Almost a year later... I need advice

Discussion in 'Support' started by sword&shield, Oct 14, 2013.

tinnitus forum
    1. sword&shield
      Wishful

      sword&shield Member

      Location:
      Italy
      Tinnitus Since:
      12/2012
      It's been almost a full year since my tinnitus appeared, inexplicably and suddenly. At first faint and localized to my left ear in the form of a costant buzzing, then gradually stronger and extended to both ears, it has managed to disrupt many things.

      I loved silence because of my musical interests, especially composition, which might appear contradictory but truthfully it's not. Not being able to appreciate complete, sheer silence has compromised my carefree spirit in everything that concerns sound.

      Now, one year later, with my left ear buzzing to its climax as I write this post and my right ear exhibiting its other, completely different, shrill and monotone whistle, I just humbly ask for some advice.

      What could I do to try and reduce its volume? I've seen many ENTs, done many exams, taken product such as Ginkgo, vitamins and magnesium to no avail. It all seems so arbitrary.

      I'm wondering if actively listening to masking sounds, sch as white noise, could produce residual benefits in the long run? Should I dedicate myself to daily exercises, perhaps? I've seen many recommend all and every one of these things, I'm wondering if any of these suggestions could factually help. Habituation is definitely not an option.

      I'm just so clueless.
       
    2. object16
      Magical

      object16 Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      1988
      i feel your pain. it was already fairly bad in my mid 30's - i had occasional rare tinnitus in my 20's which gradually changed from intermittent to constant - had to drop out of symphony orchestra violinist which was really devastating -
       
    3. Relic Hunter
      Cynical

      Relic Hunter Member Benefactor

      Tinnitus Since:
      01/1990
      The problem with tinnitus is its so personal in the way it effects each person. I have long since stopped searching for a cure for mine. I went thru the usual expensive tests , ENTs, over the counter useless medications such as Ginkgo, magnesium, the list goes on endlessly it seems.

      I use white noise a lot. Generated by a pair of hearing aid type devices. On the bad days I will go to sleep with them. At night I use a electric fan to generate noise as well as a sound machine. I have custom made hearing aids also with a channel of built in white noise. I rarely wear the aids thought

      I have taken Benzo drugs in the past to cope with the anxiety, but would not recommend those as they are very addictive and I had a lot of trouble coming off those. I now take an antidepressant called REMERON. It helps me sleep and has a very small chance of further damage to my ears.

      I try and stay busy but my other health problems often limit that.

      Seems I have replied to your post by just talking about MYSELF. But in reality that is all any of us can do. There just isn't a pill or device that works for everyone so all we can do is relate our experiences, both good and bad.

      I feel your pain, I understand. We understand. This is a great place to come to because the people here do understand when at times it seems to me that no one else does.
       
    4. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      I understand your pain, I study composition/do a bunch of electronic music stuffs - too many years of partying and not looking after my hearing owned me (even though my hearing is technically still really good). I have multi-tonal tinnitus (6+, changes a lot), hyperacusis (or chronic ear pain, I haven't got a clear answer yet) and tensor tympani syndrome (certain frequencies trigger my ear drum to flutter).

      I've written this a gang of times now but best thing to deal with it is exercise, diet and lifestyle. My mentality and severity of symptoms change dramatically when I'm keeping healthy. I'm talking lifting, cardio 4+ times a week, taking a bunch of vitamins and trying to eat right. Also keeping busy helps tremendously.

      Vitamins and supplements are tricky since there's so much conflicting information about them, but I take them anyway - I did before the tinnitus anyhow. Stuff like a multi-vitamin, b-complex (or b3 and b12 more specifically), magnesium (chelated or something that has a good bioavailability), zinc and NAC are good. I also like to take 5htp periodically. Melatonin is good if you're having trouble sleeping. Try to get a good diet going, a better feeling body = less stress = less tinnitus.

      Also make sure you're protecting your hearing with musician custom fit ear plugs if you're performing or somewhere loud.

      When it comes to composition, experiment with methods where you can still be creative while not being distracted by the tinnitus, using light masking while in the idea stage to get your stuff going and then when you really want to fine tune things turn off the masking and do what you need to. I found that when I got really into doing a track, my tinnitus wouldn't bother me.

      I've had to take a bit of a break due to worsening hyperacusis/ear pain though, this was my fault because I did something a bit silly - just be smart with how you look after your hearing and hopefully you will adjust, the idea of habituation sucks but it's a pretty powerful thing the brain is capable of.
       
