First Major Setback Since Onset Almost a Year Ago

[Juan]

I'm sorry for taking so long.

@Lex

I don't know why you show me that article. Do you think the article is related to your earlobes issue?

I read the article you mentioned two years ago. Fuchs identified the type II neurons some years ago. Then, he wanted to make his discovering meaningful, and associate it to disorders or symptoms without a known etiology in the scientific literature. But this type of neurons remains intact when hair cells die, and he can't explain what is important, that is: what is changed in people with "sound-induced" pain, or how this nerve cells became more sensitive. So the relationship between this type II afferents and pain is remote (or inexistent). Also, he can't explain why symptoms change all the time, or why sufferers get better, or have setbacks, or recover completely, or why certain sounds with rapid attack are more problematic, or why almost all of them have tensed or moving tensor tympanis, and sometimes other tensions or abnormalities around the TTs, or headaches, nausea, or an accentuated startle reflex, or why some of them are depressed or obsessed (and before their ear problems), and a lot of things more. Fuchs is just pushing a conclusion to make his microscopic discovery meaningful, without understanding the problem in a real and intimate manner. The same happened with "hidden hearing loss".

Liberman and Fuchs (and the whole cochleocentric troupe) are technicians, and they could be good for looking through a microscope, or for provoking acoustic shocks to rats in a fish tank, like the US government does in Guantanamo and other CIA prisons. But definitely they are not good for reaching conclusions, because they don't know what they are talking about.

It is not by chance that Pollard likes these researchers, when he wrote four newsletters without a single mentioning to the tensor tympani, like playing a football match without ball (How could Messi score three goals in a game without a bloody ball?) Pollard doesn't understand the problem, and he is interested in raising money for experiments, when he doesn't need any money, at least not before he tries to think properly.

In my opinion, you won't find an answer to your questions in the cochleocentric troupe.



This is not what you told me in the other thread, some months ago, that you have a random pain even in silence. You wrote "I feel a sharp, stabbing pain inside my ears, usually on the right, but my left ear gets that, too. It happens randomly, even when I'm in a quiet place and haven't been exposed to sounds." And in this very thread, you wrote: "The pain now is there almost 24/7, even in silence." So it is not clear. How is this?

Interesting views! So what do you think, after reading articles etc that causes hyperacusis? What would be the part of hearing damaged to then trigger hyperacusis, the hearing nerve, the inner ear, middle ear...?

 

[Lex]

Interesting views! So what do you think, after reading articles etc that causes hyperacusis? What would be the part of hearing damaged to then trigger hyperacusis, the hearing nerve, the inner ear, middle ear...?

Maybe it depends on the symptoms? I believe mine is nerve related because my ears don't thump. They used to, but not anymore. I get lingering, burning pain consistent with nerve issues. And this pain is responsive to nerve pain meds.

One thing I noticed though is that so many people complain of stabbing pain. Even people with no H and only T sometimes experience it. I wonder what's the mechanism behind that.

 

[Yashin]

Before setback: random pain. Immediately after setback: almost 24/7 pain.

This very thread is about that setback if you took time to comprehend what I had written before you spouted off with so many things. Is that clear enough for you or do you need further explanation?

Ha… take it easy. I did read the thread. I asked because what you told your doctor ("the ear pain corresponds to noise exposure. If I am in silence, the pain disappears") is not the same than "The pain now is there almost 24/7, even in silence". In fact, it is quite the contrary. Unless what you told your doctor was before your setback...? Never mind, I am not going to write your biography anyway.

And the pain I experience is burning and tingling and stabbing, similar to neuropathic pain. It spreads out sometimes which is why I think facial nerves are affected but most of the time, the pain is deep inside and around the ears. It also responds to nerve meds like pregabalin, which I take.

I never had a burning pain. And continuous… this sounds awful. I can only think that if you got this pain just by listening some seconds to music, it seems to be an aggravation of the same process, not a different thing. I don't know what causes this type of pain. Certain muscle or tissue around there? From what you say and what I read, it could be a branch of the trigeminal nerve which is irritated, probably the same that innervates the tensor tympani. Burning pain is mentioned among the symptoms of "ttts" in its more expanded versions (look at Westcott's articles about acoustic shocks).

