A Valid Reason Why Habituation Should Not Be Glorified

First of all I am for habituation as a coping mechanism but not as an end goal, so in no sense I am saying not to habituate. Even pay for TRT if you think it's the right idea.

The scientist, researchers, investors ect everyone that plays a role in funding and treating hearing loss, tinnitus and hyperacusis will assume that our problems are minor and that we just learn to live with it. That may be the case for some of you but I am certain others are devastated and want REAL HELP, not filling Jasterboff's wallet.

If we keep demanding and complaining about how much this ruins our lives. They will listen and we will speed up the process for a cure. If we glorify habituation we will be ignored. Right now we can only hope that Susan Shore's device is successful and that Frequency Therapeutics cochlear hair cell regeneration program hits the market. That is what gets me excited and gives me the will power to stay alive. We need to be talking about research more and show more interest and appreciation for the scientist that are trying to solve our problems. That is what Tinnitus Talk's goal should be in my opinion.


Now let's talk about habituation, I have for the most part already habituated to my tinnitus which is an electronic fog noise surrounding my head with a "EEEEEEEEE" in my right ear. I also have high frequency hearing loss in my right ear and reactive hyperacusis in both ears which ruins music. This has ruined my life and I will never learn to live with it because my life was already low quality before and this was the final insult I can take. The only thing that gives me hope is science, being told to get use to it is what is making me heavily agitated and depressed it seems for some people here just the opposite is true.

Feel free to disagree with everything I said I just want to see REAL HELP.

 

I believe that is what Steve and Markku are doing Contrast. Spending their own money and time to attend the next TRI conference to talk with researchers and share different information regarding tinnitus.

 

When, what?

Never mind. Found it elswhere on the forum.

 

I am all for finding a cure for tinnitus but one must be realistic. I once read a newspaper article that mentioned, 19 out of 20 medical condtions cannot be cured although most can be treated. Tinnitus is just one of many medical condtions that there is currently no cure for. It has been affecting people for thousands of years and goes back to the Egyptians, when the first medical account of it was recorded. Habituating to tinnitus is the best way forward at the moment. One should try and get the best treatment that they cannot afford if they have difficulty coping with this condition. Unfortunately habituation and treatment for tinnitus is not acceptable for some people. Therefore, they will spend a lot of time being miserable and I think this is such a waste. Tinnitus can be debiltating when severe but in a lot of cases this can be relieved with treatment.

Michael

 

If you want to try and make a difference then maybe join our teams.

 

What teams Glynis?

 

I will make a donation to ATA, maybe I will make a monthly contribution, or a one time payment....I haven't decided on that just yet.

I would urge everybody on this board to donate....even if only very little....it we all contributed a little, it could amount to a good portion.

 

I agree, I’m all for raising the tinnitus flag and getting some recognition. We can all help by doing our own fund raising campaigns for various tinnitus charities and by spreading the word via social media etc. The problem is that coordinating people on a huge scale to really pull out all the stops is incredibly difficult. The majority of people seemingly want all this to happen, but are kind of hoping somebody else does it. The knock on mentality is that not a whole lot gets done unfortunately. We need to raise the profile of tinnitus in general but we aren’t the only condition in town. There’s many other people looking to raise the profile of other problems too.

I personally don’t think it matters how we deal with our tinnitus (the primary objective is to feel better with what we can do right now). Just make sure the world knows how detrimental and devastating it can be. To be fair, a lot of people do know, they just don’t understand it like a sufferer does. However, I have noticed there’s quite a bit more publicity about it; particularly in the Daily Mail (UK).

 

The funding for research is laughable, the current project pushed by the EU received a measly 10 million euros. that's barely enough to pay for the lunch of the researchers involved over the next 4 years, that and the fact the research is being done by students, not actual professors or researchers but students ...

I think the only way to get some real awareness going is by petitioning celebrities with Tinnitus to join in on the action, thus far the only ''real'' celebrity to really have done anything for awareness is William Shatner, this while there are loads of artists and celebs with tinnitus, I mean Bono from U2 who is worth fucking $700 million has it but has not even raised a finger to create awareness. If three celebs of this stature would donate 10 million each that would already triple the budget given by the EU. Maybe we as a community here on TT should work on approaching celebrities who are known to have tinnitus and get them to raise more awareness and funding ...

