Long Time Tinnitus Sufferer, Now It's Become Unbearable

Discussion in 'Introduce Yourself' started by Jugs, Jul 21, 2019.

    1. Jugs

      Jugs Member

      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Unknown
      Hi, I’m not much for writing as I’m hopeless at spelling and grammar.

      So I normally keep things short and to the point. I have had tinnitus for over 20 years since my early 20s and I’m now in my late 40s. It’s not given me too much trouble for most of the time but it’s always been there.

      But now it’s nearly unbearable. It’s so loud and is waking me up every night for the last 3 months. It’s so bad but I’m still trying to manage it.

      I don’t tell anyone about it, I try so hard not to complain but my moods are bad, I now have a very short temper. I just hope it settles.

      I’m very worried what’s next.
       
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    2. BrStan@

      BrStan@ Member

      Location:
      London
      Tinnitus Since:
      1999
      Cause of Tinnitus:
      Acoustic trauma
      Hi Jugs, I am also long time sufferer like you. Tinnitus since 1999. The same as you I was living happily with it. But 4 years ago after noise exposure (combination of jack hammer and police siren) my tinnitus increased to a level I did not know that tinnitus can increase to. It was painfully loud, reactive to noise and unmaskable and I also have hearing loss.

      My tinnitus is very loud. Sometimes I can't hear what people are saying because of it. I can hear it over everything all the time. I was thinking this is the end. I must commit suicide. But as my tinnitus was previously spiking and always fading after that I had this little hope that it may get better again.

      So I have decided to stay alive and give it a chance. I was thinking "what if it gets better after all and if I kill myself now, it could be for nothing".

      First month was hell, second the same, third the same, after my 6th month I started to feel that there is a hope. I did not take any medication. Just Magnesium. I found it helpful. After 9 months I had already my life back. The tinnitus again was under control and I was so happy that I did not kill myself. I could still hear it but it was again very mild, I just couldn't believe it. It somehow happened gradually without even me realising that I am winning. I could still have some bad days from time to time but I did not care, I knew a good days are coming. It was a long and exhausting game.

      The strategy that helped me back then was take 1 day at a time, just 1. When the day passes, be happy that you have done it and that will give you a confidence that you can take tomorrow. I also suffer from sever anxiety and depression and I am always depressed and anxious. But I don't take medication for either, I just let them be. If I need to worry then I worry, if I need to be depressed, then let it be.

      So if a person like me, mentally broken, can beat tinnitus, it means everyone can.

      I know how you feel. I know every thought that is passing through your mind about tinnitus. I know the severe pain you are experiencing. I also know that you want to end it all as you don't believe this can get better and you can not handle it anymore.

      But take it from me my dear friend, take it from me, it will get better and you will be your old self again. The only thing you need to do is just give it a time. How long time? This I don't know as we are all so different, you can recover quickly or it may take a while. The important thing is that recovery or habituation, call it whatever you like, will occur for you. I know. I was there 4 years ago and unfortunately due to life circumstances I am now there again.

      I had to do MRI 4 weeks ago with crappy hearing protection and my ears got damaged again. if you cannot sleep, ask your GP, they can help you with that. And one more thing, protect your ears from loud noise or avoid it altogether if possible.

      I would like to know what made your tinnitus worse?
       
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    3. Forsberg
      Depressed

      Forsberg Member

      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Unknown
      I usually say what I think. Many may think this is not in good taste. My tinnitus is fresh because is about 3 weeks so I can't compare to your suffering. But I wouldn't last as long as you did. I admire your desire to live with this horrible illness.
      But sometimes if something is not bearable at all, then what can we do? If somebody would say to us that in 2025 there will be cure for tinnitus than there is an anchor to catch and try. But there is literally nothing now and I bet within 5-10 years too.
      In my opinion life is great as long as you enjoy it. It is hardly to do if you are seriously ill - and tinnitus is such illness.
       
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    4. carlover
      English

      carlover Member Benefactor

      Location:
      London
      Tinnitus Since:
      1986
      Hello mate how about getting a hearing test ...high frequency loss causes T you may be like me I reckon I can hear fine but ive got High Freq hearing loss and hearing aids stop me going mad ...it cuts it out around over half well over half really because it stops it getting louder and louder which after a while the pain and pressure kicks in..At night I turn the volume up and wear them in bed and for some odd reason even in the silence it halves the noise maybe more than half it makes the unbearable bearable
       
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    5. Mathieulh
      No Mood

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      - First of all, there are promising cures/treatments in the making that involve cochlear cell regeneration undergoing clinical trials and roughly, realistically, 10 to 15 years away, there is also neuromodulation based therapy available since this year (look up "Lenire") which may/can alleviate your symptoms.