I think Limebyte, who posted in this thread, has this type of pain, but I don't know if it is exactly the same (and his case is quite rare). He recommended you a product to reduce the pain, and some months ago he told me that it worked pretty well. You could ask him, or another person, to see how to manage the pain until you get better. Just be careful with pregabalin, especially in the long-term. Ideally, you should not take any drug which could complicate things.

An ear infection? Well, I don't know, a doctor should know, ideally.

 

[Yashin]

Allegedly, if a sound cannot cause cochlear damage, then it also cannot induce or worsen hyperacusis.

@Sen, Yastrepov has no idea about the etiology of what he calls "hyperacusis" (or "sound intolerance", or "dysacusis", or whatever). You can see by yourself reading "Presumed mechanism" in this recent, 2014 article https://misophoniatreatment.com/wp-...-Treatments-for-Decreased-Sound-Tolerance.pdf

So, if he doesn't know the cause of it, how could he know what causes it or worsens it? (now that you like paradox games)

That is why TRT is a setback machine, or a "tinnitus after hyperacusis" machine.

If the onset or worsening of hyperacusis has nothing to do with cochlear damage, why does your cochlear need to be damaged by noise for hyperacusis to be inducted or worsened?

Nice paradox, huh? Answer: Just because your cochlea doesn't need to be damaged by noise for hyperacusis to be inducted or worsened. Paradox resolved!

 

[Yashin]

How can you say that's not the case? What is your sample size?

HomeoHebbian made an interesting thread touching on this topic:

https://www.tinnitustalk.com/thread...trouble-hearing-conversations-in-noise.17763/

The paper does have some problems, but it's still an important finding. It just raises more questions than answers.

@Alue

Thank you for the link.

Surely the thread is interesting. I read the first post and also the abstract of the paper. That is enough for me, I am not going to read the rest just because I have other things to do and the subject doesn't interest me too much. Fabrikat asked me my opinion, and I wrote it.

Certainly the cochlea receives sound in a complex way, not measured by a pure tone test. Regular audiograms have a lot of margin of error, at least at the place where I went, and high freqs are usually not measured. So, in this sense, we could say that also hair cell loss is sometimes "hidden" for tests.

If there is only a loss of synaptic density, this supposedly should affect hearing in some way. Or not. I just don't know and I don't know how much people are affected by this discerning problem.


P.S. As I see that you are informed about this topic, do you think that all the people who have hearing loss, even subtlety, or even if they don't know it, compared to how they heard when they were born, have also this problem of discerning voices over difficult backgrounds? (since the loss of these synapses is primary/previous to a secondary hair cell damage). Is it like this? Or how did you understand it?

 

[Yashin]

Interesting views! So what do you think, after reading articles etc that causes hyperacusis? What would be the part of hearing damaged to then trigger hyperacusis, the hearing nerve, the inner ear, middle ear...?

@Juan

Well, in post #85 I wrote a summary which answers your question. Have you read it?

This abnormal tension could make a physiologic mess, but doesn't mean there is damage that could be seen.

As I wrote in #85 there are other variations and complications. But almost all cases I read about in forums are related to this "ttts". Also, there is sound intolerance from reasons completely different, like migraines or Lyme disease.

 

[Juan]

And then again, if we follow Liberman's logic, everybody would have "hyperacusis". But "hyperacusis" is not a disease, it is "merely discomfort on a beep beep test in a cubicle", as someone said. I suspect almost all people in this forum who report "sound discomfort" (or "dysacusis" or "auditory dysesthesia") have a tension or abnormality in the tensor tympani mechanism, or "ttts", as Klockhoff called it, which is the root of their discomfort and explains all its particularities, and its comings and goings. In some people, like Lex and Sen, the problem is spread physically in the zone nearby, and probably the trigeminal nerve gets irritated. And sometimes the tension or abnormality of the TT could be an indirect consequence of another physical issue, like "tmjd" or an infection, or a result of an external factor, like a punch in the face.

