Suicidal

[DaveFromChicago]

To Brian P:

In the past 7.5 years I have spent about $12,500.00 on what were initially ballyhooed as "finally-a-real-solution" treatments, supplements, etc. (with the imprimatur by so-called professionals), all of which affected my tinnitus about as much as shining a flashlight on my head would have done.

This is especially true of Desyncra, which cost $5,269.00 (and they are no longer is business).

The latest attraction that will soon be coming to an Audiologist Near You from the Tinnitus Treatment Carnival will be Lenire; just look at the number of new locations proliferating throughout Western Europe on their Website Map.

Unfortunately our FDA Regulatory Agencies have far lighter standards for approving non-drug treatments than for drug-associated ones.

All of which means that they will very probably soon have permission to peddle this apparently placebo-wishful-magical thinking device in the USA.

And just look how they are no longer even promising any diminution in tinnitus volume; they simply claim that it will (and I have no idea how) enable you to "manage" your tinnitus more effectively (and all for the bargain basement cost of approximately $3,100.00, and whatever our record-high Cook County sales tax appends to this).

My only demurral consists in hoping that Dr. Shore's device is available next year.

Given the Mike-Tyson-Inside-Right-Uppercut expensiveness of these devices, I am still going to very carefully evaluate Dr. Shore's device if and when it is available.

 

[Tanni]

The last few months have been a very difficult time for me. I see this thread and I feel so sorry for everyone.

A couple of months ago, a very close uncle of mine went into hospital to have a minor procedure done. He spoke to my mom on the phone just prior and everything was fine. The following day, she had a call from Addensbrook hospital in Cambridge (which was not the hospital he was in) to say that he was in intensive care and on life support. I went to see him and he looked terrible. To cut a long story short, he passed away about two weeks later with a few of us around his bedside. He would never have known we were even there, or that he was dying. The last thing he would ever have been aware of was going under for surgery. His life was extraordinary because he toured the world as a comedian and entertainer. He wrote shows for theatre and had bit parts in various movies and TV shows. He was larger than life and pulled off some of the funniest pranks I've ever seen.

He was also like a second father to us as when we were kids we would go over to his for our holidays, every year, and he would take us all over the place. They are memories that will live with me forever. He also stayed over at my mom and dads house every Christmas; he was my mom's twin brother. After his passing, there was a big fallout within the family that didn't need to happen, but it got pretty bad. It stemmed from the fact that he didn't have funeral cover, and arguments ensued over how his affairs should be sorted (and it was nothing to do with greed, either). This led to my mom making an attempt on her life, and she ended up being rushed to hospital via an ambulance. It was a terribly dark time for all involved. She pulled through, but she is still extremely unwell, and so is my dad.

It's another reminder for me of how quickly life can be pulled away from us. I see a thread like this full of lost souls and it's just so tragic to read.

Ed, I'm so sorry. He sounds like a fascinating man.

Reading this thread makes me feel so powerless, because I want to help everyone so badly. But words are completely inadequate, of course.

However, I just want you to know that I love reading your posts, and I'm always happy to see you around.

 

[Brian P]

@DaveFromChicago, all of it is junk. My tinnitus is from Ménière's and it is fucking loud and piercing. My last hope is antiviral medication, as apparently Ménière's may be caused by herpes or the chicken pox virus. Valacyclovir may help.

I've had vertigo attacks lasting anywhere from 8 hours to 5 days plus the tinnitus. I want to die and I finally decided enough was enough. I made a plan, followed it, lost consciousness and woke up sick as a dog, hypoxic and had eye floaters and a headache but I was still alive. I was very angry to still be here.

 

[Kriszti]

@Brian P, you have probably tried everything for Meniere's already, so I apologize if I suggest something that you have already done, but in the local tinnitus support group there was a girl who had tenotomy on the middle ear muscles and her vertigo attacks were eliminated. Did nothing for the tinnitus though.

 

[DaveFromChicago]

To Brian P:

You had one post that said "Wake me up in 500 years when there is a cure."

