I Think It's a Mistake to Bank on a Cure

I guess a definitive, direct cure will be available in about 10-15 years, as it will require quite a good understanding of the brain. There will be many other treatments before though (bimodal stimulation, hearing loss medication, etc.).

Also, this shouldn't be forgotten:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6205278/

 

@AVIYT

I am going to be candid and possibly upset a few people that read this post which is not my intention but I'm going to speak the truth as I see it about tinnitus, in particular "Noise induced" based on my 23 years experience with it. Counselling and corresponding with people with this condition.

I know how debilitating tinnitus can be, for I spent 2 years habituating to it the first time and ten years later succumbed to a second noise trauma, that took over 4 years to habituate. If it wasn't for clonazepam, I dread to think what would happened, for I was taken to such extremes with a cacophony of noise in my head, that I went to bed and prayed I wouldn't awake. My ENT consultant and Hearing Therapist, have told me they rarely see people with my type of tinnitus, because it has such huge variations in intensity which was very difficult to get used to. From: complete silence, mild, moderate, severe, and extremely severe. No two days were the same for over 4 years so I know whereof I speak.

Medication will not agree with everyone and this applies to any medical condition that requires treatment, but it is there and I believe one should try. I was unable to read for two years and thought my life was over.

With respect AVIYT, it is people like you with your negative attitude to tinnitus will forever feel sorry for yourself. At every opportunity you will try to extinguish and diminish any hope, inspiration and positivity that anyone has to help people with this condition to get better. You prefer to wallow in self pity and feel sorry for yourself and prefer to vent your frustrations here and on other social media platforms complaining why hasn't a cure for tinnitus been found. I have news for you: 19 out of 20 medical conditions cannot be cured. Tinnitus is just one in a long list of conditions that can't be cured at present but, can in many instances be treated.

Instead of looking what you're able to do with tinnitus and take positivity from that, you prefer to dwell on being negative. I put it to you and others with your mindset, that you are your own worst enemy. Tinnitus is 90% mental by this, I mean it is intrinsically linked to our mental and emotional wellbeing. If you just focus on being negative you'll have little chance of ever enjoying what life has to offer.


I would rather be happy than right.

Many years ago when I first got tinnitus, I was going through a difficult time like many newbies do. I read a newspaper article that helped to change my thinking and put me on the road to habituation. It mentioned 19 out of 20 medical conditions couldn’t be cured. At this moment, tinnitus is one of them.

Many people with intrusive tinnitus experience anxiety, depression and low moods. With time they often improve and some with the help of medications eventually habituate and can be weened off meds. Others may experience spikes in their T, which can make them prone to mood swings. These people still manage to find a way through it with determination, character and inner strength.

There are others that will accept nothing less than a complete cure and therefore, never be able to habituate to tinnitus even if they had the best treatment in the world. This is mentioned in the TRT (tinnitus retraining therapy) book, written by Professor Pawel Jastreboff and Jonathan Hazell, and I agree with them. My experience as a Tinnitus support contact, has involved talking to many people on the telephone and on tinnitus forums. Unfortunately, some people want to drag everyone else down with their pessimism.

Just as there are positive thinking people that are prepared to try and make a life with their tinnitus, negative ones prefer to sit and do nothing. Moaning and groaning and feeling sorry for themselves because of their own weakness. Some blame the world and every health professional and medical organisation for their misfortune in life and that is the sobering truth, and it can be difficult for them to change.

There are those reading this post that won’t like my comments and can't wait to jump on the keyboard to unleash their fury. Just before you do take time out and think. Ask yourself and be honest. What have you achieved with all your negative thinking? Absolutely nothing. Even if you are right it doesn’t make for a fulfilling life and it is possible with tinnitus. Perhaps it’s time to change your strategy to one of positivity.

Michael

PS: There is nothing wrong with being occasionally negative especially with a condtion such as tinnitus. However, everything must be kept in balance, and therefore one must try not to let negativity become all-consuming.

 

So Sorry Michael to hear about your troubles you have had with your tinnitus over the years, It really goes to prove this horrendous condition is just so unpredictable. I am not anti medications for tinnitus and I am sorry if you miss read my intentions of my post... I do not believe that all medications hinder a patients recovery, I have previously taken an antidepressant for my tinnitus. I was solely warning of the use of Benzodiazepines for tinnitus especially long term continued usage.

