Tinnitus and Hyperacusis Has Turned Into Chronic Ear Pain

Discussion in 'Support' started by Lesky, Jan 23, 2013.

tinnitus forum
    1. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      My tinnitus and hyperacusis has turned into chronic earpain.

      This post is a WARNING to all members of the board - the hearing system can collapse and not be able to recover from repeated noise traumas - my life is ruined because of irreparable damages - there is no limit for how bad it can get! I do not expect to live much longer, If I choose to die, this is my farewell.

      Please read this post and remember - better stay safe than sorry!

      ---

      Greetings.

      I´m a 26 years old male from Sweden that got tinnitus at age 11 in 1997. At 17 (2003) my "normal life" ended with severe hyperacusis. And at 21 (2009) my life outside of the house ended with a first spell of chronic ear pain. Now at age 26 (2013) I am slowly dying alive.


      Here is a picture of myself, so you can see for yourself that I am normal person just born with "ears made of glass".

      LESKY3.jpg

      The main focus of this will be the term "chronic ear pain" which most people are unfamiliar with.

      It will be a long read, but trust, you´ll want to be warned! Because if it could happen to me, it could possible happen to you!

      I thought it would be good to summarize how I have acquired all these problems to make it easier for you to give me advice knowing the full background.

      Summary of the sound incidents that have ruined my existence:

      Time - Happening- Consequences

      1996, January - Firecracker exploded on a balcony which amplified the sound. (Tinnitus as consequence)

      2001, May - A teacher struck a pointer like a sledgehammer on a table just by my head (Tinnitus worsening and first signs of hyperacusis. From that on I stop going to concerts, parties etc)

      2004, August - a 50 minute moped ride without helmet on the highway. So stupid. (My hyperacusis went wild and tinnitus again got louder)

      2004, September - MRI at the local hospital.The doctors more or less forced me to do the scan, it was aborted at aprox 65% due to severe ear pain. (Louder tinnitus than ever after the procedure but it fades back to its normal state. Hyperacusis full blown now.) I became depressed, had to quit high school, lost girlfriend and stopped with sports activity because of the hyperacusis.

      2006, June - After recovering for 2 years I was working at a gas station. A colleague opened a cane of coins by hitting it at the steal cash register while I was bent over an open toolbox. The blow was like right by my ear (First signs of chronic permanent ear pain appears, meaning aching for hours and days in a silent room.)

      2007, March - ACOUSTIC SHOCK INJURY (Changes things amazingly to the worse, and produces a whole new level of pain and suffering) Still worked at the gas station. Answered a portable phone, the chief had forgot to turn the speaker phone off. First no one said anything, so I am pressed the phone against my ear to hear better when suddenly a half deaf old lady screamed "Hello". I dropped the phone and was completely shell shocked for a few minutes. (Chronic ear pain, louder tinnitus and extreme hyperacusis just ruins my life) I was forced to quit my studies, my job and also break up with my girlfriend because I could not bear to communicate or even have sex with her. Physical activity starts to increase tinnitus and ear pain for the first time. I thought I had hit rock bottom – I was wrong!

      2009, June - After 2 pretty miserable years I was losing patience and exposed myself to too much sound combined with too much pulse activity. I was following my favourite team the Pittsburgh Penguins to their Stanley cup triumph. During the deciding game 7 of the finals my heart was pounding like hell during the entire game. After the game finished my ear collapsed and for 4 months I was never pain free and could not tolerate any sound at all – I thought I was done. That was “chronic ear pain” and it was horrible. I wrote goodbye letters to friends and family and retreated to bed for more than 3 months, I did not leave my room. I started taking Mirtazapin and slept 15 hours a day.

      2010 - Starting in June 2009 I did not speak or listen to any sounds for 15 months. My idea was not to provoke the “chronic pain” and it worked very well. The pain and symptoms slowly was reduced to a minimum and I could once again take walks and masturbate without more than temporarily increases of pain and tinnitus. Amazingly I could also listen to music and speak for shorter sessions. At first I was extremely careful not to stress my ears too much and as long as I kept that in mind all the time I was OK. But at the start of 2011 and the longer the pain free stint lasted I got gradually more careless and greedy. Started seeing TV programs with sound and listened to music for longer episodes. During 2011 I began focusing more on getting back to a normal life than the risk of setbacks. I accepted more and more discomfort from sound gradually which opened the door to the disaster that was about to come.

      2011, October - After have gotten much better in the last 2.5 years I overload my ears with 4 days of 6-8 hours a day of Michael Jacksons murder trial radio at the poor sound quality of 22-66 kbps. (I do not recall the exact digit) Low sound for a normal person, but it was giving me discomfort throughout the whole time. After the trial stops for the weekend I am waking up saturday with new screaming tinnitus and my hearing system feels completely ruined - tired, aching and giving me all kinds of pain and bad physical sensations.

