Cycle of pain

Discussion in 'Support' started by john2012, May 1, 2014.

tinnitus forum
    1. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      hello everybody,
      this my 1st post. my tinnitus manifested some weeks after a concert in 2012, way too loud. . Its been a very tough road since then.

      My tinnitus is a mix of high frequencies between 6000 and 12000, some constant, some cutting in and out. I have never really coped, never had the money for treatment, and have just languished in it. Having found work and recreation almost impossible, I've become a zombie, unrecognizable to friends and myself. I now feel at a complete end and and am looking for help from this forum.

      I know that many have made it through. My problem i feel is that the I find my tinnitus painful and that the more painful I find it, the more painful it becomes. Its like listening to an orchestra of nails being scraped down endless blackboards.

      Maybe Im not as mentally strong as I thought I was but it is overwhelming. My entire life is filtered throught this lens of pain, from conversation with friends to reading a road-sign. Masking has been ineffective so far.

      The audiologist agreed that this is not so much a hyperacusis issue, which I do have, but instead a tinnitus pitch extreme discomfort issue. The loudness is a secondary issue in my case. If anybody has adjusted to these conditions, please let me know as I have already crossed my pain threshold many miles back and am suffering immensely. I understand that tinnitus cannot kill me and that I must modify my reaction, but the splintering pain does not make it easy for my brain to classify this unknown stimulus.

      John
       
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    2. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Hey Jon sorry you're doing so bad. Has it gotten worse or is it the same? Also sounds like you've done a lot of negative reinforcement over the years making it harder to habituate. Was it always this bad or over the years has it gotten worse? Was there ever a time you were doing well? If so what changed since then? There are some people who have quite loud t on here and are doing well. I'm confident you can to but it does seem to me like getting professional help is something you should do. After two years if your not doing well my opinion would be to see someone who can treat t and has experience treating t. It can be every bit as debilitating as many conditions which people seek professional help immediately.
       
    3. tychobrae
      Alone

      tychobrae Member

      Location:
      UK
      Tinnitus Since:
      02/2008
      Hi John, you say masking has been ineffective, have you tried different sounds? One of my tinnitus sounds is quite high-pitched and I find some sounds are a better distraction than others. Also, do you 'mask' at a lower volume than your tinnitus? For habituation to take place you need to be able to hear your tinnitus as well as the masking sound, since you can't habituate to something you can't hear.
       
      • Agree Agree x 1
    4. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      cullenbohannon, thank you for the questions and good advice. Right now I feel very alone. My tinnitus has been pretty much the same since it started. I have never really adjusted to it. Many years ago in my teens I experienced tinnitus for a year which resolved itself, meaning vanished, I feel due to TRT and my ability to not over-react, so I understand the basics of getting better. However, it was pretty loud and not painful in character. My present tinnitus by comparison has the crack of a bull-whip. I dug up my notes on the neurophysiological model and re-introduced my WNG to no avail. The frequency is way higher and I cant really afford much else for now.

      Thank you also tycobrae for your help. Different sounds, yes I've trawled for them. Some people's lives have been changed by finding the right matching sound. Some of the stories I've read give me hope. After endless counselling and numerous therapies, a simple track can change one's world. It is what I'd like to do very much. Just some relief would be welcome right now. If your high frequencies get masked, then so should mine. Any suggestions?

      Thank you again to both of you for caring about my plight. I do want to keep up a positive attitude.
       
    5. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      Ok john anything I can do you can pm to talk or anything. The fact that it hasn't gotten worse to me and I am not a doctor so bare that in mind. Might be that you have kind of reinforced the thought and feeling that it is painful. Can I ask what TRT did you do? Was it with a TRT clinician? I still think some sort of treatment is the best option but of course if you can afford it at the moment this site has great info. We have to figure out how to stop associating negative emotions which I'm not a clinician but stay strong and positive. Mine is also hard to mask but I am doing better, so don't worry on the masking. Play something soothing and try to concentrate on that. It's what I did I couldn't really mask so I played another spund and tried to listen to that. Also I don't know if you've seen anyone for anxiety or depression but I would. Ad and anti anxiety meds specifically for me were god sends.
       
    6. Mr. Cartman
      Artistic

      Mr. Cartman Member Benefactor

      Location:
      Norway
      Tinnitus Since:
      12/2013
      Hi John!

      Im so sorry to hear that you are having such a hard time!

      I also have a really high pitched piercing T, and the only masking sound I have found that totally eliminates my T is the sound of a shower:

      Sound therapy for tinnitus 2Hr shower water


      I hope it can work for you as well.

      Stay strong! We know what you are going through and we are all here for you!! :)

      Best wishes
       
    7. attheedgeofscience
      Uninvolved

      attheedgeofscience Member Hall of Fame

      Location:
      Denmark
      Tinnitus Since:
      Childhood
      Cause of Tinnitus:
      Head Injury
      I don't know what to say...

      The best advice I can give - in your case - is to decide on a strategy, and then stick with it...!

      Possible strategies could be:

      1) TRT.
      2) Intramuscular B12 vitamin injections.
      3) Xanax.
      4) Low level laser therapy.
      5) Hearing aid?

      No doubt you have already searched the Internet from A-Z at this point. So the above is quite possibly not news to you - I realize this. I also realize that the above treatments cost money to some degree. But, if you somehow really decide to go for a specific treament, then enlist the help of those around you. My advice.

      Take care.
       
      • Like Like x 2
    8. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      cullenbohannon
      thanks for the reply again
      yousaid "Might be that you have kind of reinforced the thought and feeling that it is painful"
      this is interesting. maybe its possible for the brain to 'convert' aversive shrill signal to painful perception.
      Reversing this would be most welcome. Your inner wisdom suggests its possible by correct emotional association.
      Often it is nearly impossible to to just rest up because the sound 'pain' intensifies, loops. Same with conversation. would be encouraging to feel I can disconnect this cycle. godd to know you're moving forward without traditional masking.

