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

[Wrfortiscue]

I kinda disagree. I know part of the "tinnitus" cycle is feeding on "negative" emotions, the infinite loop and all that BS.

That's like saying everyone who suffers, including cancer, nerve pain etc., it's all due to their negative thinking.

When one breaks their leg or chops a limb off, do they scream in agony due to their negative thinking of what just happened?

Finally, forums or no forums, it would not matter. I never went on any forums for my interstitial cystitis and still have irritated bladder and piss all the time for over 20 years.

It all depends on the level of pain or suffering one has, and if they can deal with it. Everyone's different. I know life can suck but other than killing myself, what can I do?

 

[Wrfortiscue]

Very insightful advice.

The last thing I want to turn into is a Michael Leigh.

He is apparently incapable of fathoming the very sad irony that arises from insisting that you must learn to detach tinnitus as much as possible from your consciousness awareness while repeating this no less than 8,660 times.

Acquiring this degree of seriously troubling obsessiveness would drive me mad, especially when it never involves a method of reducing the tinnitus volume or duration in the slightest.

When I have had a spike, I would visit this Site all too often with the desperate hope that someone around the World reported something that would relieve this.

I no longer know if accepting this sort of "defeat" is indicative of getting closer to better habituation or pulling a further plank out of my belief system such that a Final Solution is contemplated.

It sucks man. All I know is I rather be annoyed than anxious/scared when I get my tinnitus changes. It changes and reacts a lot, and I have pain too. I have good periods though which allow me to recover and prepare for when the next wave of wtf happens lol.

 

[Greg Sacramento]

There is currently no known cure for tinnitus and it's very late in the game for many of us older sufferers with very severe cases.

There are cures, or as close as it gets, for many whose tinnitus was caused from illness or injury.

Been there, done that - with many - and with many their physical tinnitus has either greatly improved or gone.

I'm also one of the older sufferers with very severe everything.

Having grown up outside of Boston, I would very much like to see one more Fenway night game and the Celtics, but it's not going to happen. I still have my Boston accent.

You can tell those kids whatever you think will serve them the best- because coping is what's important - having technically accurate information about the sad state of current potential treatments is not worth anything to them at this point.

For children, tinnitus caused by otitis media, infection, ear wax and high fever is usually temporary. It can be difficult to get some parents to make an ENT appointment. Some parents won't seek medical when their child has a head injury. Welcome to California. With kids, 90% experience no hearing loss.

Some children do have coping problems and when various injuries are involved.

I really don't have anything more to add that I didn't already say in this thread. I appreciate all the comments. All very special friends. Thank you and Lots of Love.

 

[Marshall]

Will it be equally difficult to treat tinnitus and hearing loss? From my gut feeling hearing loss should be more difficult?

And so the the one million dollar question that nobody really can answer:

Why is that so many got hearing loss without tinnitus and some of us get tinnitus?

My friend who is my age, 28, suddenly went deaf in one ear and has pretty mild hearing loss in his other ear. He had tinnitus for about 2 years and then it went completely away. He showed me his audiogram and it's pretty severe. He also kept living his life like normal when it happened, no hearing protection or anything. Some people are lucky.

 

[Marshall]

It all depends on the level of pain or suffering one has, and if they can deal with it. Everyone's different. I know life can suck but other than killing myself, what can I do?

Reaction is a lot of it too. People commit suicide over tinnitus they can only hear in a quiet room. And I know people with severe tinnitus like my dad who doesn't let it bother him.

 

[Wrfortiscue]

Reaction is a lot of it too. People commit suicide over tinnitus they can only hear in a quiet room. And I know people with severe tinnitus like my dad who doesn't let it bother him.

Most definitely.

 

[Jerad]

Yes. I was referring specifically to tinnitus caused by cochlear damage. My original belief was that regenerating hair cells would be enough to help fix it.

