I Have 12 Months to Recover from Tinnitus: What Treatments Can I Try? Budget $450,000.

[morgothaod]

@GBB

The sooner you quit trying to fight tinnitus; the better off you'll be. Most of us were like you and tried all sorts of things and just ended up wasting money. I think you'll be in a better place mentally if you can reduce the amount of time that you think about your tinnitus. It is not easy and you will have bad days but distracting yourself through activities that you enjoy does help.

Buy a fan that is noisy to help mask the tinnitus. I find keeping music on is a good distraction as well.

There are some drugs going through some trials that may help us in the future. Hang in there.

You should also donate a big chunk of money to Tinnitus Talk, @Hazel and @Markku deserve the support for their hard work.

 

[Juan]

Honestly, I appreciate your advice. I'm the type of person who needs to try everything to feel assured I did what I could. If I can induce a placebo effect, I don't mind the cost. Before I order however, I'm going to review to see if anyone had adverse effects from a laser. If it is neutral at worst to any incremental good impact, I'll consider it worthwhile to try, that's just my perspective.

Take into account that if a 800 USD laser cured tinnitus, then all clinics in the world, all ENTs, all hospitals would have it... and you know what? No respectable hospital would offer this "treatment" because it is just a scam.

 

[Juan]

I am 28 years old and I have 12 months to recover to take a high power job in NYC that will pay me $100k more than my current role. Failing that I'll probably move to Florida, buy a tiny house, and eat/drug myself into an early grave. Already taking all the supplements and tried ADs for 7 weeks.

What are some plausible YOLO therapies I can try? Pretty much my whole future on the line. If I don't get better I'd rather burn out than live as the pathetic shell of a person I am now.

Tinnitus is bilateral and noise-induced, 7 weeks old. I will not habituate as tinnitus is too loud.

Budget: $~450k.

My advice would be not to take the job unless you know you can cope with it. If you are new to hearing problems, and tinnitus, your chances of recovery are better than when it gets chronic.

Stress plays a major role in these conditions, and also noise exposure, so you want to reduce those variables.

As for treatments, let me be brutally honest: there is nothing really effective. There are supplements and drugs that may produce temporary relief, and work for some people but not for others, or make you feel better for a week, and then things are as bad as always...

If your tinnitus is noise induced and recent you can give Prednisone or Deflazacort a go, to see if it helps...

 

[GBB]

Take into account that if a 800 USD laser cured tinnitus, then all clinics in the world, all ENTs, all hospitals would have it... and you know what? No respectable hospital would offer this "treatment" because it is just a scam.

I understand - maybe it will induce a placebo effect - maybe it will do nothing. I'd still like to try. It will be another datapoint for the community here in any case.

My advice would be not to take the job unless you know you can cope with it. If you are new to hearing problems, and tinnitus, your chances of recovery are better than when it gets chronic.

Stress plays a major role in these conditions, and also noise exposure, so you want to reduce those variables.

As for treatments, let me be brutally honest: there is nothing really effective. There are supplements and drugs that may produce temporary relief, and work for some people but not for others, or make you feel better for a week, and then things are as bad as always...

If your tinnitus is noise induced and recent you can give Prednisone or Deflazacort a go, to see if it helps...

Mine is noise induced, coming up on two months. I'm aware generally nothing reliably works. That being said I need to try - perhaps as part of the mourning process but also because my situation is juxtaposed against my dream job. I've already done a round of prednisone but appreciate the suggestion.

 

[Juan]

I've already done a round of prednisone but appreciate the suggestion.

For how long have you had prednisone? A long course lasts over a month...

 

[GBB]

For how long have you had prednisone? A long course lasts over a month...

I was on it for two weeks, although the dose was beneath what is recommended in clinical literature. I should have had 60 mg, but at most got 30 mg (even less in the second week which was spent tapering). I went to 4 different ENT and none would prescribe the full 60 mg, even when I insisted - one, the first ENT I saw, actually refused to prescribe any prednisone at all.

The intractability of the ENT community at large has been distressing to me to say the least...

 

[ginger_cat]

I am not being funny, but if I were you, I would try method promoted by Liam Boehm. He posts free advice to start with. It won't harm you to try. I know many people say he's a scammer, but if you have a year and are desperate to get better, why not to. Take care, I hope you will feel better

 

[rei]

Buy some FREQ shares and wait. My tinnitus started screaming 10 months ago, 4 months in i started getting used to it. I still hate it but my life is back to almost normal. If i had that much money I'd probably try to bribe someone at the Hough Ear Institute.

