Give Me Some Hope

Hey, Folks -

T has been bad recently. I get really down when I think that I could be stuck with it for the rest of my life. If I knew a cure was on the way, whether it was 2 years or 20 years, I could turn my thinking around.

It just seems like no one cares.

Can anyone fill me in on the latest research? I have checked the Research News forums, but couldn't find much in the way of recent developments; there may not be any.

I tried contacting UPitt to ask about the Allergan study, but they wouldn't give me any information because the study is ongoing. I just hung up the phone from frustration.

Thanks.

 

My advice to you is to take each day as it comes.

If tinnitus is your only malady in life, consider yourself fortunate compared to countless others who spend every day in agonizing physical pain.

 

I came across a video on youtube video of "locked-in" syndrome. Got me thinking elsewise about T. One day at a time is right.

@Skulldrey

I posted a video on youtube recently talking about headphone dangers and tinnitus awareness. A lot of people have it but just don't talk about it..and I found this out because after sharing it, a handful of people I know personally told me they have it.

Maybe we need a T challenge eh? Sounds silly but remember the ALS bucket challenge? Ours can be..who can stand listening to eeeeee for 5 minutes straight? It'll drive people nuts.

 

I am not discounting tinnitus, but compared to other ailments (cancer, diabetes, etc.) that afflict humans, it is not as bad.

 

Tinnitus still needs attention I did not know what it was until I got it. people need to be aware of it. I am all for tinnitus challenge.

 

I think this depends a lot on whether one has garden variety T that eventually can basically be ignored, more aggressive T like some of us have that periodically causes significant distress and physical pain, or severely disabling T/H that causes constant pain and the inability to tolerate basic sounds like human speech.

I'd say I'm in the middle group; I would certainly not trade my T for cancer, but I'd rather have diabetes than the extreme forms of T, by a long shot.

The calculus of miseries isn't very useful.

 

I would take diabetes!

 

At least those with diseases you list there is hope right now for real help, as a result of research that is backed by real recognition of what those diseases imply. With T & H people are still arguing over definitions.

 

I have relatives with diabetes. Save for one uncle who died of gangrene because he was too stubborn to make dietary changes, all of those relatives are living normal lives. They can still fly on airplanes, watch movies, attend concerts, enjoy music, live their daily lives without fear of sound. It's because sugar is easier to avoid than sound. Also, people with diabetes can control the major factors influencing their illness like insulin, diet, and exercise. But people with tinnitus (and hyperacusis and everything else that comes with it) don't have much control over their sound environment unless they're forced to live in isolation, which won't kill them but will make them wish it did.

Cancer is awful but if it's terminal enough to kill me in a month or less, or if it's early enough that it can be successfully treated with surgery, I'll take it in exchange for all my ear problems.

 

Sorry to read about your suffering...as you will see on here you are not alone
Somehow you have to get out of the negative thinking as it only makes it worse.
Try and find the good in life and just get on with it with your new companion T.
I see you list MUSE as the cause which kind of made me smile.
I have seem Muse many times from the Albert Hall to the Stade De France.
I just love Matts 'wailing' guitar, but thinking about it now it was kind of loud.
Not sure if the gigs cause my T as it started after a dental visit but the truth is I wouldn't have missed those gigs for the world.
Have a good day and maybe listen to a rare quiet Muse track...Unintended ?

 

I've had tinnitus for about 9 years less than you or something if you have had it since 2007... And I held onto hope for this past year, and despite not exposing myself to any excessive sound, despite taking nearly every supplement mentioned on this board, still it worsened all by itself, ssnhl, low freq loss, loud low hum T start, worst thing, and still i have hope it somehow will get better, but even last time I saw my ENT he told me to stop hoping that basically. What else can we do? 10 years you have had it and still hoping... well in all honesty, I would say if I could hang in there 10 years like you have, there really may be human hearing regeneration in 10 years from now?? check the hidden hearing loss, and haircell regeneration threads to learn about the research that may be of interest, frequency therapuetics, that sort of stuff?

When you got T 10 years ago, was it bad? Were you desperate then? Have you had increases? How have you managed? Would you say it's ever improved at all?