      2011, November - 2012, February

      No change in ear condition. Hearing system still feels ruined, sound tolerance very low. No chronic ear pain yet though.

      2012 March-April, I was becoming more and more stressed out about not getting better. At the same time I was following my favourite hockey club in sweden and got nervous during playoff games. The increased heart rate caused my tinnitus and pain to go up and it affectd me for days afterwards. My anxiety got worse and suddenly I started thinking "What if I can not calm down after a game?" I was afraid of permanent damage and got my head spinning not wanting to go back to the "chronic ear pain" I had for 3 months in 2009. And just like that I started blushing, sweating, overheating with immediately increased pain and tinnitus as a result. The more I wanted to quit these symptoms the worse it got.

      2012 May: The situation got out of hand because already in the afternoon I would be in devastating pain and taking Zopiclone (Imovane) to sleep = the only way of getting a break from the pain. I tried breathing sessions and yoga but could not stop blushing and sweating. I slept in the afternoon and also in the night, and needed more and more Zopiclone to be able to sleep. Eventually I started on beta blockers as well to try to limit the rushing heart and sweating. it did not help. After 30 days I needed 5 x 7 MG Zopiclone and yet I could not fall asleep and my doctor refused to prescribe more Imovane. Out of Zopiclone I had not choice but to quit them without tapering off. I thought dropping the beta blockers at the same time would be a good idea too. It turned out disastrous. I got insomnia and irregular/racing heart beat. After 66 hours of no sleep with my heart pounding like a sledgehammer I checked in to a chrisis center and got flunitrazepam that finally put me to sleep. After 7 days there I returned home without any addiction and also managed to stop blushing/sweating. I recovered nicely for a week and thought I was out of the woods, turns out I was dead wrong again.

      2012, June-July - The nightmare begins - Chronic ear pain taking over my life

      For the first time in 8 months I was feeling positive again and thats when the following strange things began happening.

      I slipped with my fork eating and the fork hit the plate not particular loud, just normal things that happens when you are eating. When it happened I felt a strange feeling in my left ear and suddenly within minutes I could sense my sound tolerance decreasing to zero along with ear pain. The first time it happened, I did not connect the "fork on the plate" to the decreased sound tolerance. I took it easy the rest of the day and after a nights sleep the symptoms were gone. Unfortunately I repeated the "fork incident" 3 more times in a week with the same symptoms as a result. Initially I was just pissed of that such a low sound would wreck my ear for a whole day, I did not consider any long term problems from it.

      The whole situation moved on a to a new level when I got the same setback from eating chips while reading a book for 15 minutes. So I decided not to eat chips anymore, beginning to feel worried about the direction of things.

      2012, August - The setbacks become a norm - and from lower and lower sounds. The wood in the walls creaking and similar sounds suddenly threw me into "setback mode" with no sound tolerance whatsoever. I also began having temporary tinnitus spikes in connection to the setbacks. By this time I was I reeling and not knowing how to behave or what to do.

      2012, September - I had replaced my iron forks to plastic and changed eating crunchy chips to soft candy. And now this was not enough either. I read a book while eating candy for 20 minutes and my ear became tired and sore afterwards. I could not believe it. Now the previous temporarily "attacks" of setbacks were starting to creep into my life for good and there was nothing I could do to prevent it.

      2012, November-December My life suddenly was all about preventing the pain from becoming permanent. I started spending my time resting my ears so I could eat the next meal without aggravating the pain. Reading it absolute silence for 2 hours between meals got me through the days without much suffering. At christmas it all caught up to me and I the pain begun to haunt me during night as well.

      2013, January - I am now bombarded with horrible symptoms in my left ear/head. Physical sensations, tinnitus spikes, fullness in the ear. My ear is feeling like it had a breakdown 24 hours a day. Sound sensitivity is unbearable and is in sync with the chronic pain. I am living a life with progressively increasing ear pain - basicly I feel like I always have recently suffered an acoustic trauma. Its just wave after wave with symptoms stating that my hearing system is in complete distress. I must stress that I have problems coping with the symptoms though I am spending the days in a silent room, when I am exposed to sound its pure torture.

      On rare occasions the pain subsides for short periods and in these pain free moments I can also tolerate sound of maybe 60 dB instead of the 35 dB that is standard when the chronic pain is raging.

      I do not think my sound tolerance is fluctuating that much, I believe its the chronic pain that momentarily puts my sound sensitivity through the roof!


      The worst thing is that I have been gradually getting worse for 6-7 months without reason, if it continues this way I do not expect to make it out 2013 alive.

      Summary of the current situation:

      Since the 2011 incident there has been no way back from me. Usually over time you would expect the situation to improve as long as you do not expose yourself to any additional noise traumas. (This has been the case for me all previous times) Shockingly I have instead deteriorated to new extreme levels of suffering and all indications is that its bound to get even worse without nothing I can do about it.

