Please Don't Say There's No Cure for Tinnitus

[Greg Sacramento]

Severe tinnitus:
1. Often from noise or medication. I had mentioned a biotech sound engineer friend that used recorded opposite frequency range sound for former musicians - played at whisper level - no headphones - tinnitus reduction average is 20%.

2. Physical tinnitus. Many causes, including neck and infection. Tinnitus can be reduced at times and sometimes cured. I try to assist this group - some reductions and some cures.

3. Pulsatile tinnitus. Developing after having severe tinnitus often involves hypertension - aortic system - heart - veins - arteries (carotids) and sometimes affects eyes. Can be treatable.

 

[DaveFromChicago]

@DaveFromChicago makes a valid point. I find nothing worse than toxic positivity or gaslighting of severe/catastrophic sufferers of being "toxic".

If you want happy la-la land and waves of positivity then maybe you really shouldn't be on this forum, even though there are some specimens here who preach toxic positivity and worship big J.

I have no idea why these ardent proponents of Jastreboffian / TRT / Habituation want to argue about the "inappropriateness", for example, of a report on the tragic consequences of Brian P?

Thanks for the supportive comment.

A good deal of my annoyance yesterday was from a Javelin missile level tinnitus spike that compelled me to get in my car, park it in my garage, shut the door, have the windows rolled up, and scream until my voice was hoarse.

I used to theorize about what real madness was, and now I know. If I had to cite one reason for this, it would be the realization that there is virtually nothing I can do to neutralize this spike by even 5% (or, as one lady on this forum said, "tinnitus does whatever the hell it wants to").

I even momentarily thought about turning on the ignition and rolling down the car windows; a paramedic I know said that carbon monoxide will knock you out within seconds.

The difficulty lay in the fact that, being Saturday, there were many people about and someone would have realized what I was doing (my next door neighbor, for example, has a Doctorate in Nursing.)

I eventually managed to extricate myself from the car and go into the house. To cheer myself up I played the Door's "This Is The End".

Just kidding; perhaps the CBT'ers would have recommended Leslie Gore's "Sunshine Lollipops" or some other inane nostrum.

 

[GregCA]

I had mentioned a biotech sound engineer friend that used recorded opposite frequency range sound for former musicians

What is "opposite frequency range sound"?

 

[DaveFromChicago]

A question to the proponents of habituation:

Recently I read of a very good definition of depression: It is the inability to
formulate a future.

How is formulating a future feasible with this condition?

 

[Greg Sacramento]

What is "opposite frequency range sound"?

@GregCA, they assist when tinnitus was caused by a high pitch piercing tone such as from a trumpet or from certain machinery. The idea is to use reverse octave equivalence and sound measures of which caused tinnitus. Octave mapping to the auditory thalamus needs to be understood. A modified CD of a soft bubbling brook is often used. Patient listens to it at whisper level and not by headphones. This isn't considered notched sound therapy. Tinnitus sound is not lowered much, but perception of tinnitus is.

 

[dan]

A question to the proponents of habituation:

Recently I read of a very good definition of depression: It is the inability to
formulate a future.

How is formulating a future feasible with this condition?

I was habituated with severe tinnitus (heard it everywhere) and made future plans.

Keyword "was"...

 

[dan]

I healed completely from severe tinnitus after two years.

I lived in lovely silence for 3.5 years until November 2021 when I took the Pfizer jab. Now it's back at twice the volume along with pulsatile tinnitus.

I warned people here against vaccination, but I guess nobody listens.

 

[tpj]

I warned people here against vaccination, but I guess nobody listens.

Hi Dan, many people only got vaccinated because of mandates to keep their jobs. And there were people whose tinnitus wasn't affected.

 

[dan]

Hi Dan, many people only got vaccinated because of mandates to keep their jobs. And there were people whose tinnitus wasn't affected.

If they told you to play Russian roulette with your foot to keep your job, would you?

 

[tpj]

If they told you to play Russian roulette with your foot to keep your job, would you?

We never should have been put in that position to begin with.

 

[blamingeverything]

If they told you to play Russian roulette with your foot to keep your job, would you?