The discomfort could be present with or without sound, so the term "hyperacusis" is not accurate. What happens is that sufferers hear through a mechanism that is not normal. And this situation could lead to an increase or distortion of the internal sound, because of a natural mechanism of protection, or because fear and overprotection of the sufferer (using earplugs too much or when it is not necessary). Internal volume is naturally very plastic; this is normal, not pathologic. Other factors which contribute to confusion are: tinnitus, hearing loss, emotional state, misinformation. People with a tinnitus that is not tolerated could become phonophobic and could have distortion in the internal volume, without "ttts". Or they could gradually develop "ttts", or experience otalgia.

At least this is what I learned from my own experience and reading some medical texts and anecdotes in forums.

In theory here are tests to assess whether hyperacusis has a cochlear origin, and also to check the way the middle ear functions (impedance test, accoustic reflex, etc). Doctors dont know how to fix hyperacusis but they can more or less point to the area affected and responsible for an increased gain. Those studies about synaptic changes are maybe related to hyperacusis stemming from a malfunctioning of the hearing nerve, a problem that would be located beyond the cochlea.

 

[Bill Bauer]

@Lex did your T get louder after this setback in July? Has it improved since that time?

 

[Lex]

@Bill Bauer My T doesn't really change. I don't care about my T anymore. It's my H that's causing me distress. H has improved a lot to the point that I can go out shopping, eat at restaurants, stay in a room with more than a dozen people talking all at once. I still get pain, though, but it disappears much, much faster now. I also don't talk on the phone, don't use earphones, don't really listen to music for more than a few minutes a day, and don't go near speakers of any sort.

But the experience has changed me a lot, and I think I've become much more aware of JUST HOW BAD IT CAN GET. It's such an unforgiving, merciless condition.

 

[Bill Bauer]

I don't care about my T anymore.

Do you hear it only in quiet rooms, or would you say that you had habituated?

 

[Lex]

Do you hear it only in quiet rooms, or would you say that you had habituated?

I won't say I habituated. I think I'm just forced to see (or hear?) things from a new perspective. But my T truly doesn't bother me anymore, and I hear it loud and clear because I wear earplugs almost 24/7. My H issue is more of frequencies and impact sounds, and less of volume (though anything above 95 db sounds too loud).

 

[HCR123]

@Lex Hi Lex...I'm relatively new to all this...not even a week in...my 'H' pain? and T come from having an audio test done at my ENT. Had I known it could have triggered it, I wouldn't have taken those tests. I winced at the pressure and high decibel sounds. I had had intermittent 'T' sounds for about a week. I've been reading lots of things on how to manage and cope (therapy/mindfulness). What supplements to take...using some exposure therapy...but haven't been able to find anything that might help make the pain subside a bit. Sometimes it's only on one side, today I had in both but subsided on left. Since you have been through a bit could you share what you may have taken to help better cope or manage with the 'H' pain? I think it seems to fluctuate depending on the level of anxiety/stress. Would you agree? Tx

 

[Lex]

@Lex Since you have been through a bit could you share what you may have taken to help better cope or manage with the 'H' pain? I think it seems to fluctuate depending on the level of anxiety/stress. Would you agree? Tx

Stress and anxiety affect how I deal with H but they do not affect H itself. Whether I'm calm or anxious/stressed, the same sounds cause me pain. That's it. Noise and only noise affects me. I got better when I avoided noisy places/activities and when I wore ear protection. It took a long time though and I'm still far from baseline.

However, I did take Lyrica (pregabalin) for a few months. It helped take the edge off the pain a bit. But the side effects are crazy, so I decided it wasn't worth taking it. I also used moringa ointment to ease the pain behind my ears. I also tried different supplements like NAC, GABA, magnesium, curcumin, piperine, resveratrol, etc. I went on an organic diet.

But really, time and silence are your best chances for recovery for now. And hopefully in the near future, science.

 

[PaulBe]

I won't say I habituated. I think I'm just forced to see (or hear?) things from a new perspective. But my T truly doesn't bother me anymore, and I hear it loud and clear because I wear earplugs almost 24/7. My H issue is more of frequencies and impact sounds, and less of volume (though anything above 95 db sounds too loud).