    5. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      So Yonkapin... You have ear pain? Does it feel like an ear ache? I have been having increasing pain in my right ear and am thinking I have an ear or sinus infection. I went to my acupuncturist doc yesterday who also looked down m throat and sad yeah, could be an infection, but I don't want to give you antibiotics right now. Well, I don't want to walk around with a worsening infection. But could it be hyperacusis?
       
    6. yonkapin

      yonkapin Member Benefactor

      Location:
      Melbourne, Australia
      Tinnitus Since:
      March 2012
      Well, my ear pain has been pretty tricky with me! I had ear pain in left ear on and off since getting tinnitus but it mainly went away and my tolerance to noise was pretty good, I still had tensor tympani syndrome but it was pretty minor.

      What triggered my most recent struggle with the pain though was when I performed the valsalva maneueva in June to unblock my ear (left ear often feels blocked up) and then triggered some pain (could've caused some sort of barotrauma), then I decided it would be a good idea to go to a massive club gig few days later (with plugs but still, should've known better!) and the pain has been on and off since, there's no real explanation for it and I'm not sure if it's hyperacusis because it doesn't always co-inside with exposure to noise, but it can get pretty bad. I got the doctor to put me on prednisone temporarily for the pain recently and it's gone from 9/10 to basically 0/10, so I'm guessing I have some sort of inflammation. I do have enlarged tonsils and adenoids (massive apparently) and always wonder if they are playing a part of my problems, and I think I remember you mentioning you also had similar problems growing up in another thread (sorry if I'm getting mixed up here).

      Anyway, feel free to PM me if you want any more info or discuss ideas, etc! I don't want to side track this thread with my stuffs, haha.
       
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    7. sword&shield
      Wishful

      sword&shield Member

      Location:
      Italy
      Tinnitus Since:
      12/2012
      Thanks for all the kind messages. Hearing others' experience, especially how everybody in his own personal endeavours is actively trying to fight back this obnoxious noise, is incredibly helpful to me.

      I *am* trying to keep pursuing my usual interests, especially composition and everything that relates to music, and since the onset of my tinnitus I've always pushed myself to do so in spite of my fears.
      However it's proving harder than I thought, because of the total unpredictability of things such as intensity and frequency of my symptoms.

      What further aggravates this scenario is the fact that my tinnitus appeared all of a sudden, with truly no evident logical reason. I had no noise trauma, I don't even enjoy or attend loud places such as clubs. Never had accidents or operations that affected my ears. My blood pressure is apparently fine. My hearing was tested thoroughly quite a few times and luckily I don't have any specific loss in that regard. Doctors (and Medicine in general) cannot really seem to pinpoint the cause.

      I'm a very rational person and more or less I've always had a firm control on several aspects of my albeit young life. That's why I'm also pretty positive that habituation is not an option I can contemplate.
      I know myself: the cognitive-behavioral approach, that is the basis for such habituation processes and also for Jastreboff's TRT, works by tackling the emotional response of the subject. It is an interesting method and I'm happy if it manages to provide benefits to some, but personally I can't help but always think of the perception itself, its implications on everything I've always enjoyed and nurtured, as well as the fear it might worsen day by day.

      I can't honestly fathom how one would habituate to such an anomaly, as much as I can't fathom how it's possible that medical research has yet to elaborate a successful and universal treatment.

      Sorry for the long-winded speech. Anyway, any and every personal suggestion is absolutely appreciated. I will see other ENTs and keep fighting until I can shed some light on this phenomenon, but in the meanwhile any practical daily tip will be like a wonderful melody, literally, to my ears.
       
      • Hug Hug x 1
    8. Hopeful
      Wishful

      Hopeful Member Benefactor

      Tinnitus Since:
      06/13
      Dear sword&shield!

      One of my best friends is a professional jazz musician and after having tinnitus for 15 years he now plays in big bands without earplugs. His tinnitus has not worsened.
      It does not bother him anymore. He can't remember pure silence. I can't fathom this myself, but as he said: 'I can't remember when I stopped freaking out about it'.

      He tells me that all the musicians he knows of with tinnitus returns to music at some point. I know of several others whose symptoms have not increased. Many experts have told me that 'tinnitus is not progressive' - this forum, though, is trying to teach me otherwise.