However, I talked to a researcher and also to several ENTs and they said this was wrong... I mean, that hair cells also would need to be "connected" to the rest of the system in the proper way, and that's very complex.

Ya, I feel that. I personally believe that repairing damage in our ears is not as likely to happen in the near future. I liken the ear's anatomy to a very complex watch in the 1800s. Remember those watchmakers who were masters at their craft? The watches used to be so intricate that it required a specialist to perform surgery on them. Many were built by hand and had tiny, delicate parts that — as a whole — made the system work, and tick. Now, multiply that by 100,000+ and you got the ear. With all its parts, I think we might be able to reconstruct it 100-200 years from now, but it's more likely that we'd just replace it entirely with a completely artificial ear, right? That makes more sense.

But not all hope is lost. In the meantime, scientists and doctors ought to be able to come up with a device or medication that can bypass the madness, like what the potassium channel modulators strive to do or benzos. In those cases, you're not really fixing the damage, you're just rerouting the traffic. Like imagine a road that's fucked-up and they close it as a result. It has big-ass potholes or needs repaved. They'd just set up a detour so traffic can still move effectively. That way there's no jams or craziness. But imagine the road never gets repaired and the alternate route becomes permanent. That's how I envision ear treatments in the near future, too — detours, not repairs. Which I'm totally fine with. If we can just silence things, why's it matter what the mechanisms are behind the silence? I do feel bad for those with hearing loss, though. But maybe hearing aids and such could still help them in combination with the "detour" drug or device.

 

[Juan]

In those cases, you're not really fixing the damage, you're just rerouting the traffic.

That's what cochlear implants aim to do, but they are no substitute for natural hearing. Apparently, nothing can resemble natural hearing nowadays.

Wearing a hearing aid is not like wearing glasses. Hearing aids cannot help users hear as they used to do when they had no hearing loss.

The problem with hearing loss is one still hears sound but the quality is worse. For instance, one hears the vowels and the consonants are totally missed or very dimmed. So language sounds like wah-wah-wah, blah-blah... with some random consonants (the one that specific person hears a bit better) pour on to the soup (a soup with some pieces of meat on it). In this scenario, people guess a percentage of what they are told using context.

When hearing worsens more or there is speech with background noise, there is just soup (the vowels) and consonants are almost inexistent... people do not hear them.

 

[beefling]

For instance, one hears the vowels and the consonants are totally missed or very dimmed. So language sounds like wah-wah-wah, blah-blah

Not to go off-topic or anything, but reading this immediately made me think of adults from the Peanuts/Charlie Brown cartoon. Had a good chuckle.

 

[AnthonyMcDonald]

I see that message here a lot from a few users who get aggressive and the only thing they do is saying everything is lost and there is no hope. Well, they don't help anybody at all.

I did have a severe case of tinnitus but I moved away from the forum and lived my normal life again. My tinnitus is there at night and loud as ever but during the day I don't hear it at all, so there is hope even for severe cases.

Here is the thing, EVERYBODY IS DIFFERENT, what may be happening to you may not be the case for others, so stop saying you are the owner of the truth when referring to others' medical conditions.

I know people are suffering and frustrated but don't take that anger against others in suffering.

So your tinnitus went down or you just stopped "focusing" on it? Because if you can't "hear" it during the day and only "hear" it at night that is definitely not severe.

 

[NYCGuy]

So your tinnitus went down or you just stopped "focusing" on it? Because if you can't "hear" it during the day and only "hear" it at night that is definitely not severe.

I know it is severe because I have been able to hear it over everything for as long I can remember but now during the day I can go without caring about it. I think habituation is possible even for extreme cases but again, everybody is different.

I think we should stop saying everybody suffers the same because we don't.

 

[Jerad]

I know it is severe because I have been able to hear it over everything for as long I can remember but now during the day I can go without caring about it. I think habituation is possible even for extreme cases but again, everybody is different.

I think we should stop saying everybody suffers the same because we don't.

