20 Years of Tinnitus and Counting

[Makrohn]

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!

 

[Samir]

Welcome to the forum!

Tinnitus is really a difficult condition to live with, I don't think hearing loss alone comes anywhere near. Some people have hearing loss but don't have tinnitus. But very often, it is closely associated with hearing loss.

The situation you describe with the firecracker is the most likely cause of your tinnitus, I am sure of it. The easiest way to induce tinnitus is by exposing a person to a sudden, very loud sound, preferably impulse or continuous sound wave. This is what happened to me in fact. Otherwise I have very good hearing for my age, nearly normal on both ears. But the left ear is more damaged because of acoustic trauma.

Also, you describe being exposed at age 15 and getting tinnitus at age 16. This is also something I can relate to. It took me about 12 months to develop tonal tinnitus. I have seen at least one other member on the forum who had the same experience. So it may take about one year to develop tinnitus. At least in case of acoustic trauma.

Many of the other symptoms and experiences you describe are common among other people with tinnitus.

Looking forward, we should be able to tell soon enough if restoring hair cells and synapses of the inner ear can suppress tinnitus. There is a lot of motivation in the pharma industry now to find a treatment for hearing loss. People are living longer, this planet is getting crowded, and it's becoming more and more noisy by every minute. There are too many venues you can go to now and hurt your ears and possibly your brain. Not to mention all the personal entertainment systems that you carry on you at home, to school, to work, and so on. It's a great burden for the economy of any country to have people stay off work and seek early retirement and disability because of hearing loss, tinnitus, hyperacusis or Meniere's disease.

A number of us here on Tinnitus Talk are trying to change things for the better. We try to reach out to researchers, collaborate and push things forward. It is greatly appreciated by the scientific community, and we have now been made associate partner of the ESIT - European School on Interdisciplinary Tinnitus Research. But our numbers are diminishing small relative to the size of this community, and to the global tinnitus community. So we call on more people to get involved. Doing even the smallest of task could mean a lot if we all help out.

I can't promise you a cure in the nearest future. But there is a lot of momentum now, much more than you may realize. The interest for tinnitus in the scientific community has been on a steady rise for the past 20 years. The same amount of time you have had tinnitus. There are a number of obstacles that hinder progress in this field of research, but I think the biggest one might be the lack of objective measurement of tinnitus in patients. But even that might change very soon. We need more funding in tinnitus research. That is probably the second biggest obstacle. Even that is changing! Slowly but steady.

So there is a lot of reason to be optimistic. Tinnitus has been plaguing mankind for more than 4500 years according to some records. That's far too long! We might as well be the first generation to witness a final and total relieve from tinnitus.

Again, welcome to the forum! Feel free to explore on your own and engage in the discussions.

 

[Makrohn]

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

 

[Fabrikat]

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.

 

[Makrohn]

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.