This is pretty much where I am at these days too.

 

[Taylorslay]

How did you improve after your setback @Lex as of today?

 

[Lex]

Hi everyone,

I decided not to be active on TT anymore, at least not for some time. I'm trying to live my life as normally as this condition allows me. I'm still fairly active on H support groups on FB, but mostly because I relate to the discussions there more than I do here.

I've vastly improved since I last posted but I am not yet back to baseline pre-setback. I still wear earplugs almost 24/7, but the throbbing and burning pain has significantly diminished, enough for me to start thinking of my future and taking care of myself again. Also, I'm used to wearing earplugs by now. They feel like they're already a part of me. I do take them off at home, something I wasn't able to do before out of pain and fear.

I started doing yoga which helps me feel calmer. I think that helps a lot. And I never dared to put on earphones or headphones, not once, not even for a few seconds. I stay away from speakers of all sorts. I watch Netflix and listen to music, but at a low volume and through a Bose bluetooth speaker with awesome sound quality.

Nevertheless, I hope I can get on a plane and feel excited about it. Maybe late this year or next year, we'll see. I'll let you all know.

Honestly, I didn't want to post about my progress for fear of jinxing it, but I know how it feels to follow someone's posts only for them to disappear, leaving me wondering if they worsened or improved. I'd like to think that reading this post will help at least one person.

H is such a roller coaster ride so I'll enjoy this respite for as long as it lasts. I don't consider this a success story, though. A success story for me means complete recovery. I'm still waiting for science to deliver.

For now, I hope everyone in the same boats find relief one way or the other.

 

[glynis]

@Lex,
Wishing you the best of luck and we are hear if you need us but im sure your future will be brighter.
Love glynis x

 

[Tinker Bell]

Hi everyone,

I decided not to be active on TT anymore, at least not for some time. I'm trying to live my life as normally as this condition allows me. I'm still fairly active on H support groups on FB, but mostly because I relate to the discussions there more than I do here.

I've vastly improved since I last posted but I am not yet back to baseline pre-setback. I still wear earplugs almost 24/7, but the throbbing and burning pain has significantly diminished, enough for me to start thinking of my future and taking care of myself again. Also, I'm used to wearing earplugs by now. They feel like they're already a part of me. I do take them off at home, something I wasn't able to do before out of pain and fear.

I started doing yoga which helps me feel calmer. I think that helps a lot. And I never dared to put on earphones or headphones, not once, not even for a few seconds. I stay away from speakers of all sorts. I watch Netflix and listen to music, but at a low volume and through a Bose bluetooth speaker with awesome sound quality.

Nevertheless, I hope I can get on a plane and feel excited about it. Maybe late this year or next year, we'll see. I'll let you all know.

Honestly, I didn't want to post about my progress for fear of jinxing it, but I know how it feels to follow someone's posts only for them to disappear, leaving me wondering if they worsened or improved. I'd like to think that reading this post will help at least one person.

H is such a roller coaster ride so I'll enjoy this respite for as long as it lasts. I don't consider this a success story, though. A success story for me means complete recovery. I'm still waiting for science to deliver.

For now, I hope everyone in the same boats find relief one way or the other.

Glad you posted! Wishing you health and happiness this year!

 

[Jake007]

Wishing you well lex, keep on truckin

 

[Codaz]

Hi everyone,

I decided not to be active on TT anymore, at least not for some time. I'm trying to live my life as normally as this condition allows me. I'm still fairly active on H support groups on FB, but mostly because I relate to the discussions there more than I do here.

I've vastly improved since I last posted but I am not yet back to baseline pre-setback. I still wear earplugs almost 24/7, but the throbbing and burning pain has significantly diminished, enough for me to start thinking of my future and taking care of myself again. Also, I'm used to wearing earplugs by now. They feel like they're already a part of me. I do take them off at home, something I wasn't able to do before out of pain and fear.

I started doing yoga which helps me feel calmer. I think that helps a lot. And I never dared to put on earphones or headphones, not once, not even for a few seconds. I stay away from speakers of all sorts. I watch Netflix and listen to music, but at a low volume and through a Bose bluetooth speaker with awesome sound quality.