Definitely true. Tinnitus can be all over the place and experienced differently by many. I worry that habituation is impossible when it becomes a painful feeling, too, and not just a sound — not like a vibrational feeling, but an electricity type. Maybe I'm wrong, but I was able to habituate pretty good to a bass hum with deep vibrations because it didn't hurt. It was annoying, yes, but the brain can kind of get used to it or block it out because it's still "soft." Tinnitus can be loud and still soft frequency-wise. However, I have this new high frequency, pulsating tone that sounds like 2 knives sharpening against one another and it feels like electrical currents; when it randomly peaks, it aggressively zings, which is like a shrill, sharp zap. That happens often, sometimes a few times per minute. And often, it literally feels like I have currents running through the side of my head. It fluctuates a lot, too, making it hard to get used to it. So I worry that it's not possible to habituate to tinnitus like that, which has become almost sadistic in nature.

 

[TomBradyGOAT]

Tinnitus has multiple causes. Drugs can cause it and it can go away. TMJ. People on here put their eggs in one basket even when it comes to cures. A cure may fix it for some and not the others.

@Greg Sacramento, sorry to hear you came from Boston. I am from Maine. Guess it isn't true that all people from Mass are Massholes.

 

[AnthonyMcDonald]

I know it is severe because I have been able to hear it over everything for as long I can remember but now during the day I can go without caring about it. I think habituation is possible even for extreme cases but again, everybody is different.

I think we should stop saying everybody suffers the same because we don't.

In my opinion "habituation" is only possible if the case is stable or not catastrophic. 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. It's honestly impossible to "not care" about 70+ dB tinnitus that spikes permanently from literally everything.

Yeah it's true not everyone suffers the same, but not everyone has the ability to "habituate" (99% of people who have tinnitus have it mild/moderate/stable, which is why imo they can "habituate" or not care about it). Stability is everything.

In any case I'm glad you're doing well.

 

[Greg Sacramento]

sorry to hear you came from Boston. I am from Maine. Guess it isn't true that all people from Mass are Massholes.

I grew up in Massachusetts, but outside of Boston in an area that had miles of woods, ponds and lakes. I also lived in New Hampshire. My grandparents were born in Maine. I have done some camping in Maine. We would go to L.L. Bean late in the night as back then; they were open 24/7.

 

[DaveFromChicago]

I think habituation is possible even for extreme cases

Yes, it's possible if you remove from all consideration the truly shocking frequency of suicides (especially when they are validated by these various VAD agencies) that are reported on Tinnitus Talk and on other news sites.

I can only imagine the impossibility of habituation for Kent Taylor when he was able to get no more than 2 hours sleep every night for 60 consecutive days. This is even more brutal than the sleep deprivation tortures that the Chinese Communists inflicted on our captured soldiers during the Korean War. Even they knew that such deprivation as Kent Taylor's would utterly destroy the most fortified, stable ego; their techniques for eliciting propaganda would be defeated because the prisoner would be incapable of even recognizing a statement that censured the USA.

You're goddamn right that everybody is different.

It's the emotional-fascist ballyhooers on behalf of habituation (like Jastreboff and Michael Leigh) who maintain that everybody is in fact not different, and if you fail at habituation this is solely because of your own weaknesses and character defects.

 

[blamingeverything]

I'm sick of the negativity. Thank you @Greg Sacramento for posting something positive.

 

[Ken219]

I talk to children with tinnitus within a very large school district.

Why do many children have tinnitus?

 

[volsung37]

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.

 

[volsung37]

Yes, it's possible if you remove from all consideration the truly shocking frequency of suicides (especially when they are validated by these various VAD agencies) that are reported on Tinnitus Talk and on other news sites.

