      -Steve
       
    9. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      Wow @Crake , it really REALLY sounds like we may battling a similar bully. My T sounds JUST like yours! My T is very somatic just like yours, the description of how your T sounds is very similar to mine, (mine also twinkles or hisses sometimes), it is not affected by foods, etc. Oddly enough I also had the EB Virus/Mono at about the exact same time I started to hear my T, (about 9 months before it became problematic.)

      I also suspect that I have an iron deficiency and probably numerous vitamin deficiencies. I am currently working on that side of things....Is there anything that you've found that helps your T? I have a suspicion that T like our own is largely if not totally inflammation based. My next move is to try and get a round of prednisone to test this theory. Have you tried any steroid anti-inflammatory medications?

      Thanks so much for the response @Crake , keep in touch! You're definitely the only other person I've found with T just like my own...

      -Steve
       
    10. Crake

      Crake Member

      Tinnitus Since:
      04/2015
      If you think you have deficiencies, you should go to a doctor and get your levels checked. I do have a slightly low iron level that I'm taking supplements for in addition to the vitamin D.

      The only thing that consistently help mine is lower levels of stress. When I have no work I need to do it slowly quiets down over a few days, then when clients start giving me work it gets loud again... Bananas and oranges seem to help a bit as well, but I'm not sure if that's a coincidence.

      I think that's a big clue, when my tinnitus started getting really bad, I had a cough, a really bad headache every day, weird sternum ache, odd mood changes like panic attacks and depression, and burning skin pain/random sharp skin pains.

      All the doctors said it was probably just stress, but I've been stressed before that this was far more extreme. It's been clearing up since then but leaving the tinnitus. I strongly believe this was EBV, because I have little explanation.

      Yeah, that's what I've been assuming, especially because I developed really bad eye floaters at the same time this was all happening, those are also permanent and did'nt have them before.

      When this all started I begged several doctors for prednisone, and even made several appointments just to ask for it, but they all said "that's only for sudden hearing loss, this is different" and wouldn't give me any. I strongly suspect that if they had given it to me I wouldn't have developed these eye floaters, and perhaps would have had less tinnitus.

      Getting them now won't do you any good though. It's not "ongoing" inflammation that causes the sound, it's the damage caused by inflammation in the past. Studies that were done with "sudden" hearing loss found prednisone helpful only if taken within the first month, but for it to make a big difference it had to be taken within the first 3 days... So yeah, it WAS inflammation, but it's too late to treat it now, now the nerves are just damaged...

      I've also tried taking zinc, magnesium, and multivitamins to no effect. I've also tried taking claritin for a few weeks to no effect.
       
    11. SteveSkis92
      Dumb

      SteveSkis92 Member Benefactor

      Tinnitus Since:
      12/2014
      Cause of Tinnitus:
      Ototoxicity from Electronic Cigarettes (Propylene Glycol)
      @Crake I do hear what you're saying, but I really think that ONGOING inflammation may be the cause of at least my T. There is a recognized form of tinnitus called Somatosensory Pulsatile Tinnitus. I think that maybe you may want to look into it a little bit. I'm not sure in your case since you do have hearing loss, but the fact that I have no hearing loss AND my T is so easily somatically influenced makes me believe that the E Cigs may have further inflamed my already bad neck and back.

      This type of T isn't due to cochlear damage, but rather to a compromisation of the Dorsal Cochlear Nucleus (DCN) via inflammation of the surround muscles. This type of inflammation could start anywhere from your back, shoulder, neck, jaw, etc. since all these areas are so interconnected. I find it very unlikely that I got T with no hearing loss AND jaw pains for the first time in my life at the same time totally by coincidence.

      A round of prednisone would be a perfect diagnostical tool. If it abolished my T, I would know it was inflammation based. The effect would only be temporary, but from there I could make lots of anti-inflammatory measures in everyday life that could at least improve the symptoms over time.

      Do you or did you have any noise sensitivity or hyperacusis @Crake ? Do you have any jaw or neck problems?

      Thanks again for the response bud, hope the days treating you well!
      -Steve
       

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