      The pain is aggravated by the following:

      1. Physical activity - Sex, walking, exercise, nervousness (increased heart rate means more pain immediately)
      2. Sound.
      3. Me wearing earplugs/headphones (This means I can not move freely even with hearing protection since pain and tinnitus increases within 10 minutes of wear, the longer I wear protection the more intense the pain and tinnitus are becoming) This started after my "Acoustic Shock Injury" 2007 and got incredible much worse after the 2011 sound trauma. See below for reference:


      http://www.dineenandwestcott.com.au/asi.php?fid=1

      Each time I ignore the pain and do something anyway the pain quickly becomes intolerable and persists for days. And the worst thing of all - the pain moves up a notch permanently. This means I am forced to give in to the pain and do nothing unless I am fine with the chronic pain escalating rapidly leading to nothing but a certain death ultimately.

      My hearing system is stuck in "panic" mode which is activated for example after a gunshot heard without hearing protection. Its a dull pain in the ear thats always present while the sound endurance is lowered to an absolute minimum. Therefore my pain threshold is extremely low 35 dB = which is about the same as when I move my computer mouse.

      Obviously its not regular hyperacusis instead "the hearing systems alarm function" that is activated by default - which prevents me from handling sound normally.

      My left ear feels as badly as after an acoustic noise trauma even though I am spending all day in a silent room.

      If we talk %, with 100% being a normal persons hearing, before the 2011 incident I could be at 50-60% and being able to expose myself to sound until my ears got tired. Now my % level would be close to 0 all the time, meaning the bad left ear is always tired/wasted - leaving me no option of sound in my life.

      After the 2007 incident I made a promise to myself that I would never expose myself to sound when feeling pain/discomfort in my ear, and I managed fine as long as I kept to that. Then I was stupid enough to endure pain for days in a row in 2011 and got punished like a ton of bricks coming down on me.

      How am I suppose to listen to any sounds at all when my ear is always aching and feeling dead tired?

      Exposing myself to sound at this stage would be committing the same mistake all over again, so its really putting me in an impossible situation.

      ---
      I will finish with saying the following - do not EVER risk anything because it can cost you your whole life essentially!

      I could have lived a mostly pain free silent life reading books, watching tv without sound, talking walks, chatting forums, enjoying food etc. Not a normal life, but a life yet worth living!

      Instead I am not at age 26 trapped in constant agony with no future but to live on under the worst conditions just because I am afraid of dying and out respect for my family.

      If I could go back to 2010, I would rather live my whole life without sound, than having to endure all these never ending decision making when there is no right choice - just more pain and suffering.

      This message does not come anywhere near close of reflecting the level of pain and suffering I am going through on a daily basis - its impossible to describe in words how it feels, I wish you all could live my life for a week and be able to fully understand.

      I hope this post will make sure people are careful and fully appreciates the greatness of a pain free life! I live in constant unbearable regret of the stupid decisions that have cost me my life, I would trade my legs to be able go back in time and change things.

      Please do not make the same mistakes as I did!

      I will do my best to answer questions when the pain allows me. Thanks for reading! I´ll appreciate any advise!

      All the best
      L
       
    2. Fish
      Balanced

      Fish Member Benefactor

      Location:
      Poland
      Tinnitus Since:
      July 2012
      I have read it and really don't know what to say... I am really sorry to hear how bad is this condition for you.

      But... have you seeked medical help? what about doctors? What do they say about it? Maybe there is some underlying cause you don't know of? If the pain is directly related to your heart rate, maybe it is a heart problem you should take care of? You seem very emotionally distressed, it is understandable. But have you tried something to calm your nerves like Xanax?

      I understand it is very painful for you but I think you shouldn't avoid all sounds completely and sit in a room in complete silence. As far as I know it only makes hyperacousis worse. Perhaps you could slowly reintroduce low-volume sounds to let your ears recover and become less sensitive? When you remain in silence, isn't your T bothering you more?

      Last but not least, do not lose hope by all means! You have recovered before, you can do it again! It takes time, but you should never say it's over. 6 months ago when my tinnitus started my whole life was ruined, and the only thing I thought of was to end it all. I felt like my case was the worst in the world and it was progressively getting worse. Nobody had a tinnitus as loud as mine. I somehow survived the first weeks and put up quite a fight over the next months. Now I am much better, my T is still there but it is not as loud as it used to be and I can live with it and again be happy.

      You really do need help - do not let any ENT doctor tell you to "live with it". I am sure there is a good doctor who would test you thoroughly and see what is going on in your ears. Hang in there!

      Chris
       
    3. BOB3000

      BOB3000 Member

      Tinnitus Since:
      2002
      I feel for you, really do. This is the second time I encounter you. I think you posted a thread at a swedish forum also(Studio?)