Who's to say getting COVID-19 wouldn't have the same effect though? Because it sure seems to be the case.

 

[volsung37]

I warned people here against vaccination, but I guess nobody listens.

Unfortunately when I healed, the last place I wanted to be was on a tinnitus forum. I do wish I had called in from time to time and had seen the threads here on vaccination.

 

[Lane]

I lived in lovely silence for 3.5 years until November 2021 when I took the Pfizer jab. Now it's back at twice the volume along with pulsatile tinnitus.

Hi @volsung37 -- Really sorry to hear this has happened. I believe some on this forum have reported that an initial spike after vaccination eventually subsided. I sincerely hope that's the case for you, and you can regain your silence.

 

[ZFire]

Hi Dan, many people only got vaccinated because of mandates to keep their jobs. And there were people whose tinnitus wasn't affected.

We never should have been put in that position to begin with.

If they told you to play Russian roulette with your foot to keep your job, would you?

I think you know what I'd say.

And I wouldn't want to work for a company that didn't respect bodily autonomy anyway.

You'll find something better, trust.

In light of what has transpired with the Omicron Variant, a mandatory vaccine policy just doesn't make sense anymore:

1. The vaccine does not protect people from getting COVID-19
2. The vaccine does not stop people from giving it to other people
3. Fails to include unvaccinated people who were already infected by the virus

The vaccine may very well lessen the severity of COVID-19 symptoms, but you're only protecting yourself and not others. You can still very much pass it on to someone else vaccinated or not... doesn't matter. As a matter of fact, I got COVID-19 from someone who was vaccinated and I was the careful one being home bound and all during the Omicron outbreak.

At this point, it all comes down to personal choice. If you feel like you need to protect yourself, YOU get the vaccine. DON'T TELL ME I HAVE TO BE A PART OF IT, WHEN YOU'RE NEVER GOING TO BE PROTECTED FROM ME ANYWAY. PLUS I WAS ALREADY INFECTED.

Sorry I'm a little pissed off... Missed out on a new job offering because of a mandate.

 

[dan]

In light of what has transpired with the Omicron Variant, a mandatory vaccine policy just doesn't make sense anymore:

1. The vaccine does not protect people from getting COVID-19
2. The vaccine does not stop people from giving it to other people
3. Fails to include unvaccinated people who were already infected by the virus

The vaccine may very well lessen the severity of COVID-19 symptoms, but you're only protecting yourself and not others. You can still very much pass it on to someone else vaccinated or not... doesn't matter. As a matter of fact, I got COVID-19 from someone who was vaccinated and I was the careful one being home bound and all during the Omicron outbreak.

At this point, it all comes down to personal choice. If you feel like you need to protect yourself, YOU get the vaccine. DON'T TELL ME I HAVE TO BE A PART OF IT, WHEN YOU'RE NEVER GOING TO BE PROTECTED FROM ME ANYWAY. PLUS I WAS ALREADY INFECTED.

Sorry I'm a little pissed off... Missed out on a new job offering because of a mandate.

It doesn't stop transmission, but the powers that be were using the excuse that it 'prevents hospitals from being overwhelmed' with severe cases. Still this is not an excuse to mandate vaccines, because nowhere during the pandemic and even to this day, did the government increase hospital beds, doctors, nurses, etc. On the contrary, they fired a shitload of medical professionals who refused to vaccinate.

 

[Marshall]

Who's to say getting COVID-19 wouldn't have the same effect though? Because it sure seems to be the case.

COVID-19 started mine, plus I'm vaxed so I don't know.

 

[dan]

I have had tinnitus that I "heard everywhere", but "hearing it" and having your head exploding from the sheer volume and number of tones are two different things.

Winner!

 

[Alue]

Cancer outcomes have also improved remarkably in recent years. I can't find the tweet by an oncologist I follow but he said something to effect of most of his patient panel consists of those who're getting cancer a second time, rather than most passing away on the first instance.

While I agree with Greg Sacramento's sentiment, it's still like saying there will never be a single one cure fix all for cancer, which is true. I feel the same with tinnitus. While there may be treatments in the future and in some cases cures for some people there are many different types of tinnitus with different etiologies and a singular cure that works for everyone seems very unlikely to me.