I can only imagine the impossibility of habituation for Kent Taylor when he was able to get no more than 2 hours sleep every night for 60 consecutive days. This is even more brutal than the sleep deprivation tortures that the Chinese Communists inflicted on our captured soldiers during the Korean War. Even they knew that such deprivation as Kent Taylor's would utterly destroy the most fortified, stable ego; their techniques for eliciting propaganda would be defeated because the prisoner would be incapable of even recognizing a statement that censured the USA.

You're goddamn right that everybody is different.

It's the emotional-fascist ballyhooers on behalf of habituation (like Jastreboff and Michael Leigh) who maintain that everybody is in fact not different, and if you fail at habituation this is solely because of your own weaknesses and character defects.

I've been getting an average of about 3 hours sleep for the past 5 months.

Habituation is difficult for severe tinnitus but it can be done. It takes a lot of time though. Maybe a year or more. I did it when I first had tinnitus. Once I habituated sleeping became easier and the noise itself abated.

I am now cursed with vaccine induced tinnitus which seems to be in a whole different league. It will be very hard to habituate to it.

 

[bobvann]

if you fail at habituation this is solely because of your own weaknesses and character defects.

Or as per the YouTube video I posted in General Chat>Tinnitus Truths, you are mentally ill.

 

[Frayact]

Last night was one of the worst I can remember since the late 90s. The low-pitched hum in my ears was so loud, I didn't fall sleep until around 6AM. I had to take a Valium in order to get some semblance of sleep. But that barely did anything. I felt like a complete freak lying there with the noise permeating my skull.

I mention this not to gain sympathy, but to reiterate that we all have our own private hell when it comes to this affliction. I've considered suicide, but I would never go through with it until I had tried literally everything to regain feeling functionable again. My doctor has added a new drug to the antidepressant I'm taking to see if that will improve my life. I'm also going to make an appointment with my ENT (again) to get another hearing test and talk to him about possibly getting a CT scan to find any abnormalities that might exist in my ears. Of course, from 26 years' experience, it's safe to say that nothing new will be found, and my hearing test results will be normal for my age (61). So I may be throwing money down the drain again even though I do have health insurance.

I feel so trapped as I write this. Nothing makes sense, and I have no desire to do anything. The new antidepressant I started a month ago hasn't kicked in, but my doctor said to stick with it. He's a good man and a wonderful physician, so I trust his judgement. But last night I just wanted to go to sleep and never wake up.

You'd think after all these years of dealing with this low-pitched hum off and on, that I could just ignore it and even laugh it off. But the brain doesn't get used to every stimulus. Some noises are so loud they can't be ignored. I have a high-pitched hissing as well, but that sound never interferes with my life. It's like crickets in the background that don't matter. But the hum is a physical sensation that vibrates and turns my pillow into a pneumatic drill when I lay my head upon it. Without proper and regenerative sleep, it's practically impossible to function at 100%. I still go to work and fulfill all my obligations, but I no longer have any hope for the future. My entire view of the world and life has been skewed. I have no appetite. My friends sympathize, but they have no idea what it's like.

Thank you for reading this and letting me contribute to the forum. I'm hoping that one day none of us will need to be here.

Craig

 

[Lane]

I never went on any forums for my interstitial cystitis and still have irritated bladder and piss all the time for over 20 years.

Hi @bobvann -- Apparently some people have improved their interstitial cystitis with ozone therapy. In case you're interested, the section below on bladder infections is from the book The Ozone Miracle, by Frank Shallenberger, M.D. In the book, the author talks about how a person can set up their own system of ozone treatment at home, but there are also easier options. You can purchase things like ozonated olive oil capsules that a person can take internally to get started. Here's what he had to say about bladder infections, with a focus on interstitial cystitis:

Bladder Infections
Bladder infections are usually best treated with antibiotics. If they are resistant, the bladder insufflation technique can be used in addition. But the most incredible use of the ozone bladder insufflation technique is for a very severe bladder disorder known as interstitial cystitis (IC). In 2015 I presented a study to the Cuban Ozone Therapy Society of 18 patents with severe and long standing IC that had not responded to any form of therapy.