      In a symphonic orchestra in my country, when asked about tinnitus, 25% responded 'yes'.

      Even though I am terrible at this myself, I am trying to develop a more positive attitude towards the noise. A lot of the evilness of the sounds are what they prohibit me from doing.

      Good luck :)
       
    9. erik
      Breezy

      erik Manager Staff Benefactor

      Location:
      Washington State, USA
      Tinnitus Since:
      04/15/2012
      Cause of Tinnitus:
      Most likely hearing loss
      Tinnitus has always been considered a mystery and not very well understood even by researchers. It has only been in the past year that they have identified the mechanisms for tinnitus and even more recent that tinnitus scientists and researchers finally agree it's more of a brain issue than not.

      Tinnitus for us all is the same, yet so different. It takes us over, consumes us and makes it seem like we have not control. And maybe for the T we don't. But there are many other things we do have control over. We have to deal with it in different ways and find our own unique solutions. We pretty much have to become our own guinea pigs. What works for some, may not work for others and vise versa.

      For some it may be taking supplements or anti depressants. Others may need listening/white noise devices. Others it may be TRT, or both. For me it was really doing nothing for my T because after seeing countless doctors, I realized there was really nothing that could be done from a medical standpoint since there was nothing medically wrong with me.

      But that didn't mean I couldn't do other things I had more control over. I was also suffering from extreme anxiety, fear, panic and stress. I was in a bad, low place. I decided to make that my focus. Over the course of a year, things slowly improved but they did. I got my stress under control as best as I could and took care of my anxiety. I focused on making my life more meaningful and live in the now. I took better care of myself, I started to exercise and play sports again, I went to CBT counseling weekly to learn to change my negative thinking, I volunteered every week to help the needy (I still do) and I worked to improve relationships with my family and friends. When I realized I had more control over me than the T, I started to get better.

      The noise is still there. I hear it every day. It doesn't send me into a panicked frenzy any more. In fact, I usually hear it, then ignore it and go about my business. Sometimes, it gets louder, really loud and sometimes it is whisper quiet. But for the most part I don't care. T doesn't prevent me from doing anything I want to do. I just do it. If its going to be loud. I bring ear plugs. The important thing is I do what I want when I want. I have that control. I cannot worry about it getting worse now. It may or may not. But I cannot worry about something that may or may not happen in the future. My father has had loud T for 30+ years. He says it has always been the same. Never louder.

      Have I habituated? I don't know. I just know I feel good even with the T. I know I can live my life a normal person again. Would I still like the noise to be gone? Yes, but I don't think I would be any happier at this point, may be just a little less annoyed at times.

      Try these tips: 9 things you can do to be happy in the next 3o minutes

      http://www.realsimple.com/health/mi...-happy-next-minutes-10000001809876/index.html
       
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    10. Sherri786
      Dreaming

      Sherri786 Member Benefactor

      Location:
      Canada
      Tinnitus Since:
      03/2013
      Hello sword&shield

      Since last week I started taking Niacin everyday ( somedays 500 mg some days 100 mg ) brand name " webber naturals" also vitamin C called "bioCgel" it's a fruit bioflavonoid 3 pills 500 mgs each. Seems like it has brought down the volume quite a bit, together with 400 mgs of magnesium at bedtime. I didnt take any yesterday just to test what happens and my T is loud again today.

      Best wishes
       
    11. LadyDi
      Busy

      LadyDi Member Benefactor

      Location:
      Florida, USA
      Tinnitus Since:
      06/2013
      Cause of Tinnitus:
      Barotrauma/airplane
      Of your many fine posts, I think this may be one of your best yet, Erik. This is one I will save for when days are hard. A lot of wisdom here. Blessings. You have learned much from the worst of times, which says a lot about you. We are lucky you are here to guide the rest of us.

      BTW: I think CBT has helped me more than anything else I have done in my extensive T regime. When I had my intake with the audiologist who will be doing my TRT, she sighed and said it was so hard to convince patients such therapy was important. What a shame.
       
      • Like Like x 1
    12. christine kauhane
      Sunshine

      christine kauhane Member

      Location:
      honolulu hawaii
      Tinnitus Since:
      june 9th 2013
       
    13. gary
      Transparent

      gary Member Benefactor

      Location:
      Macomb, MI. USA
      Tinnitus Since:
      07/2012
      Cause of Tinnitus:
      Who Knows
      Thank you Erik, for sharing your personal tinnitus tribulations. You're reply is one of the most inspiring and motivating stories I have read here on TT.
       