During my last visit to my ENT Doctor, I asked when something effective would be available,
and he replied "In about 100 years."

I asked myself, "Is he just being a Prick or is this his blunt professional assessment (since he has otherwise displayed quite knowledgeable opinions in general)?"

However, another ENT Doctor in this Practice knew about Dr. Shore's methods, and did say that they ostensibly hold some level of promise; it is just that the current clinical trial sampling was too small to derive any certain conclusions from.

In a prior post, I mentioned that scene from the first film version of Capote's "In Cold Blood."

I recall the scene where Dick and Perry are in that shabby hotel room in Mexico.

Perry is holding an amateurish map of the Gulf Coast and blathering about how he will scuba dive to recover vast quantities of gold from sunken Spanish Galleons.

Dick rips the map from his hands and shouts, "Quit jackin' off - there ain't no buried treasure."

I often tell myself, "Quit jackin' off - you aren't going to get a surprise call from your Audiologist about any revolutionary treatment or drug."

Given the quite justified desperation because of the dire circumstances reported by James P., I seriously think it is incumbent on all of you Standard-Bearers for Habituation to mentor him on a step-by-step basis about achieving at least a modicum of relief.

In fact, given the extremity of his situation, I want this to serve as a test case for determining how applicable and efficacious such mentoring is.

It is morally and ethically imperative that you Get Started Now.

 

[Ed209]

Ed, I'm so sorry. He sounds like a fascinating man.

Reading this thread makes me feel so powerless, because I want to help everyone so badly. But words are completely inadequate, of course.

However, I just want you to know that I love reading your posts, and I'm always happy to see you around.

I could talk all day about him as his life truly was extraordinary. It would make an exceptional film because of all the stuff he did and achieved. In later life, he became an entertainment journalist and would frequently invite us to West End shows that he was reviewing (free tickets), as well as other amazing events. He invited us to the grand reopening of one of Centerparcs' holiday sites that had previously burnt down, and we got to spend a free week there checking out and using all the facilities before it was opened to the public. He was there to write a story on it and to give it a review. On the final day, there was a party in the main hall and it was full of celebrities. I remember being really impressed at the time.

His pranks were so legendary that as we were all in tears during his final moments, my mom said, "knowing him, he will probably open his eyes now and say I got you all, and have a right good laugh at us." We couldn't help but burst out into fits of laughter because that's exactly what he was like. And in a way, he brought out that laughter in us, even though he was minutes from leaving this world.

He shared the stage with many stars, and even performed with Dame Vera Lynn. He acted in many popular UK dramas and was in the film Rush (he still had his actors card and managed to get his brother, my uncle, a role as a police officer. He got to hang out with Ron Howard and Chris Hemsworth, etc. Special times indeed.

He was also extremely knowledgeable and was brilliant at quizzes, so much so, that he appeared on The Chase and some other shows. He tried to get on Who Wants to Be a Millionaire, but was never successful.

 

[Ed209]

I just typed his name and Vera Lynn into Google, and this story came up:

Retired Rutland entertainer shares his memories of working with Dame Vera Lynn, who has died

I haven't seen that article before, but I suppose I've never looked. I've never seen this photo, either:

It's hard to read the words of somebody you loved, in first person. It's as though he was alive again as I was reading it.

This is a photo of him in his heyday:

I even found someone selling an old newspaper clipping of his from 1968 on eBay:

It looks like I've gone down the rabbit hole. Sorry for clogging up this thread.

 

[Tanni]

I could talk all day about him as his life truly was extraordinary. It would make an exceptional film because of all the stuff he did and achieved. In later life, he became an entertainment journalist and would frequently invite us to West End shows that he was reviewing (free tickets), as well as other amazing events. He invited us to the grand reopening of one of Centerparcs' holiday sites that had previously burnt down, and we got to spend a free week there checking out and using all the facilities before it was opened to the public. He was there to write a story on it and to give it a review. On the final day, there was a party in the main hall and it was full of celebrities. I remember being really impressed at the time.