I also fully understand many people can not habituate to their tinnitus and I truly feel for them...I maybe one of them myself this time. I am very happy to hear that the clonazepam is working for you, maybe that is because you are only using it when your tinnitus is severe, and not on a regular basis, so you may avoid the risk of dependence. I am not anti benzo for short term use. However, speaking from my own experience and reading others stories and speaking with other members on benzobuddies, regular use of this medication is dangerous.

Long term use of this class of medications is considered between 2-4 weeks, I have read many posts from people suffering for a two year period after two weeks continuous use of this drug, some people can take this drug for years before issues arise, so once again it differs. I respect your decision to disagree with me, I am cool with that. My husband that I have been married too for 37 years often disagrees with me on many topics., yet we still have a harmonious relationship. We are always therefore each other so too speak.

Micheal I believe it is a case of "United we stand, divided we fall" when it comes to getting the medical community to accept that tinnitus is worthy of a cure. For years it has been overlooked, I know things are starting to change on that slowly. I know you are a compassionate person and I commend you for your work on assisting people to deal with their tinnitus, However, due to my principals and values as a person, I will never stop warning people that the long term use of Benzodiazepines could lead to a worsening of their tinnitus and also give them so many other horrid symptoms for years.

https://www.benzoinfo.com/benzodiazepines/

Sending hugs and hope to everyone

 

Love your work Allan, I totally agree with everything you have stated, maybe if we can all make a noise somebody might listen. Until then "Our minds are our greatest asset" that is all I got left right now.

 

I am glad you are aware of the dangers of using Xanax, the link below I am sending you was started by a cardiologist that used Xanax for a five week period, she suffered for 4 years because of it... She also did not have tinnitus prior to Xanax use, she has suffered from it on and off ever since... Many people on a weekly basis are arriving at Tinnitus Talk due to benzo tolerance/withdrawal... Please read also @BenzoMom posts...

https://www.benzoinfo.com/

 

This is me at the moment. I'm finding it very hard to be even slightly positive.

As to banking on a cure: A cure will come, but I'd be surprised if it happens in my lifetime. But who knows, something could could come out of the woodwork by surprise at any time.

 

@Star64

Thank you for your kind comments. For the record, I am not an advocate of long term use for antidepressants or Benzodiazepines. As explained in many of my posts on this forum. When tinnitus reaches a severe level of intensity and this is sustained, it can seriously affect a person's mental and emotional wellbeing. Under these circumstances there are few options available to them to bring relief. Clonazepam has proven to help some people with severe tinnitus, as it did for me. However, I was advised by my ENT consultant to only take it when the tinnitus is severe. Which is usually for about 1 or 2 days no more. I was advised of this addictive tendency and side effects. I have never had a problem with it in 9 years and hope this continues.

Thank you once again for your kind words.
All the best

Michael

 

I think it's great and fine to have this viewpoint widely represented, because people should know what they're getting into with drugs. However -- everything has risks. 40,000 people die on the roads every year, and yet most of us still use cars all the time -- even though long term use of cars can certainly lead to a worsening of tinnitus, or, far, far worse things (I know a guy who's been stuck with like a 6-year-old's mind after a car accident when he was 14.... 35 years ago).

My point is that people who are maimed or dismembered by cars, tend to have a very different view on their practicality, than people who use cars for decades and maybe have one or two little bumps and scrapes but no major problems.

I think benzos are similar, and if we look at the sheer stats and numbers, they're actually very safe: they are the most commonly prescribed class of psychoactive drug in the US. However, when people do have very severe adverse reactions to withdrawal, it's an absolute horrorshow.

So, as with all things, it's a risk/reward issue.

 

Incorporating positivity into your life takes time and in some instances a person should see a Hearing Therapist or Audiologist, that specialises in tinnitus treatment and management, where counselling can be given. Please click on the links below and read my articles.