 

Hi @Skulldrey
Well all look forward to the day when a cure will be found for tinnitus and therefore, like to keep abreast of any new research into the condition. For the moment, the best we can hope for is to habituate as much as we can. You have had tinnitus for quite a while and since it recently got worse, I’ll assume you were able to cope with it most of the time.

Tinnitus can become more intrusive for a variety of reasons, and if yours was initially caused by exposure to loud noise, then further exposure is the likely cause. Do you listen to audio through headphones or regularly attend venues where loud music is played? Concerts, clubs, gigs and the cinema? Using hearing protection one still needs to be careful. If you listen to music through headphones regularly, even at low level (something I don’t advise) this can make tinnitus worse for some people.

Do you run regularly on hard ground or use a treadmill? Studies have shown that aerobic exercise particularly running can make tinnitus worse for some people. I have been contacted by quite a few people that have noticed their tinnitus becoming more intrusive during and after running. I feel this is due to impact underfoot and travelling up through the body to the head and auditory system and this might irritate the cochlea in the inner ear.

Please click on the links below and read the articles as you might find them helpful.

All the best
Michael

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/
http://www.nytimes.com/1994/04/06/us/inner-ear-may-take-beating-from-high-impact-aerobics.html

 

There's tinnitus and there's TINNITUS...

The only thing i want is my healthy happy life pre-T. Without any illness. I would wish that one for each one of us but i know it's wishful thinking.

When my friends try to convince me that there are people with worse problems, it doesn't help. It's really no use to compare illnesses, disorders etc. It just doesn't make us feel better. I feel really sad today.

This thread is about hope that the research might give. Things seems to evolve slowly, but there is a good chance we won't catch up in this lifetime. This T reality is cruel and that is a fact. I hope i am wrong.

 

Well said @vermillion The statement @MikeL1972 has made, is a clear indication that he has never suffered from loud intrusive tinnitus, sustained for a long period of time. Otherwise, he would know how debilitating it can be. One only has to search on Google to see, what this condition is able to do to a person's state of mind when it is severe and what they will do to end their torment.

When tinnitus is severe it is comparable to any acute medical condition.
Michael

 

The most hutful comment, among many, has been 'there are worse things to have'. That's fine to say that, and probably true, but for me it is a massive adjustment to learn that possibly for the rest of my life I will be reading books to the sound equivalent of someone turning steel on a lathe, I can't go to the cinema or concerts, and being in restaurants with hyperacusis can be bothersome. I also do a desk job where I must endure the noise. I'm 42 and I'm supposed to be retiring at 68 in the NHS so that's a good few years left.

I'm not bothering to look for a cure or take supplements. I'm trying to adjust to the fact this may be here for the rest of my life. I'm getting on with my life as best I can and trying to make it an enjoyable one as far as I am able to do so.

If you can get any anxiety under control you are already half way there. I hope for you, and myself that time will be a healer.

 

@Parfait
Tinnitus comes in many forms and intensities and no two people experience it the same. Many people are able to habituate to tinnitus because it is mild or moderate. However, when it is severe and intrusive and this level of intensity is sustained it is a completely different condition I assure you. The statement @MikeL1972 made about tinnitus not being comparable to cancer, diabetes etc is totally wrong. I was medically retired from my job many years ago because of severe tinnitus. Suffering is suffering no matter what medical ailment it is. It is true, by itself tinnitus cannot kill a person but that isn't the end of the story. If tinnitus is severe enough it can affect a person's mental well-being considerably making them do something that they wouldn't normally do if they weren't in such a distressed state. There lies the paradox.

Michael
PS: Your hyperacusis can be cured with treatment and I advise you to ask your GP for a referral to ENT. Please click on the links below, and read the articles that I have written which you might find helpful.

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

Michael- Thanks very much for the links and for sharing your story, that is certainly sad to hear that you were medically retired. I can most definitely see why people are unable to work with this condition, as unbelievable as it might seem. I'm a psychologist and had my tinnitus remained severe (it is now probably moderate but still v bad) I would have considered a change in careeer as it was a struggle to get through every day at work with the distraction of a blasting tea kettle on your ear.

I've looked into trt at a local tinnitus clinic here in Glasgow and I was quoted £2,500 including the hearing aids and maskers. I was very nearly tempted to sign on the dotted line but as I was leaving he started to push me into getting the decibel test the next time I came along (I refused it at his appointment a second I did not see how it could lead to an improved treatment or diagnostic outcome) and I got frightened of being pushed into listening to loud noises in a booth and I bottled it and haven't been back.