    14. sword&shield
      Wishful

      sword&shield Member

      Location:
      Italy
      Tinnitus Since:
      12/2012
      Thanks for all the very reassuring, informative and especially kind messages, in particular to Erik whose post I really appreciated. Just by reading such lines of advice, it's easier to keep a calm and collected attitude and bravely tolerate any buzzing and any noise.

      I still have my doubts as far as CBT is concerned, perhaps because I find these methods (including TRT and any mechanism that involves counseling within its therapy) cannot be really considered a cure.

      Of course the benefit provided at an emotional level might be overwhelmingly positive and I'm absolutely open-minded about its effects, but a cure should be deemed so whenever the symptoms are erased from the patient's perception or, even better, the actual pathological cause is tackled directly. Nothing of this happens in habituation, a term which personally I find "Tinnitus Literature" to be handling a bit too arbitrarily: what makes one exactly habituated? Is there a measurable state? Are there permanent and temporary forms of habituation? I for one don't accept the concept of habituation rationally: I might even look forward to it in the future, there's no point in denying it since anything that eases my stress would be very welcome, but on a conscious and rational level I would consider myself healed if and only if the buzzing in itself, the ringing, the whistling fade away.

      I will restate that my tinnitus is a very mysterious and incomprehensible phenomenon and that devastates me the most. I do dabble in music composition every now and then, but I've always avoided particularly loud sounds, so the cause of my T remains to this day inexplicable.

      Besides there are many little characteristics of my case that doctors can't seem to understand or link to other aspects: for example the oscillation in the volume in both ears, which does not depend on anything I hear, do or even think; the fact that whenever I tap my right ear with a finger or untap it, the sound changes. I can modulate the sound in my right ear based on whether it is tapped by a finger or pressed on the pillow, or not. That is another riddle.

      So yeah, it is a mystery through and through. And I'd love modern science to pour even more attention and money into its active research.
       
      • Agree Agree x 1
    15. Per

      Per Member

      Tinnitus Since:
      06/2013
      At times I think TRT is hindering the development of a real medical cure cause it's sending signals to the health governments around the world that these T patients will get better just by mental training, so no need for putting money into finding a medical cure. This in addition to the fact that most nations don't put an illness stamp on T but choose to call it a condition doesn't make our case any stronger. On the other hand I cherish Jastreboff's theories and TRT because its working for a lot of people. It's positive. So all in all I feel ambivalent towards habituation, perhaps I'm just still in denial and refuse to back down to it. Perhaps habitation is too passive and basically an admission of failure - at the same it's a symbol of the opposite. A victory for those who managed to live with T and lean INTO the illness. Like a very drunk Nicolas Cage says in the movie Leaving Las Vegas: "We lean INTO the bar". It's a matter of swimming with stream and not towards it, but I'm not quite there yet. It's like something inside me is telling me to fight this thing off. It's more like a fight mode than a flight mode if you see what I mean.

      Sometimes I catch myself thinking I might as well become a drug addict, an alcoholic or something very destructive if T is going to be my life. Sometimes I just feel that I might as well ditch the whole idea of a constructive life with a job and mortgage if T is going to be ringing trough it all. I might as well get some freedom out of life and say goodbye to all normal and expected behavior. I guess its just my mind wandering about when it gets too ruff.
       
    16. Paul D
      Balanced

      Paul D Member Benefactor

      Tinnitus Since:
      03/01/2010
      Over the last year I’ve come to realize that the only thing I have control over is my reaction to Tinnitus, not the severity of the condition itself at any point in time. Constantly monitoring the intensity tends to make a bad episode worse and a tolerable or quiet period shorter. Yes, sometimes internal noise level is overwhelming, downright depressing, but accepting the condition for what it is and pushing through it is the only solution I’ve found. Erik points to the importance of taking care of oneself; exercise, stress avoidance, recognizing anxiety, and simply focusing the primary attention elsewhere - shaking off that debilitating negativity. As with most things, this (my current T level) too shall change. I now look to times when I can play music, I can hear silence (or almost) in the wilderness, I can have a day focused on work or others where my T is far in the background. Rare, but it does happen. The T’s not going away…the only thing I have control over is my own perception of and tolerance for the condition.
       
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