I wish you well.
Michael

https://www.tinnitustalk.com/threads/new-to-tinnitus-what-to-do.12558/
https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/
https://www.tinnitustalk.com/threads/acquiring-a-positive-mindset.23969/
https://www.tinnitustalk.com/threads/tinnitus-and-the-negative-mindset.23705/
https://www.tinnitustalk.com/threads/the-habituation-process.20767/
https://www.tinnitustalk.com/threads/is-positivity-important.23150/
https://www.tinnitustalk.com/threads/can-antidepressants-and-other-medications-help-tinnitus.18466/
https://www.tinnitustalk.com/threads/the-art-of-tinnitus.12066/

 

The militant habitation crowd has prolonged our suffering by convincing the rest of the world that it's really not a big deal. Look at the response to HIV in the 80s and 90s. That was almost entirely due to the fact that a very specific segment of our population was extremely vocal about finding a cure.

 

Can you imagine tinnitus sufferers becoming very vocal? I don't see it unfortunately.

And can you imagine the reaction from those without tinnitus?

HIV was seen as a real threat to humanity and the ways people died of AIDS made it very real.

Tinnitus can't be seen, and is therefore not seen as being a real problem.

 

People die from tinnitus too. Declining health, depression and suicide are very common. As far as it being an invisible injury the same could be said about the AIDS crisis early on. No one really cared because it was mostly seen as a problem associated with a very specific demographic. They managed to turn that to their advantage and shamed people into caring.

 

And how can we do the same, i.e. turn things to our advantage?

It doesn't help that there are millions of people who are living normal lives with less intrusive tinnitus.

 

We can start by not telling the rest of the world that it's not that big of a deal (e.g. "but muh habituation"). Imagine if high profile representatives of the gay community started saying that about HIV back in the 1980s. They would have been viewed as traitors and figuratively burned at the stake.

 

So how do we get high profile people to come forward and to make a difference?

 

The thing that really seemed to turn the tide with the AIDS epidemic was Ryan White. I don't know what the current equivalent of that would be.

 

[citations needed]

there have been multiple attempts to study this. A single, large sample multi-study analysis from Asia a couple years ago concluded that people with tinnitus have modestly increased suicide rates, but that the suicides which occurred mostly occurred in socially isolated elderly men, which is the #1 suicide demographic anyway. So, that one study found that tinnitus makes suicide slightly more likely in populations already at risk; several studies in the US have found no correlation between tinnitus loudness and suicide rates after adjusting for comorbidities.

There are like three high profile cases of people with tinnitus committing suicide that get reposted here every six weeks for no good reason I can discern, but that's not actually evidence of anything besides three random really depressing anecdotes that people like to repost because some people want to mire in hopelessness and try to find reasons that make it morally okay to check out of life. Guess what? You don't need one! If you're going to actually kill yourself, morality doesn't matter any more and you don't need any excuse.

This is, uh, a little revisionist, or at least, overly euphemistic. It was originally viewed as a problem for homosexuals and drug users that didn't affect "good, normal, hard working Americans". No one managed to shame right wing reactionaries into caring about homosexuals or drug users, but what happened was the disease crossed over into the general population, and suddenly people cared. This isn't entirely dissimilar to the current focus on opioids; the opioid "epidemic" has been ongoing in various marginalized minorities for decades, but now that lots of middle class white people are also dying, stop the presses its a full blown emergency!!

Your point about Ryan White is exactly on point: 1000 dead gays in NYC don't matter, but one middle class white kid gets sick and NATIONAL EMERGENCY, CALL NANCY REAGAN. America!

Terrible analogy. Lots of people do habituate or otherwise come to terms with their tinnitus to an extent that it's not a big focus of their lives (and are therefore probably disinclined to want to think about it more than they have to). No one with clinical HIV just magically "gets over it" psychologically and returns to a normal life.

I think there are a lot more parallels between people with our problem, and people with CRPS, fibromyalgia or other poorly-understood, seriously painful, chronic diseases. But I don't really think we have much in common with the 80s HIV population, either clinically, socially or medically.

 

A child going through torment due to tinnitus, who self harms? A veteran with amputated limbs who complains more about the tinnitus than being in a wheelchair? These people are out there. They need to be found. How?