      Playing something soothing sounds good, but so many things seem to contrast with and thereby accentuate my experience of the tinnitus. Do you feel that persisting with say music, though aggravating at first, will pay off if one pushes through? I do miss watching and listening to things and have wondered if this is common and needs to be trained up with repetitive practice. thanks for helping.

      mrcartman, thank you also. yes, the right sound i need to find, to remove stress buildup.
      attheedgeofscience, thanks. benzos i've tried, have helped but dpendency builds, hearing aids I should have tried, but money...
       
    9. In other tinnitus boards I see others complaining of painful tinnitus and they aren't referring to hyperacusis.
       
    10. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      John I remember having a sound that was painful. I would walk into a room and I felt like my ears were being assaulted, when I stopped playing sounds again same thing. Maybe start with something low volume level and work your way up. It's probably a good idea to give yourself other sounds to listen to . Dr Nagler letter to a t sufferer and henry Wilson book can help you with the emotional response. Tinnitus can cause depression and anxiety and of course it's ideal to get the underlying cause treated address these as well. Check these threads as well john. I don't if it will or won't be helpful but I thin there is good info on them.

      https://www.tinnitustalk.com/threads/effect-of-time.4105/

      https://www.tinnitustalk.com/threads/barriers-to-habituation.4615/#post-45243



       
    11. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      John you don't have to completely stop listening to sounds watch shows movies and listen to music but at moderate levels.
       
    12. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      cullenbohannon, thank you so very much for the attention and energy you are giving to my situation. You make very important points and a lot of good sense. I know how important it is to listen to sounds and not isolate myself as this will amplify my problems. This has undoubtedly delayed recovery. The fact you can remember having a sound that was painful gives me hope that the mind can morph this sensation into something less unpleasant over time.

      I have a deep feeling or hope that somehow my own aversive sounds can mellow over time helped by moderating my own reaction to them. I get this from occasional 'glimpses' of an altered mind state, sometimes when I heavily engaged, though it doesn't last long. So its rational to assume that getting involved in movies, etc, would be progressive stuff. However, when I try to do so, its like my sounds contrast even more sharply. Maybe time and persistence will change this, as the brain adjusts somehow. Presently tt doesn't matter where I am, in quiet or relatively noisy environments, I presently feel my sounds as grating and hurtful to the point of despair sometimes. A pal begged me to join him for a fun game of baseball the other day. The whole time out it was dreadfully tormenting. Id like to think my mind can reframe this somehow so that I feel less. I don't feel I'm depressed in the normal sense, reactively yes for sure, concerned that I need to deal with the root cause, that grating noise, though I know meds have their place. It's a shame because I've always run and I can't seem to walk at the moment. Thanks cb. I'll try waht you suggest about introducing the sound, have you ever had a problem with your own sounds clashing with music, etc?

      Street Spirit, yes it's certainly true, I'm surprised I've not read about it more, as high pitched sounds are generally unpleasant.
       
    13. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      hi again, i looked at the 'effect of time' link, thanks your post was tremendously good. Dr.Nagler wrote that its possible to habituate to non-painful stumili. A I find mine painful I really need to learn how to not feel it in such a manner. I'm convinced this why I've not been able to move forward. I feel these spikes of sound as if they're physical sensations not simply loud, in fact some of the distressing sounds are not that loud, its their quality. How to adjust I'm unsure. I feel depleted by the assault. Friends say I should just bear it.
       
    14. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      I wish I could do more but that's where I think an experienced clinician could help you. If you can get yourself to stop reacting to it in that negative way maybe this can stop the cycle. It's a good idea to keep sounds around you and try to focus on them. So you will slowly pushed the t to the background. As far as the depression goes I'm quite experienced with this and the thing is many times even if it's being caysed by something else you can do things to treat it and depression is a weird thing sometimes you can fix the root cause and it will linger. Getting this treated is a good first step and won't be as expensive as the therapies but again I thonk something like cbt or TRT would be your best bet. Things you learned in TRT and from dr nagler letter you need to do them everyday. Many people on here have taken a while to habituate even when using a thing like TRT or cbt but it can be done. If one other person on this earth was able to do it that means you can to. I really belive the xanax or an antidepressant will help as well and again finding the right clinician.
       
    15. cullenbohannon
      Thinking

      cullenbohannon Member Benefactor

      Tinnitus Since:
      1/2014
      John please also see dr Hubbards bio and how we got over his t. His was quite a severe case.
       
    16. Littlebailey

      Littlebailey Member

      Tinnitus Since:
      03/2014

      I know it seems almost impossible, but I'm sure you can eventually habituate to this, as terrible as it may be. The goal is to accept it, if not embrace it, and then let it go and forget all about it entirely. Though I basically believe a cure could be around the corner, maybe the best way to approach it is to say goodbye to the past, and boldly step forward into this new phase of your life. Maybe that is sort of embracing it. There's too many people out there who also suffered with terribly intrusive T who were able to adjust and leave it all behind them for you to not do the same thing. It can and will take time, but you will be no different yourself in time.

      You will get past this! Stay strong.
       
    17. john2012

      john2012 Member

      Location:
      Germany
      Tinnitus Since:
      2012
      cullenbohannon thanks for the thorough advice esp on depression. maybe I feel my sounds so intensively because of emotional state eventhough I believe they are intrinsically aversive. Will look at Hubbard, thanks so much, take care.

      littlebailey, thanks for the encouragement, I need it. This has been worst day of my life, its like there's been no escape from the piercing pain, its quite frightening almost being unable to live. need to build up strength somehow.
       
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