      You know, life is harsh. Its not fair. Its really fucking stupid sometimes. I have no comfort for you since I know that things like "It will get better" will just upset you even further. For some of us Tinnitus is like cancer, It just keeps on growing and growing. Sucking everything out of you. As soon as you think that you will be fine. *BAM* The shit hits the fan.

      But one thing I would like to say is. Dont be hard on yourself. Stop thinking you did something wrong. You didnt, Life fucked you over. Not your fault.
       
    4. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Thanks for the reply and advice Chris.

      But from analyzing my situation I think hyperacusis is only maybe 30% of the problem.

      Hyperacusis is supposed to be an acute temporarily pain caused by sounds like children screaming, a fork against a plate, paper rustling etc.

      Is having increased pain and tinnitus when wearing hearing protection really a sign of hyperacusis?

      Is having increased pain and tinnitus when doing physical activity really a sign of hyperacusis?

      Is having ear pain, fullness in the ear, lingering or permanent different kind of pain in the ear IN COMPLETE SILENCE really a sign of hyperacusis?

      Is having burning, numbness, tingling sensations in the ear IN COMPLETE SILENCE really a sign of hyperacusis?

      Is having random tinnitus spikes with matching aching in the ear in IN COMPLETE SILENCE really a sign of hyperacusis?

      Is having random tinnitus worsening PERMANENTLY after sexual activity/orgasm (no sound) really a sign of hyperacusis?
      ---

      From my past experience with hyperacusis, none of the above is normal hyperacusis.

      Putting me in the "normal hyperacusis" mold is the easy thing to do - because the "chronic pain" I have is something no doctor can explain, and thus they do not want enter that territory!

      Do people here feel that what I have described in this message and in my first post really is "normal hyperacusis"?
       
    5. dan
      Chatty

      dan Member

      Tinnitus Since:
      06/2011
      If you only had your tinnitus left, could you go back to being normal? (no pain, mild H)
      Whats your tinnitus like?
       
    6. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012

      Hi Lesky,

      I can feel your pain through your writings and know that will be only scratching the surface.

      One thing that's come over clear to me though is that you are one hell of a fighter.

      I'm going to add my thoughts to try to help, I hope you wont find them patronising in any way as Im sure you've investigated a lot of things yourself.

      The first thing is that you need an expert Hearing Therapist who really knows their stuff to go through all this with you and answer all your questions. In the UK there are some very knowledgeable ones, though they may be few, are there any where you live?I dont mean just ENT I mean people who really dig in and understand T and H mechanisms and the functioning of the auditory pathway from ear to brain.
      You need that factual support from someone who knows how tinnitus and hyperacusis works. They will also know a way out for you. That way out may be slow going. You need someone like this to hold your hand through this process.

      The second thing is do you sense a psychological component to this? I know you've had noise that has caused trouble but do you think that's led to your thinking now being a factor in the problems you have? Focussing on the ears can make them hypersensitive. Someone did an experiment with me; got me to focus hard on the top of my index finger and feel it. I became very aware of that index finger and the tip of it started tingling and feeling uncomfortable. I actually couldnt stop thinking/feeling that finger for some time afterwards. Extreme focus can do that.

      Third, anxiety is known to exacerbate T and H. Do you take any anti-anxiety meds? It could be a good idea for you. I can recommend Klonopin (Clonazepam) as I've taken it myself.

      The last thing is about the ear pain. I have only had a little of this so am no expert. But, I do believe that the Tensor Tympani muscle in the inner ear can cause a lot of this pain. It gets stressed, it pulls tight, pulling your eardrum tight and thus causing pain and the fullness feeling. It can also go into spasm and I think that can cause the fluttering sensation some people describe. If you dont have any other 'proper' ear problems then this could be the cause.

      I think some of the questions you ask here could be normal Hyperacusis. Your auditory pathway is totally sensitised and on red-alert, reacting to everything.

      I hope you dont take offence to anything I've written, it comes from a place of trying to help.
       
    7. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Hi again.

      Yes, of course I have sought medical help. I have been in contact with my ENT/audologist on a regular basis.

      What does my doctor say about the ear pain?

      Well, not much. He can not say for sure whats the reason for my worsening condition other than that I obviously had a huge setback in October, 2011. He has seen me recover before and understands that there must be more "damage" now that I am unable to do it again the same way.

      So he has no solution for the "chronic ear pain".

      He has suggested that I try Electroconvulsive therapy and see if that can give relief from the chronic pain. I am very afraid of electric shocks and have not agreed to do it. As long as I can carry on without that, I am relieved. I have read about people getting tinnitus after ECT treatment that did not even have it before. Also some people got louder tinnitus from the electric shocks.

      He is suggesting this because his belief is that I am suffering more from diffuse pain from the auditory system, rather than "regular hyperacusis".