As the post above says, it really needs to be someone from the middle classes or higher to get attention though.

 

"citations needed"

You cited a study which by your words concluded that people with tinnitus have increased suicide rates. I suspect that many people that have committed suicide because of it get lumped into other categories such as depression or PTSD. It may also be a situation where it isn't the main cause but rather the straw that broke the camel's back because of a compromised ability to cope with other problems.

"It was originally viewed as a problem for homosexuals and drug users that didn't affect good, normal, hard working Americans"

Yes. That was exactly the point I was making. Congratulations on managing to (almost) figure that out.

"No one managed to shame right wing reactionaries into caring about homosexuals or drug users, but what happened was the disease crossed over into the general population, and suddenly people cared."

There was endless whining in the media about president Reagan not saying the word AIDS until 1985. And as I acknowledged in another post Ryan White was the catalyst that made the average American recognize the severity of the problem. That's why the celebrity community jumped on that bandwagon. Do you really think Elton John would have given a f**k about Ryan White if he was dying of cancer?

"Terrible analogy. Lots of people do habituate or otherwise come to terms with their tinnitus to an extent that it's not a big focus of their lives"

And lots of people learned to live with HIV. Not everyone that contracted the virus developed AIDS. Just ask Magic Johnson.

"But I don't really think we have much in common with the 80s HIV population, either clinically, socially or medically."

Fortunately, you've given us little reason to care what you think.

 

Response to linearb:

With all due respect, I have been analyzing all sorts of websites on tinnitus ever since I got this condition on 01/2014 and I have encountered so many tragic, heartbreaking notices of suicides that I eventually lost count. This includes reporters' articles from interviews with the ATA, personal stories on all sorts of YouTube sites, reports from the British News Media, and most tellingly the number of sufferers who once posted on this forum who were never heard from again (or who we learned about for a fact).

Let's not forget the consequential pathologies from this condition such as alcoholism, drug addiction, divorce, incapacitation that led to lifelong reclusiveness, domestic and other forms of violence, lives generally ruined that led to homelessness, and misdiagnoses that led to treatments for unrelated mental illnesses.

 

The whole problem with trying to narrow down the approximate suicide rate for Tinnitus is the fact, that most Tinnitus suicides are written off as either depression, or some unspecified mental illness.
This is why mesauring the true scope of this tragedy is next to impossible and we can only speculate by using the little information we have, such as suicide notes, posters dissapearing, our own suicidal thoughts etc.

My own gut feeling tells me, that if the true numbers were known, it would be most likely shocking even to people like myself, whom already have no problem believing, that a chronic, torturous (and so far incurable) condition such as Tinnitus, is more than enough of a trigger for suicide just by itself.

Either that, or as you had already mentioned above, it is a trigger for the consequential pathologies, which then lead to suicide.

Most of us can agree, that suicidal ideation amongst those affected by severe Tinnitus is literally off the scale.
What we don't know, is the percentage of sufferers, who take it to the next level.

 

https://www.globenewswire.com/news-...-2-Clinical-Trial-of-OTO-313-in-Tinnitus.html

 

There is tinnitus and there is TINNITUS!!!
Even mild tinnitus sufferers won't understand the difference. So a non tinnitus sufferer will never believe that tinnitus could lead to suicide, but the sad reality is that people don't talk about it or like Harley said: the suicide will be written off as a depression. But there are stories online that reveal the tinnitus was the reason for suicide. And how many people with tinnitus never were/are online to speak about suicide because of tinnitus.

 

y'all wanna ignore the relevant data and focus on dying, instead of living as richly as possible with this nonsense condition? no sweat off my back

 

In my vast intellect that surpasses entire armies of Steven Hawkingses, I postulate that we need to find out if FX-322 helped with tinnitus. How do we bitch hard/loud enough to get that answer like now?

 

I have a feeling that Neville Chamberlain would have been a big Habituation proponent.

Neville Chamberlain "Peace in our...

 

I regard your comment about defining this as a "nonsense condition" as a wholly inappropriate attempt to trivialize the magnitude of this affliction.
If in fact this is no more than "nonsense" why then is there any imperative for fully developed research towards a cure?

