Suicidal

[dan]

Either way I don't think my particular case will benefit from any drug they're working on right now, and I don't want to suffer like this for another 60 years.

How do you know that? RL-81 is designed to work on the brain.

 

[dan]

I don't want a semi-life, I don't want a semi-me like @GlennS explains sometimes. I WANT my FULLY ME. My full myself, what I could have done without this fucking tinnitus shit. I don't want and nor accept any different.

I will never accept or get used to something that is not me anymore, i'ts just a worsened version of me how I was pre tinnitus. This is like surrender. I want MY FULLY SELF. What I was capable to do and achieve before this shit came in.

RL-81 + FX-322 = TINNITUS GONE

Wait for it! You are 25, ok so you lost 5 years of your normal life, but life at 30 is just as good or even better.

 

[bobvann]

RL-81 + FX-322 = TINNITUS GONE

Wait for it! You are 25, ok so you lost 5 years of your normal life, but life at 30 is just as good or even better.

Just like Lenire was going to be the savior right?

 

[Bartoli]

Biologist (defined as any specialty relating to regenerative medicine) does not have much representation in the clinical world at all.

What I meant was that doing research requires zoning in on a small fraction of the total picture, though I would argue the best researchers never lose sight of the global picture.

I just don't see where all these blanket statements about therapists and the psychological field come from as I'm sure you've never tried something like CBT. I somewhat understand your anger for not having a cure. Find me anyone who wouldn't be happy with a cure for tinnitus or hyperacusis, right?
The polarization between the field of the mind and that of the body like you represent it just isn't something I see in real life.

 

[dan]

Just like Lenire was going to be the savior right?

Tbh, I knew Lenire was bullshit. I never once participated in any Lenire discussion.
You can't fix tinnitus with white noise and electrical stimulation, nor by using magnetic fields or any sort of external influence. It's like trying to treat Leprosy using topical antibiotic cream.
Tinnitus is too deep rooted for that.
Need to attack the brain (Trobalt helped many people tremendously... Valeri, Danny Boy, Christian78, just to name a few).

RL-81 they say is 15X (that's HUGE) more potent than Trobalt! So we KNOW Trobalt works but it can cause death.
You can also attack by reducing hearing loss (FX-322's goal). A poster wrote their tinnitus goes away within 5 minutes when they put in their hearing aids...

Lenire you say??? It was almost a scam.

 

[bobvann]

So we KNOW Trobalt works but it can cause death.

Is that all Considering how we suffer some may risk it...

After the negative reaction I have had trying TRT aka hearing aid sound therapy, it became obvious that Lenire was NOT the way to go...

 

[alanisnotadj]

Tbh, I knew Lenire was bullshit. I never once participated in any Lenire discussion.
You can't fix tinnitus with white noise and electrical stimulation, nor by using magnetic fields or any sort of external influence. It's like trying to treat Leprosy using topical antibiotic cream.
Tinnitus is too deep rooted for that.
Need to attack the brain (Trobalt helped many people tremendously... Valeri, Danny Boy, Christian78, just to name a few).

RL-81 they say is 15X (that's HUGE) more potent than Trobalt! So we KNOW Trobalt works but it can cause death.
You can also attack by reducing hearing loss (FX-322's goal). A poster wrote their tinnitus goes away within 5 minutes when they put in their hearing aids...
Lenire you say??? It was almost a scam.

I've had tinnitus for 28 years (with extreme worsening 2 years ago) and nothing has ever improved it.

Lenire has been the only treatment to have a positive impact.
So to call it a scam is a bit excessive.

 

[ASilverLight]

Need to attack the brain (Trobalt helped many people tremendously... Valeri, Danny Boy, Christian78, just to name a few).

To be fair, as long as there is nothing physical (besides hearing loss) causing tinnitus, the brain is exactly what seems logical to target. By now it's pretty much ruled that tinnitus does come from the brain in one way or another and not so much the ears. But if hearing loss is the cause, it seems logical that reversing that should also fix the tinnitus (as tinnitus often is a sign of something being wrong, targeting whatever is wrong should hopefully reduce or fix the issue).