Of this very difficult group 55% were completely cured and 30% were substantially improved after only three weeks of ozone therapy. However, because it is such a difficult and painful problem, patients with IC should only treat themselves while under the supervision of a practitioner trained in treating this dosorder. You can find doctors trained in ozone therapy at (American Academy of Ozonotherapy).​

 

[Lane]

The new antidepressant I started a month ago hasn't kicked in,

Hi @Frayact -- Sorry to hear how things have turned more difficult for you. I couldn't help but notice that your increased tinnitus levels seem to be coinciding with your taking a new antidepressant. Any chance that is what could be causing your spike? Best...

 

[Frayact]

Hi @Frayact -- Sorry to hear how things have turned more difficult for you. I couldn't help but notice that your increased tinnitus levels seem to be coinciding with your taking a new antidepressant. Any chance that is what could be causing your spike? Best...

No. My most recent tinnitus relapse happened on March 27. I didn't start the new AD until several weeks later. I switched because I had been on Lexapro for 15 years and had very good success with it. But my doctor said that ADs can lose their efficacy when taken for that many years. The relapse caused my life to spiral into that deep, dark well of depression again. Now, if the new AD makes the symptoms worse, I'll come off of it. But some ADs can take 6-8 weeks to work. I'm just glad I have insurance.

 

[DaveFromChicago]

I'm sick of the negativity. Thank you @Greg Sacramento for posting something positive.

If you are sick of the "negativity", @blamingeverything, then you should get off this forum.

I have no intention of having whatever it is that irritates you so much about these reports that describes the full, real symptomatology of this condition (and its more than occasional tragic consequences) acting as a justification for muzzling and censoring our struggles.

Harry Truman would have shouted in your face, "If you can't stand the heat, then get out of the kitchen."

 

[blamingeverything]

If you are sick of the "negativity", @blamingeverything, then you should get off this forum.

I have no intention of having whatever it is that irritates you so much about these reports that describes the full, real symptomatology of this condition (and its more than occasional tragic consequences) acting as a justification for muzzling and censoring our struggles.

Harry Truman would have shouted in your face, "If you can't stand the heat, then get out of the kitchen."

It is possible to express your experience without being such a toxic presence, as you are.

 

[AnthonyMcDonald]

It is possible to express your experience without being such a toxic presence, as you are.

@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.

 

[Jerad]

I'm sad to see all the suffering on here. I understand and see both sides, to be honest. I understand why some people are so upset and why some may see them as confrontational. I understand why they're confrontational. There are no viable treatments yet. These conditions can be one of the worst things imaginable — when they're catastrophic — and the medical community still hasn't come up with anything, and still often doesn't acquire the appropriate funds to expedite their efforts. So ya, I get the rage, but I also understand why some encourage positivity 'cause sometimes, hopes and dreams are all we got. If there's nothing to believe in or we can't point to something as a shot for refuge, we have nothing left in life — just a bottomless pit.

There's a lot of trauma on this board and that's why the tensions are high. For some, severe tinnitus and hyperacusis are so intrusive — literally painful, physically and emotionally — that it's like being raped or molested nonstop, violated by a force that hides in plain sight. The penetration hurts and the scars it leaves behind, mentally. Only we can see and feel what we're experiencing, and how we experience it is weighed against the levels of torment endured.

For some, it's like a horror movie come true. My experience with very severe tinnitus and hyperacusis reminds me of the movie, "Hellraiser," for example, where the sufferer is Frank or Fran Cotton, their curiosity meets catastrophe, and the blood keeps running like a sadist's wet dream. It's the stuff of true terror, where pleasure's replaced with pain, pain devours all the light, and life procures a sordid tale… you hope there's an end in sight, but you just don't know. The thought of it being eternal is just so scary.

 

[tpj]

I'm sick of the negativity. Thank you @Greg Sacramento for posting something positive.

There is a success stories category here you could focus on.