 

Thank you for understanding my position and viewpoint on these drugs with respect, because truth be known it was your posts to me when I reached out after hitting tolerance on clonazepam at .5 not to reinstate or updose this drug.

You see you pointed out to me that your own tinnitus was probably a combination of noise and benzo induced, just like mine is now. I know you reinstated because they work for you, they made you feel normal again, So I fully understand your choice to continue to use this drug.

I am actually really happy that somebody is in a good space. I have nothing but respect for you and your dedication to the tinnitus community. I know you understand that benzos are extremely unpredictable, dangerous, hellishly difficult to withdraw from and that the effect your are getting now may not be sustainable, you know the devil you are dealing with Unfortunately, many do not. All I am trying to do with the best intentions is warn, I will always support people regardless of their choices.

Only oneself can tell which path is the right one for them, I only hope one day these drugs come with informed consent, that is why I stand behind the benzo coalition. I do not want them banned, I do not want to subject people to come off these drugs unwillingly. Many elderly residents are on oxazepam here in Australia in Aged care, which is another passion of mine and I will always advocate for them too.

I was just grateful for your honest and open account with this class of drug, and your warning about them, because even though I am training like a warrior and trying hard to think like a warrior, I know I would not have the strength that yourself and others have had, to go through benzo withdrawal more than once.

 

You can talk about the fact that tinnitus can be debilitating and still try to live your life as much as possible. Not sure if I'm missing something here but weren't other members simply talking about tinnitus being potentially debilitating? And ignoring relevant data? We know millions are suffering, we can argue how many people actually kill themselves but I don't think we even need high numbers of suicide to raise more awareness.

 

"Nonsense", as in "irrational, defies logical understanding, imposes insane requirements and limits on life", nothing more, nothing less. When my best friend died of cancer at 32, I also thought that was "nonsense", for the same reasons. Sorry if my choice of words bugged you; for me this is a coping skill, I hear the noise and I think "ah yes, another day with this nonsense". I find that I can have that thought, not dwell on it, and let it go. That was something I decided, after a few years of meditation: for me, the words I choose to use to think about and express things, impact the way I think and feel about them. I have no idea if this is generally true or an odd quirk of my personality, though I suspect the former (whole schools of contemplative philosophy are based on this idea, Yogacara for instance).

I totally agree with you. What I object to is people implying there's some kind of tinnitus suicide epidemic based when the data we have doesn't support that -- just like I object to certain posters demonizing headphones based on anecdotal experiences and totally lacking a data-based viewpoint. I totally agree that there doesn't need to be such an epidemic, for tinnitus to be a horrible condition that seriously degrades the life quality of millions of people, which needs more medical attention: that is simply true, and we don't need to invent facts or extrapolate from small anecdotal data sets to make that point.

I don't care to argue about who is killing themselves, or not, but having spent probably 15 hours reading every available fulltext on this subject, when I see people making sweeping statements that absolutely can't be substantiated by the literature, I'm probably going to object, because I am science minded and RCT driven by the facts of my birth, upbringing, education and professional life. The reason I think this is important is that I know from experience that when I am in a state of tinnitus distress, sitting around reading about people checking out, and talking oneself up into a frenzy and convincing oneself that these suicides are a lot more common than they actually are -- that's directly counterproductive to finding a way to live with this, as richly as possible. Obviously someone with a 2db whisper sound is going to have an easier time doing that than someone with a 35db klaxon in their head, but I don't think that matters much: the goal should be the same.

Eh, I think if you had to do it, you would. I am not a very strong person, so there was a lot of screaming and crying and throwing things involved, but I got through it twice and I expect I'll be able to do that again if the time comes (UMich? Or the drug stops working, that would be the bad reason to have to come off).

Er, I don't think I said that, the most I said was "I don't know". My initial onset did follow mild benzo use... as well as SSRIs, accutane, wellbuterin, and other things that are overall scarier to me than benzos. I was able to withdraw from benzos after 5 years with no worsening, and my tinnitus stayed stable until a noise trauma in 2010.

So, while I don't actually know what caused what, I do not believe that benzodiazepines caused or worsened my tinnitus. They did make my tinnitus incredibly unpleasant to deal with during withdrawal.