As to answer your specific reply to me earlier, I don't know where my tinnitus comes from but it may very well be some kind of clogging issue OR my neck, in which case targeting the brain wouldn't work, I think. I'm working hard to fix my issues but I'm not improving at all.

 

[dan]

I've had tinnitus for 28 years (with extreme worsening 2 years ago) and nothing has ever improved it.

Lenire has been the only treatment to have a positive impact.
So to call it a scam is a bit excessive.

Perhaps I was a bit harsh.

 

[JohnDoe8776059]

Everytime I think about 80's music, martial arts, the first few years out of highschool, nature reserves, fishing or anything to do with a rich quality of life experience I get an impulsive urge to end my life since everything is ruined.

I think people with horrifying health problems know this part of human history is a dark scary time to be alive.

I've definitely had thoughts like this before. It makes me feel worse when I think that I alone caused my own tinnitus out of impulsive decisions. Just waiting for those phase 2 results at the end of September.

 

[PeteJ]

What I meant was that doing research requires zoning in on a small fraction of the total picture, though I would argue the best researchers never lose sight of the global picture.

I just don't see where all these blanket statements about therapists and the psychological field come from as I'm sure you've never tried something like CBT. I somewhat understand your anger for not having a cure. Find me anyone who wouldn't be happy with a cure for tinnitus or hyperacusis, right?
The polarization between the field of the mind and that of the body like you represent it just isn't something I see in real life.

You have no clue about what you're talking about.

 

[PeteJ]

Perhaps I was a bit harsh.

I still don't call it effective if it only helps a really small percentage of people who have tinnitus. The human population is, what, 7.8 billion people? Out of that, how many have tinnitus?

If Lenire was helping 99.9% of tinnitus sufferers, you'd hear about it. Since tinnitus is a physical condition, I think the inner ear regeneration treatments sound more promising. But, I am skeptical about that too. But, at least, the science behind it (of which I have limited knowledge) *sounds* good.

 

[PeteJ]

To be fair, as long as there is nothing physical (besides hearing loss) causing tinnitus, the brain is exactly what seems logical to target. By now it's pretty much ruled that tinnitus does come from the brain in one way or another and not so much the ears. But if hearing loss is the cause, it seems logical that reversing that should also fix the tinnitus (as tinnitus often is a sign of something being wrong, targeting whatever is wrong should hopefully reduce or fix the issue).

As to answer your specific reply to me earlier, I don't know where my tinnitus comes from but it may very well be some kind of clogging issue OR my neck, in which case targeting the brain wouldn't work, I think. I'm working hard to fix my issues but I'm not improving at all.

It might be based in the brain but it's a result of hearing loss and/or damage in the ear(s). Isn't it? Can this be debated at all? I was under the impression it can't.

I don't think there is any other injury to the body in which the brain 'malfunctions' like this because of the injury. Producing phantom sounds in your head or ears is unique.

A normal person will have tinnitus and ringing in the ears after loud, excessive noise. Concerts and loud clubs can cause it but for the normal person, without significant damage it goes away. But, for the chronic tinnitus sufferer, it doesn't. What would experts and researchers say about this?

What does the inner ear and brain look like in the normal person compared to the chronic tinnitus sufferer?

People also have different degrees and severities of tinnitus. People also have hyperacusis, noxacusis and ear pain on top of tinnitus or in various cases, it's worse than their tinnitus. How does all that factor in?

 

[Bartoli]

You have no clue about what you're talking about.

What things have you tried so far Pete? All I can see is you telling over and over what symptoms you have, only to shoot off every piece of well-meant advice that is given to you.

 

[Zugzug]

What I meant was that doing research requires zoning in on a small fraction of the total picture, though I would argue the best researchers never lose sight of the global picture.