      Just to be sure I have had my heart checked in all possible ways and there is nothing to find there - all fine!

      For anxiety I have tried Atarax only because my doctor does not see Benzo as a long term solution and therefore do not want to prescribe it to me.

      I am also taking Mirtazapin as an antidepressant, which helps me against the worst sorrow.

      It seems everybody recommends different Benzo, if I should ask my doctor for Benzo, how do I know which one to pick?

      I see Benzo as something I would need only like every 5-10 days when I get real upset and freaked out.
       
    8. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      I use Clonazepam like that, once or twice a week. Its very calming and also reduces the T noise.
       
    9. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      I just had my first pain free 3-4 hours in 2 weeks time. Its overwhelming to suddenly feel like a new person. I know its just temporary, but you realize just how lucky every person is that have normal ears, to be able to live without constant pain is such a gift and its a shame its not fully appreciated until its too late.

      I can even write this message on my keyboard without hearing protection :) With the chronic pain switched off I am able to cope with sounds in a more normal way. Its the way it should be, the way I felt before the last noise trauma.

      I would so much like to pinpoint the exact reason for the chronic pain, If one knew for sure where it originated from, perhaps one could do something about it.

      Its weird it can vanish for some hours and just when you are dreaming of getting better, it comes back for no reason at all.

      I want to be awake tonight as long I can because I know when I wake up tomorrow the pain will be back!

      Have a nice weekend everyone!
       
    10. Karen
      Talkative

      Karen Manager Staff Benefactor Hall of Fame Ambassador

      Location:
      U.S.
      Tinnitus Since:
      05/2010
      Cause of Tinnitus:
      First time: Noise 2nd Time: Ototoxic drug
      Lesky -- I'm so glad you're experiencing some pain-free time! Let's hope it lasts all weekend for you. It looks like there is no rhyme or reason for you pain, but it certainly does make one appreciate what it must be like to have normal ears. I wish you a pain-free weekend!!!
       
    11. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Thanks for your concern Dan!

      If my pain was gone I would have no problems living a normal life (knock on wood). As you know I am spending the days in a silent room and my tinnitus are irritating but not devastating bad.

      Upon til 2007 tinnitus was JUST a sound for me.

      Now I mostly suffer from the tinnitus because its a physical piercing/cutting presence and not just noise. Along with pain and discomforting sensations all tinnitus sounds become more scary.

      I have around 5-6 different sounds in both my ears, some of the sounds are changing frequencies and loudness all the time which makes them hard to habituate. The volume is much louder in my left ear is because of the Michael Jacksons murder trial on radio , which l I listened to in october 2011.
       
    12. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Sorry for my late reply - thanks for your concern.

      I agree I would benefit from being in regular contact with a very skilled hearing therapist/audiologist/doctor.

      My current doctor is working very little since he has just become a parent. The seriousness of my situation does make it hard for me to travel - especially as there is no cure available via surgery etc. I have not been willing to sit in a car making symptoms worse for 5-6 hours to be able to see a better doctor. I am not able speak either, so its very hard to communicate, my doctor lets me use a portable computer to write on when I see him. I am not even comfortable with that because of traveling to the hospital takes time etc.

      Remember that as I have said before that my pain and tinnitus are both exacerbated by wearing hearing protection.

      And I am not referring to that I am being more aware of tinnitus after wearing hearing protection because of blocking out external sound. The tinnitus is in FACT increasing along with the pain when I wear hearing protection.

      This started after the Acoustic Shock Injury, as described below: http://www.dineenandwestcott.com.au/asi.php?fid=1

      In 2008 during new years I put on head phones to protect myself against fire crackers and rockets and stuff - and I had to wear them for 5 hours non-stop - I was in such pain I cried for the last 2 hours. It took 2-3 days for the pain and tinnitus to move down to its original level.

      This phenomenon disappeared as I got better in 2010, but then came back much worse in 2011, october after the radio trial incident and has since then only worsened in sync with the escalating chronic pain.
      ---
      I do not believe psychological components to play a big factor, if any at all. I have lived with ear pain since 2007 and have recovered 2 times since then before, and there was nothing psychological hindering me then.
      ---
      At last - regarding Tensor Tympani syndrome:

      People who have to describe it as
      tugging, thumping, fluttering and contracting of the ear drum. I do not have any of these symptoms, I never had them. My ENT has investigated this as well and come to the conclusion I do not suffer from this.

      I have emailed my doctor about Klonopin (Clonazepam) - to use temporarily. Thanks for the tips!

