New from NZ, 22 Years with Tinnitus and Hyperacusis. How I Cope(d).

Discussion in 'Introduce Yourself' started by Joboy, Jul 26, 2016.

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    1. Joboy

      Joboy Member

      Tinnitus Since:
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      Hi all,

      I have had T now for 22 years. It started in 1994 after using an antibiotic called erythromycin. After two days on it I developed a loud ringing in my ears. I stopped taking it and the sound went away. I called my doctor and told him and he assured me it was absolutely not the erythromycin and that I needed to continue taking it to get rid of the infection I had. I did and the tinnitus started again and never went away. Seven years later I had a nervous breakdown and was on Xanax at the time to try and cope with the intense anxiety. The Xanax did not worsen the T but I made the mistake of stopping them suddenly. My hearing became distorted, everything sounded like it was mixed with static noise like an off station radio. Then sound started to hurt my hearing and everything was too loud. This was diagnosed as hyperaccussis. I still have that to this day. If I can give any advice, coping methods etc from my personal journey which may assist anybody it is the following..

      Firstly, trust your body. If you start a med and suddenly get tinnitus consider stopping the med and talking to your doctor about an alternative unless stopping could prove worse than getting T. This didn't work for me but that was 22 years ago and other alternatives are available now. If I had insisted on a different antibiotic possibly I would be T free.

      When I first got T I was angry with my doctor and angry with myself for not listening to my body when it first started and then stopped and I was stupid enough to start taking it again. Being upset is natural as is getting panicked but it really doesn't help. The faster you can try to be indifferent to it the easier it gets. I found when it was really bad at first I used to think to myself "if I hear the T it makes me smile" and I would force myself to smile. At first it was totally fake but after a while it actually started to take hold in the subconscious and when my mind focused on the T I smiled and felt that little bit better. It helped me to become indifferent to it which helped lessen the anxiety about it. Win Win.

      For me Lorazepam works well. Some people say benzos are what caused their T but I had taken Xanax for anxiety for a number of years without problem in the late 80s early 90s. All was fine T wise until the erythromycin. Again it was the sudden stopping of Xanax after the nervous breakdown in 2001 without tapering off which I feel bought on the hyperaccussis.

      I still have anxiety but cope without meds most of the time and still have T and hyperaccussis. I take half a Lorazepam when needed. It definitely eases the anxiety and because of that my T levels seem to decrease. It has worked for me and improves things for me.

      I found forums in the nineties about T and so many people were angry and saw T as an enemy which is an easy thing to do. I did, at first but that is a major mistake imo.

      The more you focus on something the more real it becomes. Especially such a personal thing like T. The more angry you are, the more you want to fight it etc the more you focus on it, the more real it becomes and around you go again. Breathe, relax as much as possible and realise that life goes on whether the T goes or not. I am not saying it is easy but the more you can stop resisting it and go about looking at options in the most calm state you can muster the better it is for you. I mentioned this on said forums in the 90s and was amazed by some ppls hostile reaction to the ideas mentioned above. They basically felt that life had been cruel to them and they were ready to fight until the bitter end with all the anger and venom they could. Good luck to you if that is the way you choose to go. Do your research, find out what helps you cope until hopefully the T either goes or is less intrusive as it is with me. it is an inner game in more than one way :)

      I found that loud noise increased the level of the T and had to be careful what environmental noise I subjected myself to. The quieter I could keep it within reason the lower the T noise was.

      From here on is mostly my coping mechanisms for hyperaccusis.
      When the hyperaccus started T looked like nothing. T was like a mosquito bite and H was like being shot in the face. It was the most shocking, dramatic thing that had happened in my life. I had had a severe motor accident in the 70s and almost died. Multiple broken limbs etc, long recovery yet not even that prepared me for hyperaccusis. My whole world changed and is still to this day but you can cope. After having it diagnosed and told I just had to live with it and felt like giving up. I have to be honest. But I didn't and here I am 15 years later living with both T and H (sorry but I am getting tired of writing it in full).

      Fortunately, had and still have a very understanding family who have helped me immensely. If you don't have support try and find some like here on TT but not to the point where you are constantly focusing on it :) see above. I had no alternative but to use earplugs. Audiologists dont like them because the retrain the ear to normal sound. That may be true but they wouldn't say that if they experienced what I went through. My H was so bad that all outside noise was extremely painful and I was unable to tolerate the world without earplugs. I simply couldn't function. With earplugs I could still function to some degree. At its worst moments laying in bed at night just the sound of swallowing saliva caused pain and panic. I recovered from that and so can you. Don't be afraid to wear earplugs if you cant avoid it, just wean yourself off as you can. Keeping on jarring an already over stressed nervous system will not be to your advantage. I still wear earplugs when I go out but now they are only cutting out maybe 10% of the outside world instead of the 90% in the beginning. There are many different types of earplugs out ther if you have to go that way. I haven't kept up to date with T or H for many years now so maybe there are alternatives. This is how I coped.

      Gradually over the years I retrained my ears with VERY soft music for short periods of time. I found quite instrumental music was best. No drumming, electric guitars etc. Just gentle soothing music worked for me. gradually I have been able to tolerate louder music but still not what a normal ear can handle but that is fine for me.

      Once again low dose lorazepam as needed has been a major benefit for me.

      Having H is a very scary experience. For me much more than T and that was scary. So the ides of having dental work was one of the bravest things I have ever done and before H going to the dentist didnt concern me at all. I face my dentist used to give me a mirror so I could watch. But after H it was a different world or so I thought. Good news is I have had 2 root canals and a number of fillings and some teeth removed and it didn't worsen my T or H in any way. Thank god.

      The methos I use is simple. After telling the dentist what the issue is you tell them you need to use your fingers in your ears as needed. I keep mine in place and for some of the noises I block my ears a bit more and others of a more vibratory nature I release them somewhat. Its is crude bit works well and is better than just putting earplugs in as some noises if dental work are magnified with blocked ears. If you have to have dental work hopefully this method will work for you. As I said it never worsened either the T or H for me. I wish someone would have told me this but there I was the guinea pig :)

      If any of this is useful in any way I am very happy. Sorry for the long post :)

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    2. Path Maker

      Path Maker Member Benefactor

      Tinnitus Since:
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      @Joboy Thank you for posting all this. It is very helpful and will help others!
    3. XtonyX

      XtonyX Member

      Tinnitus Since:
      Cause of Tinnitus:
      Thank you for taking the time to share so much of your experience.

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