I just don't see where all these blanket statements about therapists and the psychological field come from as I'm sure you've never tried something like CBT. I somewhat understand your anger for not having a cure. Find me anyone who wouldn't be happy with a cure for tinnitus or hyperacusis, right?
The polarization between the field of the mind and that of the body like you represent it just isn't something I see in real life.

I think a lot more of it is about the analysis of progress. CBT is a wonderful thing -- I've done it in the past and I'm doing it right now. But, it has the following going for it:

Tons of guides for doing it yourself for free if you have the discipline for learning more about it. Sure, a professional would be better in many cases, but the theory of mindfulness, ERP, etc. is not something that every day people can't do after reading a few books. How do I know this? Years ago, I had an OCD flare up so I bought books on the topic and started doing the exercises. I went and saw a therapist and she basically confirmed that I was doing it correctly. She had some good recommendations, but at a point, I could stop the appointments because I knew what I was doing.

The above is utterly untrue for biomedicine. Labs, expensive equipment, materials, etc. are required. Hence, by advocating for CBT spending for chronic illness, you are basically throwing all of the money at improving a self-guided treatment by 5%, and ignoring biomedical treatments that could improve the person's condition by 30%+, depending on how good the treatment is.

CBT for chronic illness should be something that everyone does privately, but it doesn't make much sense to advocate for it when it has a firm ceiling. On the other hand, it should be advocated for when it comes to mental illness, as people with mental illness deserve the gains from psychological research like anyone else.

It's flatly ridiculous that chronic illness sufferers receive the shaming of being "anti-psychology." No one ever says this when people are looking for cancer cures. The people who think psychology fixes it right up probably have never suffered from a physical illness enough to know its limitations.

 

[Bartoli]

I think a lot more of it is about the analysis of progress. CBT is a wonderful thing -- I've done it in the past and I'm doing it right now. But, it has the following going for it:

Tons of guides for doing it yourself for free if you have the discipline for learning more about it. Sure, a professional would be better in many cases, but the theory of mindfulness, ERP, etc. is not something that every day people can't do after reading a few books. How do I know this? Years ago, I had an OCD flare up so I bought books on the topic and started doing the exercises. I went and saw a therapist and she basically confirmed that I was doing it correctly. She had some good recommendations, but at a point, I could stop the appointments because I knew what I was doing.

The above is utterly untrue for biomedicine. Labs, expensive equipment, materials, etc. are required. Hence, by advocating for CBT spending for chronic illness, you are basically throwing all of the money at improving a self-guided treatment by 5%, and ignoring biomedical treatments that could improve the person's condition by 30%+, depending on how good the treatment is.

CBT for chronic illness should be something that everyone does privately, but it doesn't make much sense to advocate for it when it has a firm ceiling. On the other hand, it should be advocated for when it comes to mental illness, as people with mental illness deserve the gains from psychological research like anyone else.

It's flatly ridiculous that chronic illness sufferers receive the shaming of being "anti-psychology." No one ever says this when people are looking for cancer cures. The people who think psychology fixes it right up probably have never suffered from a physical illness enough to know its limitations.

You raise some very good points. To be clear on the matter, I'm not a staunch defender of psychological treatments but they probably don't deserve the hate they're getting. I agree no further money needs to be spent on the research of CBT effectiveness, but it's good to have something to last some of us while the cure is hopefully in the making.

As for self-guided CBT, I don't know if everyone can do that. As you say one requires the discipline and people that are suffering from debilitating tinnitus probably need extra help.

As for the actual practice of CBT eating away at the research budget, I can only hope the government gets the memo that it can cut its losses by funding An actual cure. People have been saying for years the American Army is paying loads of money to vets with tinnitus, and it can stop paying out 10% disability once a cure is found, but honestly I don't see much initiative from that corner.

 

[HootOwl]

What I meant was that doing research requires zoning in on a small fraction of the total picture, though I would argue the best researchers never lose sight of the global picture.

The problem is for a lot of us there is no "global" or "bigger" picture. Our mental distress is a direct result of the physical/biological damage. Once the damage is repaired or the symptoms alleviated the mental despair evaporates.