 

[Juan]

I was on it for two weeks, although the dose was beneath what is recommended in clinical literature. I should have had 60 mg, but at most got 30 mg (even less in the second week which was spent tapering). I went to 4 different ENT and none would prescribe the full 60 mg, even when I insisted - one, the first ENT I saw, actually refused to prescribe any prednisone at all.

The intractability of the ENT community at large has been distressing to me to say the least...

I would give Deflazacort a go... 30 mg, one pill a day for 10 days, is what I used to take. For me itworks better than Prednisone, although in theory Deflazacort is less powerful.

 

[GBB]

I would give Deflazacort a go... 30 mg, one pill a day for 10 days, is what I used to take. For me itworks better than Prednisone, although in theory Deflazacort is less powerful.

Thanks, I genuinely appreciate this and will try to get my hands on some ASAP.

 

[linearb]

Didn't Susan Shore publicize her timings? This maybe *does* seem like something someone with enough money could pay to recreate.

Yes, people have tried, I was briefly involved in a working group once, and someone on here made a device that they posted specs for and oscilloscope testing steps, but then I think they vanished.

It would certainly be possible to engineer this, the actual technology is relatively simple. Doing it safely requires a level of biomedical understanding I lack.

She reported no worsening (unlike Lenire) in her trials so far, correct?

In the trials, yes. The clinicians also told me that incorrect timing would be expected to make tinnitus worse, but that this should be a temporary effect.

When you say you think it worked, would you be willing to summarize your results in terms of impact and durability?

Generally it reduced my self-reported distress rating average from 6-7/10 to 2-3/10, and my self-reported volume rating from 4-6/10 to 2-3/10 as well.

This thread has a lot of info; I believe i did the trial in February-June of 2015 so my posts around that era should show it. Or maybe it was 2014?

 

[GBB]

Yes, people have tried, I was briefly involved in a working group once, and someone on here made a device that they posted specs for and oscilloscope testing steps, but then I think they vanished.

It would certainly be possible to engineer this, the actual technology is relatively simple. Doing it safely requires a level of biomedical understanding I lack.

In the trials, yes. The clinicians also told me that incorrect timing would be expected to make tinnitus worse, but that this should be a temporary effect.

Generally it reduced my self-reported distress rating average from 6-7/10 to 2-3/10, and my self-reported volume rating from 4-6/10 to 2-3/10 as well.

This thread has a lot of info; I believe i did the trial in February-June of 2015 so my posts around that era should show it. Or maybe it was 2014?

That's great honestly. It's just disheartening this took place so long ago and we are still sitting around waiting for it.

 

[GlennS]

Nothing but respect. I hope we all get some relief soon. I think you're well within your rights saying anyone else faced with the same crap would not have made it as far.
Also I read all of your comments in the voice of H Jon Benjamin.

I could only dream of being as charismatic as Archer. Archer is the only fictional character I know of who has tinnitus. I don't really write in his vernacular but I probably could if I tried.

"Tinnitus, you are a cruel mistress!"

 

[Watasha]

I am 28 years old and I have 12 months to recover to take a high power job in NYC that will pay me $100k more than my current role. Failing that I'll probably move to Florida, buy a tiny house, and eat/drug myself into an early grave. Already taking all the supplements and tried ADs for 7 weeks.

What are some plausible YOLO therapies I can try? Pretty much my whole future on the line. If I don't get better I'd rather burn out than live as the pathetic shell of a person I am now.

Tinnitus is bilateral and noise-induced, 7 weeks old. I will not habituate as tinnitus is too loud.

Budget: $~450k.

With a $450K budget, go the doctor rule out anything else. Then use a few thousand and work with Dr. Bruce Hubbard out of New York, habituation is possible with varying levels of tinnitus. It will get better with time believe it or not.

With the remaining $440K, start an endowment for tinnitus research, I am not even joking. Right now that's our best chance.

 

[GBB]

@GBB

The sooner you quit trying to fight tinnitus; the better off you'll be. Most of us were like you and tried all sorts of things and just ended up wasting money. I think you'll be in a better place mentally if you can reduce the amount of time that you think about your tinnitus. It is not easy and you will have bad days but distracting yourself through activities that you enjoy does help.

Buy a fan that is noisy to help mask the tinnitus. I find keeping music on is a good distraction as well.

There are some drugs going through some trials that may help us in the future. Hang in there.

I appreciate what you're saying but my tinnitus is reactive and unmaskable, playing a fan or music spikes it, and I get head pressure from something nerve related from hyperacusis. I will try everything I can before I simply "get used to it". Maybe that's a therapy.

With a $450K budget, go the doctor rule out anything else. Then use a few thousand and work with Dr. Bruce Hubbard out of New York, habituation is possible with varying levels of tinnitus. It will get better with time believe it or not.