      - Second of all, time is always on your side, 1. through the habituation process (which over 90% of sufferers eventually undertake, though since it's a physiological process (and not a psychological one, as most people believe), this takes time (usually 6 to 18 months) and because it is tied to brain plasticity, some people cannot habituate, they are a minority though so the odds are in your favour), habituation isn't a cure, but it allows you to lead a normal life again.

      2. Through healing, while a lot of the sustained damage from a trauma is irreversible (specifically cell death), a large part of it, isn't, and assuming you take care of your ears soon after the onset, they can (for the most part), given time, recover. This does not happen overnight and the ears are one of the slowest organs to heal (though realistically, most organs take time to heal), this means that tinnitus can eventually fade IF you protect your ears, avoid headphones and avoid loud noise exposure during the months following the trauma, recovery can take up to two years (I did say it is slow) and is very gradual (it very slowly fades as time goes by, until you eventually notice it isn't as loud or persistent as it was).

      When I first had my tinnitus, it was at a severe debilitating level, covering everything up to 60+dB and disturbing enough that I couldn't think or read properly, (yes, tinnitus can be that loud, debilitating and intrusive), this level of tinnitus lasted for about 23 days, until it got to moderate and it only got mild a couple of days ago, 2 months after the onset, it is currently at 1/10 since last night, it was at 8/10 when it first started), of course I did everything to possibly increase and improve recovery, from taking large doses of prednisone for a month, to going to 7 mHBOT sessions, which I'd like to think helped somewhat recover faster, but I don't know for sure if it had any effect, what I know did, is that I kept my ears protected from loud noises everytime I was outside my home or workplace, this is paramount to a proper recovery and should be done up to 4 months, if not 6, after a noise trauma, loud noise exposure after trauma will only delay recovery further, if not impair it as your damaged ear cells would be more prone to permanent damage (as they have yet to heal).

      Just like when you break a bone, you can't just carelessly move it around if you want it to mend, this is why we use casts, you can bring that same reasoning to your ears, while you can't use casts on these, you can use noise protections and let your auditory nerve and cochlear stereocilia heal, just like for bones, this is a lengthy process that does not happen overnight, and the more you stress it, the less likely you are going to get a proper recovery. The body takes weeks to fully heal scar tissues in a young and healthy individual, that should be telling.

      I do believe having a positive mindset helps through the recovery, my tinnitus went from severe to mild a few days after I changed my mindset from being suicidal to being positive, is it a coincidence? Perhaps, but I'd like to think it isn't. Either way, negativity is not going to help you or anyone else, it will also block the habituation process (so long as the noise is perceived as a threat, it will be processed through the amygdala rather than the nucleus accumbens and will literally block habituation as the amygdala does not have receptors that deregulates, which means it can't shrink, which means it will always perceive the sound as loud/threatening, while the nucleus accumbens handles repetitive, (mostly annoying), background noises, so the way you perceive the noise is actually important to recovery, assuming it does not fade or entirely fade on its own, in which case, you will want to eventually habituate, I can't stress enough that this process is physiological and cannot be rushed.
       
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    6. Mathieulh
      No Mood

      Mathieulh Member Benefactor

      Location:
      Paris, France
      Tinnitus Since:
      05/24/2019
      Cause of Tinnitus:
      Chronic headphones use and acute noise induced trauma.
      Unfortunately in France, they only test up to 8kHz and there is no such thing as a high frequency hearing test :/ (this would be quite evocative of the level of knowledge (or lack thereof) ENTs (which here also act as audiologists) have in regard to tinnitus).

      My tinnitus is at 14kHz (well, my base noise is, I have 2 but they are at the same frequency range, although right now it is so weak that I couldn't tell what frequency it is unless it hadn't been raging at very loud levels for days and the frequency didn't happen to never actually change, I can still hear it right now, but it is quite faint.), of course since tests do not cover that frequency, I can't tell if I have had hearing loss there, anything below 8kHz is normal as far as my hearing is concerned, with mild, but within the norm, hearing loss that's measurable only through bone conduction in my left ear (where I have my tinnitus) at around 2-3kHz.