Let me share a personal example. About 4 years ago my friends girlfriend thought it would be oh so hilarious to squeeze my left hand very hard, which left me with soft tissue and nerve damage in the thumb joint.

This caused me to have horrible, searing pain radiating upwards from my fingers and wrist at all times. Every half second there it would be, zapping away. I tried a splint and after every doctor I saw said there was no underlying damage so I said fuck it, and tried to live with it.

It was honestly (outside of what I'm experiencing now) one of the worst years of my life. I had no reprieve - the pain was searing when I drove to work, when I was watching movies on my laptop, and especially at night when trying to sleep. I couldn't even turn a doorknob with that hand it hurt so bad.

After a year of this I was at the point where I was seriously considering just going on painkillers for the rest of my life. No amount of CBT or distraction could stop me from being utterly exhausted by the pain, and believe me I tried.

Then I hit a lucky break. One morning I woke up and the pain was a little less. Then a month went by and it was about a quarter less. And a few more months and it was down by half. Suddenly I could sleep again, and watch movies, and drive without the shooting pain!

I cannot overstate how my quality of life started to improve drastically, and the improvement was directly proportional to how much the pain was diminishing.

After about another 6 months, the pain was gone and hasn't returned (unless I overuse the thumb but I try to be very careful about it) and all I'm left with is kind of an odd "heaviness" in the joint that is annoying, but perfectly liveable.

If a "narrow" picture researcher had said, hey we have this pill that can save you that year and half of hell I would have taken it in a heartbeat. I don't need that researcher to care about my mental state or get bogged down by a bigger picture. I also don't need psychiatry to explain to me what I already know - ie: I feel pretty damn terrible when I'm in pain and I should try to cope as best I can because what else can you do?

I'm happy that in the biomedical sciences they're focusing on the underlying damage, because ultimately that's what needs fixing for many of us suffering from all sorts of chronic conditions, pain or otherwise.

 

[Zugzug]

The problem is for a lot of us there is no "global" or "bigger" picture. Our mental distress is a direct result of the physical/biological damage. Once the damage is repaired or the symptoms alleviated the mental despair evaporates.

Let me share a personal example. About 4 years ago my friends girlfriend thought it would be oh so hilarious to squeeze my left hand very hard, which left me with soft tissue and nerve damage in the thumb joint.

This caused me to have horrible, searing pain radiating upwards from my fingers and wrist at all times. Every half second there it would be, zapping away. I tried a splint and after every doctor I saw said there was no underlying damage so I said fuck it, and tried to live with it.

It was honestly (outside of what I'm experiencing now) one of the worst years of my life. I had no reprieve - the pain was searing when I drove to work, when I was watching movies on my laptop, and especially at night when trying to sleep. I couldn't even turn a doorknob with that hand it hurt so bad.

After a year of this I was at the point where I was seriously considering just going on painkillers for the rest of my life. No amount of CBT or distraction could stop me from being utterly exhausted by the pain, and believe me I tried.

Then I hit a lucky break. One morning I woke up and the pain was a little less. Then a month went by and it was about a quarter less. And a few more months and it was down by half. Suddenly I could sleep again, and watch movies, and drive without the shooting pain!

I cannot overstate how my quality of life started to improve drastically, and the improvement was directly proportional to how much the pain was diminishing.

After about another 6 months, the pain was gone and hasn't returned (unless I overuse the thumb but I try to be very careful about it) and all I'm left with is kind of an odd "heaviness" in the joint that is annoying, but perfectly liveable.

If a "narrow" picture researcher had said, hey we have this pill that can save you that year and half of hell I would have taken it in a heartbeat. I don't need that researcher to care about my mental state or get bogged down by a bigger picture. I also don't need psychiatry to explain to me what I already know - ie: I feel pretty damn terrible when I'm in pain and I should try to cope as best I can because what else can you do?