With the remaining $440K, start an endowment for tinnitus research, I am not even joking. Right now that's our best chance.

Thanks, I'm 28 and that's my life savings, so not willing to cede it to the collective just yet, but I do intend to do some kind of giving once my health is a bit more stable.

 

[GBB]

Take your money, buy some stocks and bitcoin, wait a year, and you'll probably have more money and less tinnitus.

Already in index funds but thx.

 

[Zugzug]

The answers to this are all over the place (as they should be, since this is highly situational) so I will inject my perspective. I have severe, and importantly progressive, T and H, and it is caused by a disease that requires immunosuppressant medication. Naturally, I have a bias towards "figure it out" since my problem is not caused by a noise exposure. With this being said, there's no way $450k is going to solve this thing. I have spent many months researching T and H, trying every vitamin/supplement under the sun, trying sound therapy, multiple rounds of steroids, antidepressants, anticonvulsants, benzos, doxycycline (for possible lyme, don't try this). I have seen many doctors. I haven't tallied the costs, but it is safe to say it doesn't touch anywhere near the ballpark of $450k, and yet I feel exhausted with trying things.

On the other hand, that money is really important for the mental health side of this. It gives you a massive security blanket in case your disability and/or mental health problems progresses.

I recommend a hybrid approach. You have enough financial security to try things. Try all of the usual things to try with the understanding that it may not help.

Since your listed cause is from one-off things, you are likely in the same boat as most people on here. That is to say, give habituation a really serious try, reduce stress, reduce salt, increase sleep (may need help with this), and hold out for regenerative medicine. Although extremely shitty, there isn't much one can do for one-off things except give it time. I do recommend, however, finding a way to obtain prednisone instantly (within hours) if you do experience another trauma.

I do not recommend going for a high stress job, but again, I have a bias because I have a disease that is worsened by stress. If staying busy at work is your escape, then go for it. However, I think it's smarter to take advantage of your financial security and channel the extra time and less stress into hobbies. If you are a workaholic (I am), then find hobbies that are difficult.

 

[all to gain]

Some dubious types in your position would almost certainly try and give a gift to one or more of the drug companies currently trialling current and promising drugs for hearing loss and tinnitus.

Just saying...

 

[GBB]

The answers to this are all over the place (as they should be, since this is highly situational) so I will inject my perspective. I have severe, and importantly progressive, T and H, and it is caused by a disease that requires immunosuppressant medication. Naturally, I have a bias towards "figure it out" since my problem is not caused by a noise exposure. With this being said, there's no way $450k is going to solve this thing. I have spent many months researching T and H, trying every vitamin/supplement under the sun, trying sound therapy, multiple rounds of steroids, antidepressants, anticonvulsants, benzos, doxycycline (for possible lyme, don't try this). I have seen many doctors. I haven't tallied the costs, but it is safe to say it doesn't touch anywhere near the ballpark of $450k, and yet I feel exhausted with trying things.

On the other hand, that money is really important for the mental health side of this. It gives you a massive security blanket in case your disability and/or mental health problems progresses.

I recommend a hybrid approach. You have enough financial security to try things. Try all of the usual things to try with the understanding that it may not help.

Since your listed cause is from one-off things, you are likely in the same boat as most people on here. That is to say, give habituation a really serious try, reduce stress, reduce salt, increase sleep (may need help with this), and hold out for regenerative medicine. Although extremely shitty, there isn't much one can do for one-off things except give it time. I do recommend, however, finding a way to obtain prednisone instantly (within hours) if you do experience another trauma.

I do not recommend going for a high stress job, but again, I have a bias because I have a disease that is worsened by stress. If staying busy at work is your escape, then go for it. However, I think it's smarter to take advantage of your financial security and channel the extra time and less stress into hobbies. If you are a workaholic (I am), then find hobbies that are difficult.

That's totally fair. I just want to recover because this really is my dream job, think software engineer at Google but another industry. Therefore I'm just fielding any and all suggestions.

I appreciate most of of us are stuck hence why we have arrived here and remain here.

I'm sure you're familiar but there is one stem cell success story from someone who had an autoimmune disorder. I appreciate it's anecdotal but thought I would highlight just in case.

 

[Watasha]

@GBB

The sooner you quit trying to fight tinnitus; the better off you'll be. Most of us were like you and tried all sorts of things and just ended up wasting money. I think you'll be in a better place mentally if you can reduce the amount of time that you think about your tinnitus. It is not easy and you will have bad days but distracting yourself through activities that you enjoy does help.

Buy a fan that is noisy to help mask the tinnitus. I find keeping music on is a good distraction as well.