      Obviously I have no trouble recognizing speeches whatsoever, and no hearing impairments of any kind, other than the extra noise from the tinnitus itself, the ear acts fine, even though I know for a fact my tinnitus is noise induced.
       
    7. AUTHOR
      AUTHOR
      Jugs

      Jugs Member

      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Unknown
       
    8. AUTHOR
      AUTHOR
      Jugs

      Jugs Member

      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Unknown
       
    9. AUTHOR
      AUTHOR
      Jugs

      Jugs Member

      Tinnitus Since:
      1994
      Cause of Tinnitus:
      Unknown
      Hi BrStan, thanks for replying. I believe loud noise has made my tinnitus worse but I also have Sinus issues that I’m sure play a part. Sleep is becoming an ongoing problem lately and I will go to the GP soon, I think there is no doctors out there that understand tinnitus anyway.
       
    10. Forsberg
      Depressed

      Forsberg Member

      Tinnitus Since:
      07/2019
      Cause of Tinnitus:
      Unknown
      Thank you for your broad response. The Lenire project seems for me very interesting but I do not believe in the the high efficacy of such devices. Hopefully I am wrong and my lack of belief is a result of lack of competence. But I will mention this to my ENT doc in the Netherlands. I have a visit next week.
      It is enormously depressing to know how the silence sounded like and comparing it to the current state of matters. I cannot believe that 1 month ago I lied on my bed just thinking about various things, enjoying silence (I liked to lie down on the bed in my house in complete silence to relax). Now when I do that I hear only a high pitch tone. When you remind yourself how it was just a moment ago - 1 month is not too long ago - then you realize that it's never gonna be again like it was. Fuck that if I was 60-70 years old. Then I would live statistically 10 years and I could live with this. But I seriously can't imagine living with such thing for the next 40 years which statistically I have ahead of me. This is not scream for help because nobody can help with such illness. The hair cells are dead and that's the end.

      Sometimes I would like to scream at someone, sue somebody but I cannot. If I had walked on the railway and train would have cut my legs. My fault, I can blame myself. But in case of the tinnitus nobody made it to me, I can't be even mad at myself because I didn't attend to the concerts, parties. I didn't listen to the loud music. Who can I blame? The God? Who is faulty here? I have a lot of rage but against whom exactly is unknown because nobody is to blame, it seems. Maybe the God.
      I would be much more relieved if I was multimillionaire. But I am not. That means that it is great chance I will have enormous problems to focus in my work, which surely make impact of the situation because if you can't do your work - and surely hearing constant noise won't help - you are going to be fired. That means no money, stress, more crappy situation. This illness makes you crippled, so I cannot see a possible future as "good life".
      Cheers.
       
    11. Rafalek73

      Rafalek73 Member

      Location:
      Poland
      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Hearing loss
      @BrStan@ Your words have given me some faith in a better tomorrow, thank you. I have had noises since November 2018 with a significant deterioration since February 2019. I also have a hearing loss, but if it wasn't for tinnitus, I probably wouldn't even notice it. I was born with a disability, but that's nothing compared to tinnitus. I can hear them all the time. I was also a person who always had everything planned. He is not currently planning to do so. He lives from day to day. I am extremely afraid of the future. I will get weaker and weaker and I won't even be able to rest in peace.
       
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    12. Autumnly
      Wishful

      Autumnly Member Podcast Patron Benefactor Hall of Fame Advocate

      Location:
      Germany
      Tinnitus Since:
      July/August 2013
      Cause of Tinnitus:
      Noise induced
      Not sure if you've already heard of this Irish company called Neuromod, but they might be releasing their new device called Lenire this year in Germany (they've already launched it in Dublin). Perhaps you might be able to travel to Ireland or Germany to test it out? However, there's no guarantee that it's going to work.
      But I'm also looking forward to the device by the University of Michigan and the other device by the University of Minnesota.
       
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    13. Rafalek73

      Rafalek73 Member

      Location:
      Poland
      Tinnitus Since:
      11/2018
      Cause of Tinnitus:
      Hearing loss
      Everything you write about, I also read about it, and I'm interested in it.
       
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    14. Nana99

      Nana99 Member

      Tinnitus Since:
      2005
      Know you're not alone. Millions of us deal w this. Mine starts when I wake up and anxiety follows quickly. Today was the worst day in 3 years. Fortunately I have Xanax which calms the anxiety and lessens the rest ringing or at least my thinking about it. This site is reassuring to me.
       
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