I'm happy that in the biomedical sciences they're focusing on the underlying damage, because ultimately that's what needs fixing for many of us suffering from all sorts of chronic conditions, pain or otherwise.

Maybe I am naive or optimistic about this, but I actually think chronic illness sufferers would do more CBT if they felt like the actual problem was being talked about correctly and it was truly out of their hands.

As someone who has done it, a massive part of mindfulness is "letting the problem be." There is an absurd amount of medical privilege that goes into this saying. I can honestly say, and it's been a year with debilitating hyperacusis, the research that I have done on my own medical problem has helped me. There are supplements that I take, and in amounts I have researched, that have aided some of my recovery periods. None of this would be possible if I didn't critically think about my problem and try to solve it.

This is not the same as OCD, where the brain is telling you to double check that you washed your hands thoroughly enough, and the correct treatment is to let this thought sit, endure the anxiety, and not act upon it.

 

[dan]

Let me share a personal example. About 4 years ago my friends girlfriend thought it would be oh so hilarious to squeeze my left hand very hard, which left me with soft tissue and nerve damage in the thumb joint.

Moral to story, never let anybody touch you with any sort of force, for fun or experimentation.
When I was 18, I got dehydrated and got a bad headache, my acquaintance offered to relieve my pain by pressing hard on my temples. Next day I developed the non stop shooting pain there, that lasted a year.

 

[ThomasC]

In this particular case it's about chronic pain treatment and in an attempt to lower opioid dependency. I can imagine the need for an alternative that is available now, so I understand the bias towards CBT. It seems US doctors are happy to prescribe these kinds of drugs that are obviously not a long term solution, create dependency and come with a host of side effects and problems. I don't know if CBT had been previously researched in this field, so I'm not familiar with the context. Once the efficacy (or not) is established it's reasonable to not go further down the same route and investing more money into researching CBT.

Opioids for chronic pain (or in a sort of analogy, benzos for tinnitus) never really came across for me as a long-term solution. They may have their use, but you don't have to browse this forum for long to find plenty of reasons not to take them. For me, it's covering up and immediate problem with a delayed problem, essentially making you have to deal with both tinnitus and benzo withdrawal at some point in the future.

While not in proportion, the money going into researching peripheral neuropathy isn't going to yield results anytime soon so it makes sense the majority of money was put where it was needed, as in, a more accessible solution for now...

Still, none of this is about tinnitus really. I still stand by my point and to my knowledge there is no major study into CBT for tinnitus ongoing at the moment. It has been researched, and the data at least suggests it's effective, as opposed to shining a laser in your ear. It's not the solution we dream of, but we also need real treatments now.

Personally I find the money that was put into the research of CBT for tinnitus was more useful than some study about coffee and tinnitus...
The thing with studies is: until you research something, there's no way of knowing what the results will be, and even ascertaining that something is not effective will ultimately lead us closer to a cure... in hindsight some studies may seem stupid, but at least someone made sure it doesn't work. No researcher ever deliberately wants his research to lead to a dead end, but these outnumber the useful studies probably by a 100 to 1.

What have we got?

Benzos: instead of 1 problem, you'll soon have 2.

TRT: an expensive solution, for some.

CBT: proven to help with tinnitus annoyance, not the tinnitus itself. Not what we want, but it's what we got now.

Levo/Desyncra/Lenire: see TRT

rTMS: risky business. Let's zap your brain, see what happens.

Trobalt: you can't find any. If you do, better not touch it or your eyes go blue. No, not like Sinatra.

FX-322: can't come soon enough.

Audion: dud.

I'm currently doing CBT/ACT. At least it keeps me occupied while someone, somewhere tinkers on a cure. And you know, maybe it might help. I haven't got high hopes but I don't want to jeopardize it by telling it won't before I got started.

Lenire is different than TRT. I guess it doesn't work for many people because of the settings. There is a large range of values for the signal timing. If you have some skills in programming and in computer engineering, you could design your own device and find the right calibration.
Or more safely, waiting for other bimodal and electrical devices. We shouldn't just focus on regenerative drugs.