 

[InfiniteLoop]

There will be a cure for tinnitus, but not in our lifetimes. For practical purposes, that is equivalent to saying that there is no cure for tinnitus. Saying otherwise is just fooling yourself, and that might be OK after all. Work on your habituation...

 

[Jerad]

There will be a cure for tinnitus, but not in our lifetimes. For practical purposes, that is equivalent to saying that there is no cure for tinnitus. Saying otherwise is just fooling yourself, and that might be OK after all. Work on your habituation...

I think a lot of people just want a treatment or a medication that will help significantly. They aren't looking for a total cure. They just wanna be able to breathe again.

I, for instance, have several tinnitus tones. There's only one, though, that drives me mad. It's the one that sounds and feels like electricity shocking me all the time. If I could just quiet that one tone significantly, I'd be okay, even with the vibrating hum, dentist drill, and jet engines that oscillate.

The difference is that those tones don't trigger painful sensations, but my electrical one does. It feels like torture. I have severe hyperacusis, too. If I could get rid of that bad tone, I'd feel like habituation was plausible or that I could just learn to live with the noise.

Do you think any type of treatment will come soon to help quiet things? Not a cure, but a treatment.

 

[dan]

Do you think any type of treatment will come soon to help quiet things? Not a cure, but a treatment.

No.

 

[dan]

Work on your habituation...

You don't "work" on habituation. Habituation just happens.

 

[Jerad]

No.

@dan, what about DBS and XEN-1101? Those and some others have shown promise. Why do you feel that way? Is it because you think there's no treatment coming for you or that there's no treatment coming for anyone? I remember reading that you weren't able to do Trobalt because of its contraindications with heart issues. So just trying to see your thoughts. The DBS trial, for example, showed significant relief for most of the people who underwent the procedure.

 

[Greg Sacramento]

Loud noise and some medications affect the middle ear and that's an issue for many regulars here.

For those whose tinnitus was caused by physical association - reduction and sometimes a cure can happen.

For children often tinnitus is temporary caused by an illness with inflammation or infection.

 

[dan]

@dan, what about DBS and XEN-1101? Those and some others have shown promise. Why do you feel that way? Is it because you think there's no treatment coming for you or that there's no treatment coming for anyone? I remember reading that you weren't able to do Trobalt because of its contraindications with heart issues. So just trying to see your thoughts. The DBS trial, for example, showed significant relief for most of the people who underwent the procedure.

Deep Brain Stimulation? Isn't that where they open up your skull and prod you with an electrode?

Trobalt is off the market for that same reason that it killed @Danny Boy by stopping his heart in his sleep.

Also, Trobalt wasn't a panacea for tinnitus. If it were, pharma would be reformulating it specifically for tinnitus because the market is huge for it. There are more tinnitus sufferers than there are epilepsy sufferers.

 

[Jerad]

Deep Brain Stimulation? Isn't that where they open up your skull and prod you with an electrode?

Trobalt is off the market for that same reason that it killed @Danny Boy by stopping his heart in his sleep.

Also, Trobalt wasn't a panacea for tinnitus. If it were, pharma would be reformulating it specifically for tinnitus because the market is huge for it. There are more tinnitus sufferers than there are epilepsy sufferers.

Yeah, DBS is pretty invasive and serious surgery, but if you're debilitated like someone w/ Parkinson's, I think it makes sense to go that route. I mean, I'd definitely consider it. My tinnitus is really bad and if I knew DBS would help a lot, sure I'd do it because my quality-of-life is so low now.

@Danny Boy said Trobalt took his tinnitus from severe to mild, and others reported positive outcomes, too, like @Juan Carlos. XEN-1101 is supposed to be a very similar drug, but without all the severe side effects. So it could be a great drug for tinnitus. I hope it is.

You'd think that big pharma would be more eager to get a good tinnitus treatment in production, but I dunno why they aren't. So many companies that are trying to make it happen just lack funding. Like you said, tinnitus is so common that it'd be a popular drug if it existed. Even people with mild tinnitus would want it. Everyone hates their tinnitus, at least initially. So a lot of people would jump at the chance of getting rid of it.

