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From Living Hell to Living Well – Frode’s Tinnitus Success Story

1. Hi, tell us a bit about your condition. How long have you had tinnitus? What symptoms have you been getting? Is the sound you hear there all the time, or is it intermittent?

Well, my tinnitus arrived on the 13th of November, 2012. Prior to that, I had a month or two of a very low, almost inaudibly high-pitched noise in my left air. But on that particular day in November all hell broke loose. I was at work, sitting at my desk. Then out of the blue the fire alarm suddenly started to ring. But it wasn't the fire alarm. It was a sound in my head. Since then it has been a permanent sound and a trusty companion.

As for the pitch and the volume; well it is of the ever-changing kind. Some days are «good ear days» ( lower volume, perceived lower pitch), other days are «bad ear days» ( banshee scream from hell combined with the sound of a boiling tea kettle gone mad).

2. How did you actually develop tinnitus in the first place? Has anything in particular triggered it? Can you tell (or guess) what the underlying cause is?

I just came out of the blue. No exposure to loud sounds or anything like that. There was absolutely nothing to explain why this noise suddenly appeared.

3. How did it use to affect your day-to-day life when it started? What impact has it had on you in the past?

Like most tinnitus-sufferers I lived through hell the first six to eight months. Suicidal thoughts, constant «this-is-the-end-I'll-never-experience-happiness-or-the-joys-of-life-again» -thinking. The sound of my T was all-consuming. It was all I ever thought of, every minute of every day for the best part of two years.

4. Have you had somebody to diagnose it? Have you been to see a GP, audiologist, or any traditional health care providers about it? What treatment did they offer?

Yes. My GP was certain it was a Eustachian tube dysfunction and gave me medicine for that. When this didn't help at all I was sent to an ENT who diagnosed me with tinnitus. I was then sent to an audiologist who supported me with tinnitus-maskers and sessions of cognitive behavioral therapy.

5. Have you tried any alternative treatments, dietary/lifestyle changes, or treatments not offered by traditional health care providers? Have you had any success with of them?

I tried everything under the sun during the first year: no coffee, no alcohol, vitamins, homeopathy, osteopathy, sound therapy and so on. You name them, I have tried them all.
Nothing makes any difference to the tinnitus at all. Absolutely nothing.

6. Have you sought counseling or therapy? In particular, have you looked into sound therapy, tinnitus retraining therapy, or cognitive behavioral therapy? Did any of them help?

Been there, done that. And nope. It did nothing for me. The only thing that did give me some relief was the success stories on the Tinnitus Support Message Board and postings on the forum.

7. How did you eventually start to cope with it? Do you manage it better now than when it first started? What impact does tinnitus have on you today?

Just a few weeks before Christmas 2014 I noticed that I spent less time thinking about my T and more time doing things I enjoyed doing prior to T. From January 2015 to June 2015 this behavior on my part (or should I say: my brain's part) became more and more frequent. During a trip to Mallorca this summer I noticed that I'd hardly thought about my T at all during the vacation. This was a turning point. Habituation had finally started and the T became less of an issue since then. I didn't «do» anything to make this happen. It was just a natural part of the healing process that is called neuroplasticity ( how entire brain structures, and the brain itself can change from experience). In other words: I stopped being afraid of the noise.

8. These days, what do you do to manage your tinnitus? What do you do when it gets particularly bad?

I don't do anything, because I now strongly believe that there is nothing one can do. You just have to be patient and wait it out. The brain will sort this thing out for itself and the fear and the anxiety will disappear. I still get «bad ear days», but when this happens I usually just shrug and say «F@#% you, T! You cannot stop me from living my life». Then I go on with whatever I was doing.

9. Do you believe there's a single “silver bullet” cure for tinnitus? Do you believe there will ever be one?

Since there is no common cause for tinnitus ( some seem to get it due to noise exposure like industrial workers and musicians, others again - like me - get it for no external reason at all) I think it will take a long time before a universal «cure» is found.

10. Anything else you’d like to tell us that we might have left out?

I have tried it all - absolutely everything. After three years, I have found out that there is nothing out there that has any effect on my T at all. Even for better or worse. There is no external sound, no matter how loud they are that makes my T worse. There is nothing I that I eat or drink that has any effect on my T either.
Habituation ( time + patience ) is as far as I'm concerned the only remedy. Yes, you may have to go hell and back, but you'll get there too.