      I certainly did not take any offense from your post :)
       
    13. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Glad you didnt take offence Lesky. Hope you wont take offence to this post either :)

      I'd be amazed if you didnt have Tensor Tympani Syndrome (the TTTS in your audiologists link). Its a mechanism to protect from loud noises and with your fear of noise I cant see how this wouldnt be a factor. I myself get this awful full feeling and some pain from the Tensor Tympani. From Wikipedia "Following exposure to intolerable sounds, this contraction of the tensor tympani muscle tightens the ear drum, which can lead to the symptoms of ear pain/a fluttering sensation/a sensation of fullness in the ear (in the absence of any middle or inner ear pathology)."

      How did they establish you dont have TTTS?

      Do you have any ideas about what is it you have if its not Hyperacusis?

      Yes, I can heartily recommend Klonopin, if it wasnt for the build up of tolerance issue then I'd take it every night!
       
    14. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Louise: I am glad to be having this conversation with you. The problem is that to explain my theory on what is my problem I need you to understand what happened to me in 2007 and how it all collapsed in 2011.

      Its all about sound tolerance - I will first post a message I wrote about my sound tolerance in 2007, I only want you to read this - you do not have to comment it.

      ---

      In 2007, I wrote the following about my sound tolerance:


      Lost recuperation and deterioration of the ears sound tolerance second by second

      Hyperacusis (hypersensitivity to sounds) is a condition when certain sounds leads to temporarily pain in the ears. Common sounds are screaming children, porcelain noise, clattering coins etc.

      Under these circumstances the individual experiences pain under the duration of the sound.

      What is not as common in ”normal” hyperacusis is a deterioration of the ears sound tolerance to sounds second by second during an actual exposure of sounds.

      A few examples:

      Example 1 – An attempt to increase the pain threshold by TRT during 20 minutes.
      (20 minutes is just an example, please do not debate this)

      The hum in the apparatus is set at 30 db.

      Patient 1:

      The patient only experiences a slight discomfort during treatment, possibly feeling a bit weary in the end. After the end of the treatment everything feels normal.

      Consequences: None.

      Lesky:

      Initially, Lesky feels no discomfort due to the hum. After 2-3 minutes he is starting to feel discomfort in the ears. The discomfort is then continuously increasing and after 10 minutes the treatment is painful. After 15 minutes Lesky is in serious pain, crying and has to cancel the treatment.

      Lesky could easily cope with the sound in the beginning, but the ears sound tolerance to sounds were deteriorating as the treatment continued. In other words, sounds that were no problem in the beginning of the treatment were really painful before the treatment had to be canceled.

      Consequences:

      Leskys tinnitus has doubled during the session.

      Lesky has to spend 7-8 hours in bed in absolute silence before the ears has recovered slightly so that he can cope with at least sounds at very low db levels. It requires another 10-24 hours for the ears to recover to the same state as before the treatment.

      It should also be pointed out that Lesky during this time had pains in the ears of different kinds.


      Example 2 – Eight hours of work at a petrol station.

      Ordinary work at the checkout of a petrol station.

      Typical sounds at the site: Radio, fans, ventilation, conversation, clattering coins, engine sounds etc.

      ---
      Patient 1:

      The patient feels a bit nervous due to the sounds, but can at least not from the beginning feel any discomfort except from some stronger sounds, for example when someone throws a wrench in the tool box close to the counter. After half of the day the patients ears are starting to feel weary, and he solves this by using earplugs. It makes the job a bit harder, but does on the other hand give relief for the ears.

      After two hours of work the patient removes the earplugs and can happily conclude that the ears now feels normal again and he can work during the rest of the day without them.

      Consequences: The patient ears are a bit weary when he gets home, but after relaxing with a book for some hours everything is normal again.

      Lesky:

      Lesky also feels a bit nervous because of the sounds in the station but does not feel any discomfort except from some stronger sounds, for example when someone throws a wrench in the tool box close to the counter. After half of the day Leskys ears are starting to feel weary, and he TRIES to solve this by using earplugs. It makes the job a bit harder, but SHOULD on the other hand give relief for the ears.

      After two hours of there are still pains from the ears, but he still tried to remove the earplugs. He quickly realizes that this is not good since all sounds are now very painful. The rest of the day is really painful since the ears are now very sensitive to sounds. There is pain when the customers talk, when Lesky talks and all other sounds as well. Lesky has to take painkillers to be able to make the day.

      Consequences: Lesky has to spend the rest of the day, and night in bed with painkillers. Social life is nothing to think about. If he is lucky the next day will be about the same, otherwise he will have to call in sick. Leskys tinnitus is amplified by a great extent after such a day, and he is worried that it will be a permanent change to the worse.
      ---

      It was in this way I lost my job, studies, girlfriend, and ability to socialize.

      In other words is my resilience to sounds severely deteriorated. The natural shielding of sounds of normal ears is almost completely missing.

      When all defenses are down the brain signals strong pains even at very silent sounds. Even sounds that are hard to detect with a db meter is painful.