Some other treatments have shown promise, like Naltrexone, but experiences are very individual. @Johnny Karate had his tinnitus go from bad to much, much better using it, and it continues to be that way for him. And we got Elon Musk's endeavors to conquer tinnitus to consider. So I hope there's hope. And have you been following @BrysonKingMe in South Korea? Those treatments hold potential to help. Not looking for cures, really. Just looking for good improvement to make life reasonable again. There's gotta be hope, man, come on. lol We can't be stuck in this rut forever. They have good or decent treatments for Parkinson's, Alzheimer's, AIDS, and some of the worst conditions out there. I mean, I know tinnitus is evil, but I'm hoping it's not invincible. Unless you think it's cooked-up in the fiery pits of hell and is untouchable. I dunno.

 

[dan]

Yeah, DBS is pretty invasive and serious surgery, but if you're debilitated like someone w/ Parkinson's, I think it makes sense to go that route. I mean, I'd definitely consider it. My tinnitus is really bad and if I knew DBS would help a lot, sure I'd do it because my quality-of-life is so low now.

@Danny Boy said Trobalt took his tinnitus from severe to mild, and others reported positive outcomes, too, like @Juan Carlos. XEN-1101 is supposed to be a very similar drug, but without all the severe side effects. So it could be a great drug for tinnitus. I hope it is.

You'd think that big pharma would be more eager to get a good tinnitus treatment in production, but I dunno why they aren't. So many companies that are trying to make it happen just lack funding. Like you said, tinnitus is so common that it'd be a popular drug if it existed. Even people with mild tinnitus would want it. Everyone hates their tinnitus, at least initially. So a lot of people would jump at the chance of getting rid of it.

Some other treatments have shown promise, like Naltrexone, but experiences are very individual. @Johnny Karate had his tinnitus go from bad to much, much better using it, and it continues to be that way for him. And we got Elon Musk's endeavors to conquer tinnitus to consider. So I hope there's hope. And have you been following @BrysonKingMe in South Korea? Those treatments hold potential to help. Not looking for cures, really. Just looking for good improvement to make life reasonable again. There's gotta be hope, man, come on. lol We can't be stuck in this rut forever. They have good or decent treatments for Parkinson's, Alzheimer's, AIDS, and some of the worst conditions out there. I mean, I know tinnitus is evil, but I'm hoping it's not invincible. Unless you think it's cooked-up in the fiery pits of hell and is untouchable. I dunno.

Well said, but after more than a decade with very severe tinnitus, I am leaning towards the fiery pits of hell likelihood lol.

 

[fishbone]

As I read this thread, I 100% can identify with the posts made. My posts are very positive and try to be uplifting but the tinnitus has made life a true chore, even for me at times. I am nearing my 35th year and at one time, it was very mild and now it's beyond loud and maddening.

What I learned early on, when I had mild tinnitus, has helped me to this very day. I learned how to cope when my tinnitus was not even noticeable, it was very tough for me when I first got tinnitus. I have read so so many posts on this forum from those that just got tinnitus. I was just like them, so I'd answer their questions and try to help them.

Those early foundations, in my tinnitus journey keep me going today, even when the tinnitus is many times worse. My life in regards to tinnitus was really bad back then.

My perception of it and many other things was not at its best either back then.

I used to try to explain my situation, many did not listen. My hope comes from doing what I need to do in my life to move forward.

My hope comes from waking up and taking care of what I need to do for the day.

My hope comes from accepting my reality and seeing it for what it truly is.

My tinnitus is so much worse now than before but my perception is a lot better.

Tinnitus can be quite difficult, it can. For some like myself, it is heard over all things and it cannot fade away.

It remains aggressively loud all day, it's the fact I face and accept.

My reaction or non-reaction is my hope towards it.

I am proud of Greg, I have always supported him and many others here on this forum.

Even as bad as the ringing is, I still have hope and that will always remain.

 

[dan]

My hope comes from accepting my reality and seeing it for what it truly is.

The reality is tinnitus has diminished quality of life, but there is no choice but to keep breathing and live for another day.

 

[Greg Sacramento]

@fishbone, I think about you every day.

Your thoughts above are so helpful to me - thank you.