20 Years of Tinnitus and Counting

Hi everyone!

My name is Marius, and I´m a 37 year old sales manager from Norway (Europe).
If my written english is poor, I apologise, but hopefully you will understand most of it.

My story; I am born with an inherited hearing loss called "cookie bite" hearing loss and have been using hearing aids since I was about 28 years old.
At the age of 15 a firecracker made permanent damage to my right ear, and from the age of 16 I have had tinnitus every single day in both ears. In many years the tinnitus was stable in pitch and tone except for some regularly episodes where the volume sky rocketed for a duration of some hours. This still happens from time to time, and I have no clue in why or how this is triggered.

About 4 years ago, my tinnitus changed in one ear (the right) and a new tone came on top of the one I had before. The tone I had was like a breeze with a high pitch, the new tone was a stable pure tone like the one you can hear from electrical equipment. And now, the last year, another tone has been added, but this tone is not chronic all though I hear it every day. The tone seems to react to outer sound, and it is almost like it tries to match the volume of outer sounds. The tone is also some what pulsating, but at the same time not, as it does not follow my pulse.

I hope to hear from other tinnitus sufferers around the world to exchange techniques and treatments as they are developed and available.

I wish all of you the best, and I hope we all can have a cure really soon!

 

First off all, thank you for the warm and very informative welcome to the forum.

All though I have had T for 20 years, I have done very few things to try to calm it or "heal" it.
I have been to on course where we mostly got information on how T occurs and some theories on how it can be calmed. On this course we learned some simple relaxation exercises we could do when T bothered us.

I have read some of the posts in this forum, and of course the information I wanted first was all the information about how others are dealing with their T and what solutions is currently available. Everything from magnesium, to drugs and foods to avoid is all interesting, but it certainly is a jungle out there. And, what works for some might not work for others, so I am expecting a lot of hit and miss.

I have not been aware of the ongoing research regarding T, but I have also been thinking that I never or seldom hear about any progress in this field. Since I use hearing aids, I see my doctor on a regularly basis, but any progress or research in finding the cure for T has never been mentioned. When reading this forum, I do find hope in some of the threads, and I am very happy to hear about ESIT, and I would gladly contribute in any way I can. But, at the same time, I find it difficult to know what research is real and what is "fake news" so to speak. I think it is great that people are finding some solutions on how to live with their T, but at this moment it is too much of a jungle for me, and too many alternatives. Is there a way for us to make that part of this more clear and easier to navigate through?
There are doubtlessly a huge amount of people all over the world doing 'research' on their own, and if there was a way to make all this 'research' available and trustworthy maybe it also could contribute to the ongoing research at ESIT.

Also, since there are different laws and regulations all over the world, I am sure we are missing out on important information which could help or benefit any research being done. Just look at cancer, many methods of curing is not available in every country etc. If there were a global association with contact persons in many different countries, everything could be channeled to the same head office. I for sure would gladly volunteer for such a position of it would mean we could gather all research, personal and scientific in one place.

Thank you for the job you are doing, at the moment with this forum, I am clinging to the hope that a cure will be available in not too distant future. I started out with mild T and now, I am heading towards severe T and I am not sure how I will cope with that.

Marius

 

Hi @Makrohn,
Welcome to TT! Many people who use hearing aids report some relief from tinnitus due to increased stimulation of lost frequencies. I wonder if you experience any relief with your aids in this regard. Also, if perhaps you don't, I wonder if your tinnitus is more of a high pitched variety. If so, have you experimented with any of the newer aids that are capable of amplifying higher frequencies? One brand can reach up to 12 kHz. Maybe this may be of benefit to you.

 

Hello @Fabrikat

Since I got my T when I were 16 and hearing aids when I were 28, I did at that point get some relief, yes.
But, as time has gone and my hearing has gotten worse, the relief did not last, I am sad to say.

It is also worth mentioning that my T has changed since then and I also do have a very small suffering from hyperacusis especially in my right ear (the most damaged one).

The hearing aids I am wearing today, is Phonak Virto Q90 and they are about 3 or 4 years old I believe.
I do not know for sure regarding the available frequencies, but it does have 20 channels of adjustment according to phonak.com I am in the process of trying some new aids since my hearing has gotten worse, but my type of loss makes it difficult to adjust the aids "perfect" and I have to try several types and brands over a long periode of time.
I also feel that my T has gotten more attention over the last two years or so, and this is probably due to my hearing getting worse by natural reasons. I am very aware of loud noises and try to protect my ears as much as I can even though I miss going to concerts etc.