      Even a normal conversation is really painful. The same mechanism also seem to send out an array of sounds in the ears making the tinnitus much worse.

      Please remember that this was how I felt in 2007 - today it is much worse. But I wanted to read how I were coping and understanding things back then. You do not have to respond to this 2007 story, I will write a new one about how things were in 2011 when my ear collapsed completely. And after that I will come back with my theory on my current situation!
       
    15. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Go for it :)
       
    16. Fish
      Balanced

      Fish Member Benefactor

      Location:
      Poland
      Tinnitus Since:
      July 2012
      Hello Lesky,

      You mentioned that you had some pain-free time few days ago. How are you doing now and how was your weekend?

      P.S. Just saw your picture in the first post. I am glad to have met somebody who's hair is as messed up as mine :p
       
    17. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      The pain that was gone that evening for 4 hours was back in full force after 10 hours sleep. It can come and go like that. Only problem is that the pain free hours are becoming much less by each day since June, 2012. 2 months ago I had pain free hours every day. Now I only have had pain free hours once the last two weeks.

      The reason I created this thread was because I feel its a train-wreck going in the wrong direction - my time is running out, thats why I got on here so my relatives can come here and see what I was going through if my suffering will be too much for me to carry on. I have never experienced ear conditioning worsening BY ITSELF without reason before. (obviously there is a reason for it, but me and my doctor can not tell what it is)

      After a noise trauma, usually the situation become worse and then it becomes stable - and stays that way until you expose yourself to a new noise trauma. And you can habituate and gradually become used to the situation at hand. If its not getting worse, then you can accept it and move on! That is impossible when you are progressively getting worse on a weekly basis like I am now. Its just chaos, helplessness and the feeling of dying alive.

      The symptoms I am experiencing are slowly intensifying with each passing day! I would give anything to pinpoint the exact reason for the degradation.

      ---
      Glad you you know how to hair style ;)
       
    18. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      If its any consolation Lesky, mine is getting worse and I cant understand what Im doing to cause it. Tonight is the worst I've known it and I'm not just saying it. A new level of noise. Its just so terrifying.
       
    19. Chicken

      Chicken Member

      Tinnitus Since:
      October 2011
      i'm curious guys what does the sound make now and why do you think it's getting so much worse for no reason? is it a life style situation or how your t started to begin with?
       
    20. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      I dont know why its happening. Over the last two weeks its been changing type of noise. Its now a fast flowing electrical river sound. And it sort of ebbs & flows too. Its louder and sort of closer. I know its louder as I can hear it above things that I couldnt hear it above before.

      I havent exposed myself to noise. Maybe its the Mirtazapine. Its not linked to T but maybe I got unlucky.
       
    21. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      My pain going up and your tinnitus is going up. I really know how scared and frightened you must feel. I wish I could make your tinnitus stay the same, what a nightmare to to face everyday, Louise.

      How did you get tinnitus? Link me to some other post if you do not want to tell it again, I have not read about how you got tinnitus.
       
    22. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Thanks.

      It would take you a while to find out how I got it if you searched, I appear to have made over 400 posts! I really must stop talking.

      Last June I went to a local pub and there was a live rock band on. I went to the front and the music was far, far too loud but I stayed there. I knew it was too loud and have previously gone to the back of the room in there for that reason. This time I didnt. In addition to that for some of the time I hadnt realised I'd been stood next to a speaker on my left side. The next morning I woke up with a noise which has never gone away. But, it HAS changed and got worse and louder. At first it was a pure-tone and quiet, I couldnt hear it above my car when driving or the TV when watching. Now its this darting electrical sound that I can hear above the car and which ruins my Tv watching and everything else. How much further is it going to go? Why is it getting worse so quickly? I know no-one knows, just being rhetorical. Im sick to death of it and its only been 7 months. Seems a lifetime.
       
    23. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Well after hearing your story I am completely stunned your progressively getting worse tinnitus.

      I have had tinnitus since 1997 and I have never experienced progressively worsening of tinnitus without a reason. The closest I have come to that is the last weeks when my tinnitus in fact has moved up, but the reason for that is that my auditory system is in TERRIBLE shape.

      You have only been exposed to one sound trauma and that was the onset of your tinnitus. To have it so bad after only that is puzzling.

      I assume you have gotten all the medical opinions on it? Has somebody had an explanation to your progressively worsening tinnitus?

      I suspect many experts would say its of psychological nature and that the increased tinnitus could be reversed - please understand I am not of this opinion, I believe you 100% since I know how bad it can really get!

      As long as your getting worse all the time there is no habituation or relief, just more acute anxiety and panic.

      The sole comforting thought I have about my worsening situation is that at least I am not causing it, I am just taking each day as it comes and try to find something to be happy about even though its very hard.
       