 

Yea I know. I’m well aware of how bad the research money is which is why I flagged this up. The only way a difference can be made is to change this fundamental factor. The celebrity route has been tried many times on here via twitter and email. Nothing ever comes of it. It’s a monumental task trying to steer more money towards tinnitus.

 

Twitter and email will get you nowhere, I actually know some very famous DJ's through a business associate and friend of mine, they are familiar with all the top DJ's globally so perhaps I can relay a message through them.

Email and Twitter gets bombarded with fan mail and is handled by management, no chance ...

 

For most people that’s the only way to get hold of a celebrity short of stalking them. If you know some people then see what you can do. I don’t think they are very receptive though as most don’t consider tinnitus a big problem. Either none of them have it bad enough or their extreme wealth kinda takes the edge off it.

 

Steve Aoki recently got it, so do several other guys and it's a constant fear for them. most of them are very aware. I'll speak with my friend, see what he thinks, he knows Steve as well. Thing is there is only so much money can buy, they just accept it like the rest of us.

 

Oh I was just going to link it to you. Glad you found the information on the research forum.

That is a sad remark. Did you think over 19 million dollars donated and earmarked for research by one individual Matteo de Nora is laughable? Nineteen million dollars is not laughable at all.

Do you think celebrities would give without expectations? I have been there and done that years ago and the "famous" out here in LaLa land don't care to be involved in any way. What amount do you think William Shatner has donated?
He has one title: Honary member on the ATA board of directors.

 

Exactly @Ed209 Tinnitus is very common and the majority of people that have it outside of a tinnitus forum, it isn't a problem and they, habituate within a short period of time. Many of them haven't been to ENT clinic about it or received any treatment. I have had this condition for 22 years and nothing much has changed regarding research to find a cure. When I first got tinnitus I was very enthusiastic to learn what the medical profession were doing to find a cure, and couldn't wait for my magazine subscription to drop through my door. I took special interest whenever a tinnitus conference was held. I still have a couple of DVDs that I bought, which were recorded at these tinnitus seminars. I listened to doctors talking about tinnitus and the latest treatments.

After a while my interest waned because it never seemed to be getting any closer to finding a cure. I decided to concentrate on living the best life that I can with the treatment that was available and felt a lot better for doing this. This is the reason I no longer read tinnitus research data and have no interest in tinnitus seminars nor would I ever go to one. All that I observed on the two DVDs that I have, were doctors congratulating each other and giving high fives and lording it over their seated audience that look upon them as something special, perhaps because they are medically qualified. Please read below, a section of text taken from my article: Tinnitus, A Personal View, to see what I think about one that I observed.

All the best
Michael

20 years ago when a video tape recorder was in many homes. I thought my luck was in when I had the opportunity to borrow a VHS tape of a tinnitus seminar held by a Dr, that worked in ENT and was also a tinnitus expert and wrote a book on it. The venue was in a large hall. He stood on a podium behind a lectern with microphone and presided over his seated audience and looked very official. After his introduction he said that he would answer any questions at the end of the evening. At last I thought I was going to learn something and settled down to watch the hour-long tape.

To say I was disappointed at what I had seen would be a polite way of describing it. For one hour I watched and listened to this person say, that everyone gets tinnitus occasionally. It is mostly to do with noisy background activity within the body and it travels up to the auditory system where the signals are transmitted to the brain. Most people can easily ignore these signals was his theory but those with tinnitus, have allowed their brain to focus on them, until they become louder and eventually become a problem. He asked the audience, how many had been for a night out where the music was played loud and at the end of the evening their ears were ringing?

Nearly everyone put their hand up. He walked pompously from behind the lectern and stood at the front of the stage and said “And by the morning the ringing has gone a way right”? Looking very pleased with himself he continued. “But in your case, you have allowed your brain to hold on to the tinnitus and when you don‘t hear it any longer you say”. In disbelief I watched him start to jog up and down the stage shouting out “Where’s my tinnitus, where’s my tinnitus”?

When he eventually stopped he could hardly contain the huge smile that was spread across his face because he looked very pleased with himself. However, the audience looked less than impressed at what they had seen as no one said a word. I watched the tape until the end and sent it back with a letter of thanks and my comments that were not favourable. My letter was printed in that tinnitus magazine to warn other potential readers of what to expect before asking to borrow it.

What I had witnessed all those years ago on that video by this so called tinnitus expert, was nothing short of mocking people that find tinnitus debilitating when it’s severe. It was very clear to me, that Dr had never experienced loud intrusive tinnitus once in his life. Thankfully, times have moved on and there is more understanding and help for people with tinnitus, in the medical field and not everyone thinks it is all in the mind or something that can easily be dismissed because it isn’t......