His pranks were so legendary that as we were all in tears during his final moments, my mom said, "knowing him, he will probably open his eyes now and say I got you all, and have a right good laugh at us." We couldn't help but burst out into fits of laughter because that's exactly what he was like. And in a way, he brought out that laughter in us, even though he was minutes from leaving this world.

He shared the stage with many stars, and even performed with Dame Vera Lynn. He acted in many popular UK dramas and was in the film Rush (he still had his actors card and managed to get his brother, my uncle, a role as a police officer. He got to hang out with Ron Howard and Chris Hemsworth, etc. Special times indeed.

He was also extremely knowledgeable and was brilliant at quizzes, so much so, that he appeared on The Chase and some other shows. He tried to get on Who Wants to Be a Millionaire, but was never successful.

I'm jealous - what a life! Hanging out with Ron Howard - amazing!!

If you can share his name, it would be cool to look him up. No worries if not.

It sounds rote, but people definitely continue to live if you remember them and talk about them. Death is not the end of life.

Edit: I see you shared his name above. He looks like you, Ed! From what I remember of your old profile photo, anyway

 

[Brian P]

Just imagine close to a billion people in the world have tinnitus and every single one has been told to live with it or "keep the TV on when you sleep."

Also as a side note do not let your doctor put you on benzodiazepines. They are poison. I was on the And quickly tried to taper off. They are not meant for long term use. I am still tapering. I was on them 3 months or so but not continuously. Withdrawal is pretty bad.

 

[Brian P]

To Brian P:

You had one post that said "Wake me up in 500 years when there is a cure."

During my last visit to my ENT Doctor, I asked when something effective would be available, and he replied "In about 100 years."

I asked myself, "Is he just being a Prick or is this his blunt professional assessment (since he has otherwise displayed quite knowledgeable opinions in general)?"

However, another ENT Doctor in this Practice knew about Dr. Shore's methods, and did say that they ostensibly hold some level of promise; it is just that the current clinical trial sampling was too small to derive any certain conclusions from.

In a prior post, I mentioned that scene from the first film version of Capote's "In Cold Blood."

I recall the scene where Dick and Perry are in that shabby hotel room in Mexico.

Perry is holding an amateurish map of the Gulf Coast and blathering about how he will scuba dive to recover vast quantities of gold from sunken Spanish Galleons.

Dick rips the map from his hands and shouts, "Quit jackin' off - there ain't no buried treasure."

I often tell myself, "Quit jackin' off - you aren't going to get a surprise call from your Audiologist about any revolutionary treatment or drug."

Given the quite justified desperation because of the dire circumstances reported by James P., I seriously think it is incumbent on all of you Standard-Bearers for Habituation to mentor him on a step-by-step basis about achieving at least a modicum of relief.

In fact, given the extremity of his situation, I want this to serve as a test case for determining how applicable and efficacious such mentoring is.

It is morally and ethically imperative that you Get Started Now.

It's pretty obvious we won't see a cure in our lifetime or even a decent treatment. Our great grandkids will probably get the same advice of habituation or leave the TV on while you sleep. Unreal. Or worse, go for CBT.

 

[Matchbox]

My thing seems to be slowly getting worse.
I used to hear crackling over a fan in the HBOT chamber, it was loud, and it only happened when it was working at max RPM.

Now I hear crackling if a car passes our house, even when the windows are closed. I think it may be recruitment or something similar, I may have lost more synapses...

You have the joy of sound distortion.

I did HBOT, it was a horror show for various reasons. In the end? It made a dent in "just" the ringing. I'd kill to have just that back.

Not worth the risk man.

I can't be "sure" as to what happened, but HBOT 100% made whatever "started" as bad, end 100% worse.

 

[Watasha]

There's no real tinnitus research going on. Just a bunch of companies stealing money from investors and sham treatments and quackery. They have been saying the same thing for the last 20 years. Keep the TV on while you sleep and don't worry about it.