 

[HootOwl]

Moral to story, never let anybody touch you with any sort of force, for fun or experimentation.
When I was 18, I got dehydrated and got a bad headache, my acquaintance offered to relieve my pain by pressing hard on my temples. Next day I developed the non stop shooting pain there, that lasted a year.

Believe me, I had no idea that's what she'd do. It was supposed to be a handshake and only lasted probably 2-3 seconds and I was already saying "LET GO THAT HURTS" about a second in and trying to get her hand off me while she laughed.

I'm sorry about your experience, and completely agree. You never know how things can wrong instantly. But I'm glad it went away for you as well.

 

[Contrast]

I agree no further money needs to be spent on the research of CBT effectiveness

Tell the VA and NIH that.

 

[Bartoli]

Lenire is different than TRT. I guess it doesn't work for many people because of the settings. There is a large range of values for the signal timing. If you have some skills in programming and in computer engineering, you could design your own device and find the right calibration.
Or more safely, waiting for other bimodal and electrical devices. We shouldn't just focus on regenerative drugs.

If a bunch of boffins can't get it right every single time, I'm not having a go at it myself. Too afraid to make it worse. But I agree, don't write off neuromodulation just yet. Even magnetical and electrical stimulation still hold potential with different sites of stimulation and settings...

 

[Bartoli]

Tell the VA and NIH that.

Are you?

 

[bobvann]

Believe me, I had no idea that's what she'd do. It was supposed to be a handshake and only lasted probably 2-3 seconds and I was already saying "LET GO THAT HURTS" about a second in and trying to get her hand off me while she laughed.

I'm sorry about your experience, and completely agree. You never know how things can wrong instantly. But I'm glad it went away for you as well.

A mean beeaatch never met any of those in my life

 

[Contrast]

In most areas of business consumers vote with their money, companies give surveys, and consumers influence the market just by buying things.

In medicine it's nothing like that. The Academics World™ doesn't do anything unless Governments pay them to do. I don't think there is a proper way to voice feed back for disease advocacy. Until something like that becomes simple or straight forward, very little serious progress will be made. It's just recently that the NIH is taking patient advocacy a bit more seriously. It's just way to late.

If this happened three decades ago the biological sciences would have been much more advance. Previously generations did NOTHING. That's why we are in this mess. We are not the first generation of complainers. We are just a grass roots.

What Joyce and Bryan are doing is a strong step in the right direction, what the visual snow community and chronic fatigue syndrome community are doing is strong steps in the right direction. But some health problems have non of this. They don't have grass roots movements or anything.

 

[PeteJ]

What things have you tried so far Pete? All I can see is you telling over and over what symptoms you have, only to shoot off every piece of well-meant advice that is given to you.

Because my tinnitus is TOO LOUD. I think those who say that don't have loud tinnitus.

 

[PeteJ]

I just want to thank the people who "liked" my posts. I was just trying to explain how bad it is for me even though it's pointless. I can't explain it in words.

I don't know how anyone can deal with tinnitus that is so loud, it's like an external noise of tones that never stops. Actually, I have fluctuation of 8/10 (severity) and 11/10 ( right now).

It's frequency 10/10 when I want to sleep lately and I don't know why. I read that you don't get into a deep sleep when you have (severe?) tinnitus. They're so right. That's another major negative and part of the suffering many people don't consider. I am tired of people telling me I "didn't take advice" as if they know what my tinnitus is like and what I should be able to do. I am not dead yet. What more do you want?

 

[dan]

it's like an external noise of tones that never stops.

Are you saying you don't perceive it in your ears/head???

 

[PeteJ]

Are you saying you don't perceive it in your ears/head???

I do. It's just so loud, it's as if it's so loud, it sounds like it's external too but obviously, I am the only one who hears it.

There are some musicians and audio engineers here who could probably describe it better than I can. I am pretty sure there's more than one tone. I can distinguish between them. But, they blend in together still. The pitch is really high with all of them. It's torture.