 

Habituation is very well possible if you have mild and moderate tinnitus, if you have it severely or its intrusive then you wont. I habituated to my mild tinnitus and it was like life was back to normal.

 

We all want to see *real help* in the form of treatment strategies; especially for those who are suffering terribly.

But, dont underestimate habituation in overcoming the distress of t.

many of us here have habituated = have our lives back.

 

I’ve had bad intrusive tinnitus for 3 years now, and also had a milder form since I was 18/19. I’ve got multiple sounds: a shrill high pitched dentist drill sound (which made me sick when it first kicked in), a lower pitched drone in my left ear, a kinda mid pitched tone and various hissing sounds and electrical zaps around my head. It’s a cocophany of noise and I can hear it over almost everything including heavy traffic noise, TV, Bars, restaurants etc.

I was depressed for months and didn’t even get out of bed for a week. It killed my music career which ripped out my soul. I am far removed from having mild tinnitus. These things take A LOT of time and support to get through. There’s no magic pill and there’s no one stop solution to getting through the storm. But that’s what most people want. Time is the greatest healer along with rebooting your life with some positive re-enforcement.

 

how did you get T?

 

My raging question is will curing hearing loss cure/reduce tinnitus caused by acoustic trauma?

Tinnitus is caused by the brain's auditory system listening harder due to less input from the auditory nerve which results in hyper neuronal activity in the auditory parts of the brain that spread to other regions of the brain eventually. It seems rational that restoring the input and we can expect a reduction in tinnitus.

Mechanisms of tinnitus -- a story of men,...

 

I’m a musician so I’m guessing loads of acoustic traumas over the years. One day I was at a really loud gig in a small room and it was like the straw that broke the camels back. 2/3 days later the intense ringing kicked in like my old T was on steroids. It was a whole new ball game and impossible to ignore.

 

If you are going to comment on my posts please have something interesting to say.....

 

That is not strictly true @dpdx because people like myself, @fishbone @glynis and others have severe intrusive tinnitus and we have habituated. It is all about one's mental attitude. Granted, there are some limitations to habituation that I have mentioned in my post: The habituation process. In the majority of cases people do habituate if not all of the time at least to some degree and that is positive. With respect, I have warned you about the dangers of reinforcing negative thinking. If you are going into TRT treatment or any other as you have mentioned, with this attitude, then you need to change it because you will not get the desired results.

I wish you well.
Michael

PS: I have habituated twice. The first time it took 2 years and the second 4 years.

 

I highly recommend not doing TRT if negativity exists. For me TRT lasted 8-12 months and at times i think I was doing it for 4-8 hours a day. It's been over 25+ years and I cannot recall everything. TRT is not cheap and if you want to have a chance at it working then banish the negativity. You will need to be dedicated and very disciplined for it to have a chance at working. I am NOT advising anything, you can do TRT or not do TRT, that's your choice.

I had horrible hyperacusis and the pain and torment it put me through. I owe a lot to that audiologist and the TRT treatment that changed my life.

 

If a cure exists, glorify it. If NOT, then coping/habituation should be the next glorification. I rather cope and live my life, than wait for a cure to maybe come my way....

 

@Ed209 - a bit off topic I know Ed,
but can I ask you what your music is...?

 

I’m a guitarist and I play all sorts of stuff.

 

That is amazing that one person managed to donate such an amount, however where did it go, what research was done? Where are the results? Biomedical research has a spend of around $280 billion annually, the funds provided by the EU are not even going to make a dent neither will 19 million, this problem costs society billions and should be treated as such. Only way to raise awareness is through celebrities.

Celebrities with tinnitus would give (their time) because they have tinnitus, I have no idea what he donated but he is the only one that actually made an effort ... There are plenty of celebs with intrusive tinnitus habituated or not my guess is they'd rather be without it just like anyone else.

 

I want to be able to go to concerts, and other loud places, but T (and H) has ruined that for me, so for me habituation will NEVER be good enough! I want a treatment that can stop it from getting worse so I can start living my life again, a good life, not this crippled one (for me a good life contains loud events such as concerts, shows ect.)

 

Don't we all? We just have to realise that most things are out of reach, even with earplugs, for some of us.

Until that treatment comes along, that is.