Have you listened to any of the podcasts Tinnitus Talk has produced? There is reason to be hopeful. I am sorry that you are suffering but I want others here to know there is research going on and to hang in there.

 

[Tau]

You have the joy of sound distortion.

I did HBOT, it was a horror show for various reasons. In the end? It made a dent in "just" the ringing. I'd kill to have just that back.

Not worth the risk man.

I can't be "sure" as to what happened, but HBOT 100% made whatever "started" as bad, end 100% worse.

HBOT wasn't as bad as the MRI to me. After the MRI I got a ton of new distortions. It's literally dead synapses and sound gets amplified at those or close frequencies, but it's flat and disgusting due to the lack of proper signal. Literally running my hand across the bedsheets gives me flat humming.

 

[Chinmoku]

Have you listened to any of the podcasts Tinnitus Talk has produced? There is reason to be hopeful. I am sorry that you are suffering but I want others here to know there is research going on and to hang in there.

Also @Zugzug's spreadsheet lists a lot of treatments that might help if not resolve tinnitus. The problem is the multifactorial nature of this disease. We need an array of effective treatments for different patients. That might take a long time. More generally medicine has to move to a more rigorous discipline. Medical doctors do a few things very well but are almost useless or worse for many many conditions.

 

[Brian P]

Have you listened to any of the podcasts Tinnitus Talk has produced? There is reason to be hopeful. I am sorry that you are suffering but I want others here to know there is research going on and to hang in there.

That's all it is, talk. Talk is cheap. Sound Pharmaceuticals and Otonomy are jokes.

 

[Stacken77]

That's all it is, talk. Talk is cheap. Sound Pharmaceuticals and Otonomy are jokes.

Just my opinion; cures that aim to restore hearing seems far off, but I'm quite hopeful for drugs that targets voltage channels and tries to reduce hyperactivity e.g., in the auditory cortex. That could probably work for more cases and is not far off in the future at all.

We have reasons to be hopeful.

 

[Exit]

That's all it is, talk. Talk is cheap. Sound Pharmaceuticals and Otonomy are jokes.

Otonomy has behaved professional as long as I know, but they could step on it...

Sunny here, stupid students all over the place... too bad COVID-19 didn't kill them all.

 

[Matchbox]

Just my opinion; cures that aim to restore hearing seems far off, but I'm quite hopeful for drugs that targets voltage channels and tries to reduce hyperactivity e.g., in the auditory cortex. That could probably work for more cases and is not far off in the future at all.

We have reasons to be hopeful.

Xenon is literally our best shot. Then Otonomy.

But I agree with @Brian P about it being a bit of a joke, the "testing" and standards they use for trials make any worthwhile treatment washed out in nonsense noise. Diagnosis needs serious improvement. Basing trials off flawed sampling techniques is just going to breed false negatives. Only a disservice to everyone.

 

[Juan]

I want to say I can do it, that I can persevere, but I don't think I can. This new injury from the MRI has completely screwed me over. Most sounds give me distortion and I have moderate to severe tinnitus at night (10+ sounds). Even if stems help, they won't fix me completely. I can't drive without distortions, hell, I can't even cook or sleep, or type on the keyboard. Of course, work is out of the question as I need headphones for that. Games are out of the question, same idea.

The MRI setback will not clear until like 4 - 6 weeks. Right now your hearing is reacting but it will not stay like it is now, it will change in a few weeks and when it settles you will see how you really are.

An MRI is very loud so it takes time to get better or, better said, to get stable.

The medical profession is grossly misinformed (or play down the risks) when they recommend patients to get MRIs for pretty much anything, saying them that it carries no risk (but you have to sign informed consent - sometimes pages and pages - before taking an MRI test).

 

[aura]

@Zugzug, how are you?

 

[Tau]

The MRI setback will not clear until like 4 - 6 weeks. Right now your hearing is reacting but it will not stay like it is now, it will change in a few weeks and when it settles you will see how you really are.