I do wonder whether part of the efficacy of trt is due to a graded exposure approach to fear of loud noise. I think that's fine for ordinary noises below about 50db. I'm v skeptical that trt can 'cure' hyperacusis. I think psychologically it likely could feasibility reduce fear and startle responses but I just can't see it changing the auditory processing of the volume and changed tone of the sound.

Anyway, I digress. As to the original topic, I would say, try everything you can make life seem the way beforehand you got your tinnitus, and protect your eyes beyond everything. It can give you a lift to believe a cure might be in the way, I suppose but so far I've not really seen any cure that is particularly promising (but as Micheal says, TRT can have good results so you could try that...I'm hoping to maybe try it on the NHS and I'm currently on a long waiting list for ENT) but I suppose it depends on the reason for why you have the tinnitus in the first place. It's hard to see how it is going to be possible to restore hair cell function but there are good ways to help you manage it better.

 

First, I agree with @Parfait: "People have worse things" is not helpful. Suffering is not a contest.

@Skulldrey's tinnitus could make his life just as miserable as cancer would to someone else. Many people do not take our condition seriously, there are few healthcare professionals out there saying "Let me help you!"

Skulldrey, have you tried anything to ease your T? TRT can help some -- although it is expensive. I did a similar therapy, Neuromonics, plus cognitive behavioral therapy, and it helped. There are some other good suggestions here. Good luck.

 

Yeah the "worse things than T" trope is definitely not helpful.

As for hope, @Skulldrey, all I can say is to try to learn about anatomy, physiology, and pathology. You'll probably want a basic set of science knowledge as well, i.e. biology and chemistry. Try Khan Academy. Watch the entire course for biology and chemistry. It may take a while but do it (unless of course you feel comfortable with those subjects). Then go on to the health/medicine playlist. Don't go to the youtube page for Khan Academy, but sign up for an account on the website.

It's one thing to read about advances on google or forums. It's another thing to try to understand things. It will also take your mind off the T, if only for a moment.

 

@Parfait
I am writing on my tablet PC and not my regular computer so I apolgise for being brief. TRT can cure hyperacusis using white noise generators. I had very severe hyperacusis which was so bad, when people spoke to me my ears hurt. That was 21 years ago and it hasn't returned. Please read my article: Tinnitus, A Personal View, as I have explained it there.
You haven't had tinnitus long and are still in the early days. Most ENT Drs prefer to wait for at least 4 months preferably 6 before starting treatment like TRT or CBT. There is good reason for this. Please click on my Avatar and choose "started threads" in the list look for the post: TRT and when should it be started.
Best of luck
Michael

 

Actually Mike, you are. I'm sure you didn't set out to, but the effect of what you wrote is to discount it by putting a value on it in comparison to other conditions. It's not helpful, no matter how well intended.

 

Michael- I would be interested to read any research articles you can suggest that show that trt can cure hyperacusis. That is so great that you got over the h. Thankfully my h is not disabling, it's just a mild annoyance. I've read of folk having to use paper cups and that really must reduce ones quality of life.

 

Brother's in-law's tinnitus stopped suddenly overnight. It can happen! She had suffered from it for over ten years.

 

I don't have any research articles @Parfait but you can take my word for it that my hyperacusis is completely cured. I believe the majority of people that have hyperacusis which some call "reactive tinnitus" can be completely cured with time and the right treatment, as I've mentioned in my article Tinitus, A Personal View and Hyperacusis, As I see it.
Michael

PS: Try and not make negativity take a hold of you @Parfait as that can cause a real problem with tinnitus and hyperacusis. Please read my post: Positivity and tinnitus. It is in my article.
I wish you well.

 

Subjective tinnitus describes exactly it's subjectivity. My tinnitus in it's current state, which for me is the source of my phenomenal suffering, would be considered as a "cure" state for somebody's more debilitating case. I have no intention to underestimate @MikeL1972 and his possible suffering. After all he's in this community for the same reason we all are. We are seeking support because we are bothered from our T. However we should not forget our members who are here and literally lost themselves by this devilry. Not to mention members who are not here anymore... Many say rare cases, but these are the cases that need true awareness and must be taken seriously by the medical community. We cry for help here. Habituation for sure is welcome. But not possible for everyone, thus isn't and shouldn't be the gold standart.