There are some drugs going through some trials that may help us in the future. Hang in there.

Is your avatar Jim Cornette?

 

[GBB]

Quick update - Konftec seems to have really spiked my tinnitus. I can't continue with it if the tinnitus remains this elevated, it's simply more than I can stand. so may have to call it quits on that.

 

[Elmer B Fuddled]

There's no cure for tinnitus. I'm right here where the Neuromod's Lenire was invented and trials on people who've had tinnitus for 20 to 30 years and their answer, "it didn't do a thing for tinnitus."

 

[GBB]

There's no cure for tinnitus. I'm right here where the Neuromod's Lenire was invented and trials on people who've had tinnitus for 20 to 30 years and their answer, "it didn't do a thing for tinnitus."

I gotta find something to help. It isn't an option for me - it either eventually gets softer/more bearable or I will not last. It is so high pitched and reactive, literally every day has been a profound level of suffering. You may be right, but I pray to god with every fiber of my being you are not.

 

[ehrfried]

Hello GBB,

I didn't expect that this forum is so negative. Maybe I didn't notice it back when I was active here.
My personal experience is that wearing earplugs whenever it feels too loud, sleeping in a quiet place (windows closed, not next to the street), taking vitamins (B12, B1, B6, D, C, Q10, essential amino acids, Phospholipids) and LLLT (in my opinion best: Amon Kaiser in Baden-Baden, Robert Kroll in Hamburg) worked extremely well for me.

Altogether, I am free from tinnitus now for ~four years

LLLT and the supplements improved my hearing to a level better than before my tinnitus started due to noise trauma.

My personal experience is that the effects of LLLT, if implemented right (Amon Kaiser uses ~25000mW and infrared combined with visible red wavelengths) works extremely well. It improves hearing significantly and also tinnitus slowly vanishes until it's gone completely.

This is my experience. I am happy to tell that it can work well and that my personal impression is that many here are more negative than the reality is.

 

[Nobody19]

If you really are prepared to spend that much money on things that are most likely a scam, why not donate a small bit of your budget to research? There is very little money going to tinnitus research, every dollar helps. You can find some interesting researchers on this forum.

With that amount of money, you could actually convince people to start a tinnitus research project.

 

[GBB]

Hello GBB,

I didn't expect that this forum is so negative. Maybe I didn't notice it back when I was active here.
My personal experience is that wearing earplugs whenever it feels too loud, sleeping in a quiet place (windows closed, not next to the street), taking vitamins (B12, B1, B6, D, C, Q10, essential amino acids, Phospholipids) and LLLT (in my opinion best: Amon Kaiser in Baden-Baden, Robert Kroll in Hamburg) worked extremely well for me.

Altogether, I am free from tinnitus now for ~four years

LLLT and the supplements improved my hearing to a level better than before my tinnitus started due to noise trauma.

My personal experience is that the effects of LLLT, if implemented right (Amon Kaiser uses ~25000mW and infrared combined with visible red wavelengths) works extremely well. It improves hearing significantly and also tinnitus slowly vanishes until it's gone completely.

This is my experience. I am happy to tell that it can work well and that my personal impression is that many here are more negative than the reality is.

Thanks very much and congratulations! May I ask how long you had tinnitus for, and for how long you were treated? For me this topic is as serious as my life, so I appreciate the info.

 

[GBB]

If you really are prepared to spend that much money on things that are most likely a scam, why not donate a small bit of your budget to research? There is very little money going to tinnitus research, every dollar helps. You can find some interesting researchers on this forum.

With that amount of money, you could actually convince people to start a tinnitus research project.

Truthfully if this doesn't lessen/abate I fear I will need that money and more just to live.

 

[Nobody19]

Truthfully if this doesn't lessen/abate I fear I will need that money and more just to live.

Why wouldn't you be able to continue your current job?

Btw, nobody is asking you to donate $450k. Even if you donate $10, that would be great.

 

[GBB]

Why wouldn't you be able to continue your current job?

Btw, nobody is asking you to donate $450k. Even if you donate $10, that would be great.

I can barely function - I am eking out each day as is... aside from not being able to speak on the phone because it makes my ringing go crazy and hurt my ears, my laptop fan sounds like a piercing tone, and the tinnitus itself means I am getting 3-4 hours of sleep in spite of mirtazapine and melatonin.

I was going to say maybe I am just weak-willed but that is not the case - this shit is an affliction and very severe. I am completely unsure of what my future entails in any meaningful sense.

 

[Nobody19]

Give your ears some well deserved rest. My TTTS got better after 4 months.
I'm personally not very bothered by my ringing, but it's impossible to compare our tinnitus. I hope your symptoms improve!