An MRI is very loud so it takes time to get better or, better said, to get stable.

The medical profession is grossly misinformed (or play down the risks) when they recommend patients to get MRIs for pretty much anything, saying them that it carries no risk (but you have to sign informed consent - sometimes pages and pages - before taking an MRI test).

An MRI is literally harmless apart from the sound, though. The only dumb thing in this was the technician who didn't know the dB rating of the machine. Had I known it was 115 dB, I would not have gone in. That's also on me because I could have easily googled that beforehand.

My tinnitus is blaring like a siren today. Steroids are not helping yet.

 

[Juan]

The only dumb thing in this was the technician who didn't know the dB rating of the machine.

I think in general technicians do not give a second thought about decibel levels. Most of them would not know what to say, except that it is loud, and then they would say it's just 20 - 40 minutes inside the tube, and that everybody is ok with the test and blah blah blah... so even if you asked, I doubt they would have provided accurate info. Don't blame yourself. It's already done and you will feel better in a few weeks.

 

[Orions Pain]

My days are numbered. I wish I could just slip away into nonexistence.

 

[grate_biff]

My days are numbered. I wish I could just slip away into nonexistence.

Hi @Orions Pain, I'm sad to hear that. I'm the same way.
But I have put forward a kind of an ultimatum to my GP.
It's either benzo for life or death for me.

I can see from previous posts that you are reluctant to benzo:

I don't want to resort to benzos as taking something once a week or sparingly won't be enough and I don't trust myself to being careful with them.

Surely it must be better than offing one self?

I'm, needless to say, pretty excited to hear his response.

 

[Ondine]

None of you here knows me, but I've read this thread daily for a few months and wanted to share a few words. You certainly are among the bravest people I've ever seen, though no one should ever have to be this strong just in order to live, or survive... I sincerely hope it's not uncalled for since I'm basically unknown, but I'm sending love and support to everyone who needs it here, useless as it may be. Not a day goes by that I don't think of you and hope for a respite.

 

[Taw]

Most of them would not know what to say, except that it is loud, and then they would say it's just 20 - 40 minutes inside the tube, and that everybody is ok with the test and blah blah blah...

Yeah, I hate these phrases and most people use them all the time: "everyone is ok with this, we had no problems so far with other patients."

And of course they don't take the responsibility for the consequences, we endure the pain, not them.

 

[Lurius]

None of you here knows me, but I've read this thread daily for a few months and wanted to share a few words. You certainly are among the bravest people I've ever seen, though no one should ever have to be this strong just in order to live, or survive... I sincerely hope it's not uncalled for since I'm basically unknown, but I'm sending love and support to everyone who needs it here, useless as it may be. Not a day goes by that I don't think of you and hope for a respite.

That's very nice of you to say, I needed this today.

 

[tpj]

My goodish ear is now fucked. Did my crying, with no doubt, more to come. Don't the spikes ever stop? Why can't it just plateau and stay there? I wish there was something like Pegasos in Australia. Even if you didn't use it right now, just knowing you had that option.

 

[MrBungle]

I think it speaks volumes of how poorly tinnitus patients are understood or cared for when often a GP/Doctor's first line of investigation, once they establish you haven't got ears full or wax or Lego, is to send you for an MRI.

Basically like sticking your head in the world's biggest basstube, obviously a great idea for us sufferers.

I had an MRI a few days before I caused my latest spike/surge with a hand tool (not a loud one) and I know it contributed to it, bloody ridiculously loud. I wish I had just stopped it immediately.

This was 9 months ago and it hasn't changed a jot, I live in constant fear of making it worse again. It's an absolute nightmare as I am only borderline dealing with it, any worse and it would begin to take over.

 

[ajc]

I wish there was something like Pegasos in Australia. Even if you didn't use it right now, just knowing you had that option.

Pegasos does accept international clients. So the option is there if you reach the end of the rope. Hopefully you don't.