    24. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Well its not quite true that I've only had that one noise exposure. I have a high frequency hearing loss 'notch' that I am assured will have been built up over the years (years of going to noisy discos etc when younger). This one night though was VERY loud and I was in it 1.5 - 2 hours. It was too much all at once and that combined with the existing (presumably) hearing loss did it.

      After the onset (9 weeks later) I went to the theatre not thinking it would be a problem as I'd been to the theatre loads before that and its not 'ear damaging' levels of noise. It changed the type of noise and made it worse though.

      Then I got caught out again a couple of months ago in a noisy restaurant, I'd had a fair amount to drink and so didnt realise how loud it was. It got worse after that and seems to have gone very volatile.

      I think its what they call 'Reactive T'. Reacts to noise.

      Yes, I've had a very good professional opinion and some other professional opinions and the increase in volume has been put down to anxiety as per Jastreboff model. What else can anyone say as the Jastreboff model is all we have. I am anxious about it though, very!!

      It seems normal again this morning so that's one thing.

      So fed up of it like everyone else on here :(
       
    25. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Louise:

      Well after reading you last message I find your situation slightly less puzzling, but that tinnitus is worsening by itself is something I always find STRANGE and RARE!

      The Jastreboff model is certainly a good source, but some things there are stated as FACT when its Jastreboffs own opinion, same goes for Dr.Hazell. One thing is that a person with tinnitus and hyperacusis is not more sensitive to new acoustic injurys than a normal person, which is clearly untrue.
       
    26. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Well yes, I would be the rare one wouldnt I?

      Yes, what anyone says about T is not proven for a fact is it I dont think? Still, the Jastreboff 'model' is all we have and it hasnt been contested since he wrote it. Its what the NHS here in the UK go with.

      I agree with you that I think an already damaged & sensitive auditory system has to be more vulnerable to new damage. I think that just seems like common sense. But, there's a difference between damage to the hearing (that is detectable via test) and T getting worse through noise which is more or less normal. The noise doesnt have to be at a hearing loss level for it to make T worse. None of the experts have any explanation for this other than its my anxiety. But it isnt.
       
    27. Markku
      Inspired

      Markku Director Staff Benefactor Hall of Fame Team Trobalt Team Tech Team Awareness Team Research

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      Lesky,

      This is absolutely a riveting story.

      Interesting that it isn't TTS, but I guess it makes sense if you haven't had any of those symptoms.

      Have you yet tried/started Clonazepam? What were the effects?

      I would think that some ear expert/researcher/such would be interested in your case and trying to pinpoint the cause.

      I have no words of solace for you really. It must be horrible to live with constant ear pain. Even short period of times with ear pain is very excruciating, at least based on my experience.

      Argh. I'd myself want some nanorobot with a little camera to go in my ear and check everything. Every hair cell and whatnot. Speaking of myself here, but I'm still left wondering why ear syringing caused my tinnitus. It wasn't loud, noise couldn't be the reason.

      Oh well, my situation seems so miniscule compared to Lesky's and Louise's. Wish I could help both of you somehow...
       
    28. Louise

      Louise Member Benefactor

      Location:
      Yorkshire, UK
      Tinnitus Since:
      29/06/2012
      Thanks Markku.

      Clonazepam takes mine down but, its made my existing eye floaters worse. I cant believe it.
       
    29. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      Hi Markku.

      Nice to interact with you a bit :)

      For the TTS I will quote a doctor:

      Regarding this possible being a way to explain my chronic pain.

      I do not expose myself to ANY SOUNDS, that means my stapedial middle ear muscle will not contract itself during loud sounds because there are no loud sounds.

      And it certainly will not contract itself in FEAR of sounds since there is no sound coming.

      I am sitting completely relaxed in front of my computer in absolute silence.

      That means we can rule out tensor tympani and stapedial reflexes being the primary or sole reason for my ear pain in silence! Of course its also correct I do not have the other sympoms like fluttering, thumping, tugging or anything like that.
      ---
      Yes, I am sure some researcher out there would be interested in studying me - the problem is that I am in such bad state all research and even talking would make my situation worse. Its a nightmare really, I do not have words to describe it. This means I would not agree to be a test pilot unless there is very strong reason to believe I could be cured or have a great reduction of my symptoms. But of course I also want so badly to know WHY , WHAT and WHERE the cause is!

      Imagine having ear infection pain all the time and that sound makes it worse, something like that.

      Whats ear syringing Markku? I have never heard about it!
       
    30. Lesky

      Lesky Member

      Tinnitus Since:
      12/1997
      My doctor point blank denied my clonazepam (Klonopin) request. He said it was one of the most highly addicting benzos available and only gave temporarily relief.

      I said I was only going to take it maybe once a week or when I am really stressed/freaked out with extremly high anxiety. Sort of when I think about getting to the highway and jumping in front of a big trucker.

      Do you find it unreasonable for me to request benzo in my situation?
       

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