 

@Skulldrey

I have nothing really to add to which hasn't been said so far. However as a side note, your cause of tinnitus has raised a smile. I made my tinnitus much worse attending a Muse concert in April 2016. All I can say is that the tinnitus has gotten better since then, so never give up hope that this can happen.

 

Thanks Michael for the positivity- it is encouraging to learn that your h has completely resolved which gives hope for us. And on a positive note I had tinnitus in 2007 and was completely cured of it after a few months.

 

Hi @Parfait,
I am saying my hyperacusis was completely cured no thet tinnitus. However, my tinnitus did reduce to a very low level to the point I rarely heard it. In 2008 I suffered a second noise trauma and my tinnitus returned with a vengeance but my hypercausis didn't.
Hope things improve for you.
All the best
Michael

 

Thanks for the replies everyone. It's worse when I'm at work and there's no sounds apart from the keyboard to distract me.

And while T isn't the only thing I suffer from, I agree with the sentiment that unhappiness is subjective. You can't judge someone's suffering; all that does is make you sound like a jerk.

Unfortunately, as with T, there's still not a whole lot of hope in this thread. Onward we march.

 

It is true as yet there is no cure for tinnitus. Please read the post below and it might help to change your point of view.

Positivity and Tinnitus

For some people prolonged intrusive tinnitus can be very stressful and at times debilitating. This can sometimes lead to depression and a person may need to go on a course of antidepressants. I have often been asked in tinnitus forums and via email “It is great if you’re able to be positive, but simply telling someone to be more positive about tinnitus isn’t going to change anything”. I want to clarify here and now, that isn’t what I mean.

Thinking more positive about tinnitus and bringing positivity into your life takes time it isn’t achieved overnight or by simply thinking to yourself “I must be positive about my life”.

If a person wants to improve the quality of their life they have to be prepared to try and help themselves, because there is no wonder drug or operation that can cure tinnitus at this time. Unless a person faces these facts they will forever be trawling the Internet going from forum to forum complaining why there is no treatment for tinnitus when actually many of these people want a complete cure.

I once read a newspaper article that mentioned: nineteen out of twenty medical conditions cannot be cured. Someone once told me “I don’t want to be positive about tinnitus, I hate it. Being positive wont make it go away". This is true, however, thinking more positive and bringing positivity into your life will reduce the perception on how you relate to tinnitus. CBT and TRT are based on having a positive attitude, without that these treatments aren’t effective.

Long before CBT, TRT and the Internet came on the scene Doctors have been telling tinnitus patients, there’s no cure you’ll have to learn to live with it. Most of us know this is easier said than done. So how does one start to think more positive about their tinnitus and to bring positivity into their life?

The fact that someone with tinnitus is reading this page suggests to me their tinnitus for today at least isn’t so intrusive that they are unable to function, for that I’m pleased because this is something positive, instead of lying in bed on medication doing nothing. If you are able to work that’s even better as your tinnitus isn’t so severe you’re incapacitated. I see this as something positive in a person’s life. Being able to earn a living and support yourself. Therefore, you’re able to do all the daily tasks one needs to survive in this world. You may have some difficulty granted, but you’re still achieving and that's progress.

It is still better than someone that is visually impaired or severely disabled and unable to earn a living. Or, people with severe tinnitus that are depressed and on medication and unable to work. So by looking at our own circumstances and seeing what we’re able to do and achieve we can think more positively about ourselves. There is nothing more satisfying than being independent and I suggest you hold onto those thoughts.

If you live by yourself consider getting a cat or a dog so your home environment won’t feel so lonely. If you have a partner and family think about spending some quality time with them, as this can help reinforce your sense of belonging, and the love that binds you together, then your T won’t make you feel so isolated. Sometimes opening up sharing your thoughts and how you feel can help immensely and keep negativity at bay.

I have just given a synopsis of what I believe can help a person’s quality of life improve with positive thinking. It doesn’t happen overnight but a lot can be achieved when one is prepared to try. By moving forwards and taking one day at a time you can occasionally look back and see how far you have come.

Michael