Nevertheless, I hope I can get on a plane and feel excited about it. Maybe late this year or next year, we'll see. I'll let you all know.

Honestly, I didn't want to post about my progress for fear of jinxing it, but I know how it feels to follow someone's posts only for them to disappear, leaving me wondering if they worsened or improved. I'd like to think that reading this post will help at least one person.

H is such a roller coaster ride so I'll enjoy this respite for as long as it lasts. I don't consider this a success story, though. A success story for me means complete recovery. I'm still waiting for science to deliver.

For now, I hope everyone in the same boats find relief one way or the other.

Can you tell me how and why yoga calms you?
What are the bad decisions you made that gave you T.

 

[ChineseHazel]

Wish you may and wish you might

 

[John Meyers]

Hi everyone,

I decided not to be active on TT anymore, at least not for some time. I'm trying to live my life as normally as this condition allows me. I'm still fairly active on H support groups on FB, but mostly because I relate to the discussions there more than I do here.

I've vastly improved since I last posted but I am not yet back to baseline pre-setback. I still wear earplugs almost 24/7, but the throbbing and burning pain has significantly diminished, enough for me to start thinking of my future and taking care of myself again. Also, I'm used to wearing earplugs by now. They feel like they're already a part of me. I do take them off at home, something I wasn't able to do before out of pain and fear.

I started doing yoga which helps me feel calmer. I think that helps a lot. And I never dared to put on earphones or headphones, not once, not even for a few seconds. I stay away from speakers of all sorts. I watch Netflix and listen to music, but at a low volume and through a Bose bluetooth speaker with awesome sound quality.

Nevertheless, I hope I can get on a plane and feel excited about it. Maybe late this year or next year, we'll see. I'll let you all know.

Honestly, I didn't want to post about my progress for fear of jinxing it, but I know how it feels to follow someone's posts only for them to disappear, leaving me wondering if they worsened or improved. I'd like to think that reading this post will help at least one person.

H is such a roller coaster ride so I'll enjoy this respite for as long as it lasts. I don't consider this a success story, though. A success story for me means complete recovery. I'm still waiting for science to deliver.

For now, I hope everyone in the same boats find relief one way or the other.

Good idea Lex! -- Hopefully, next time we hear from you it will be because you have made some great progress.

I was doing great for a couple years and had a huge setback a month ago when my T spiked and is still spiking.

I can't figure out what caused it but may be a loud bar (nothing like the loud concert I got my T at) but, then again, I don't remember my T spiking for a week after that. -- Mr T sure messes with my head at times..

Anyway, the best thing to do is not to keep searching for that silver bullet since there isn't one yet. -- Instead, stay healthy and busy.

There are stories of noise-induced T sufferers suddenly not hearing their T anymore. -- I have yet to see an update like that posted by the actual recovered person (having it more than a year) but maybe that is because they decided to go on with their lives and not focus on their T anymore..

 

[Lex]

I promised I'd make updates every now and then so here goes. Over the weekend, I went on a trip to the beach. It was a four-hour drive either way, but I survived with my new Bose QC 35 and earplugs.

I really love the Bose, they are easier to wear than earmuffs and they're great with cutting off the continuous, low-frequency rumbling of the coaster engine. I had bouts of pain and also a throbbing headache, but nothing I couldn't handle. My last trip to the beach was three years ago, and my last out-of-town holiday was a year and a half ago. I want to live my life in ways that I can, so though it's frustrating that I have to consider so many things which others don't think twice about, I'm glad I can still find some joy in my life. I spent hours in the water because I missed it so, so much.

My next goal is taking a three-hour flight. Hope I can do it!

 

[Proteo]

Does anyone know of hearing protection for the bony area between the ear and the neck? A significant amount of the ambient sounds actually gets in through there.

 

[Tinker Bell]

I promised I'd make updates every now and then so here goes. Over the weekend, I went on a trip to the beach. It was a four-hour drive either way, but I survived with my new Bose QC 35 and earplugs.

I really love the Bose, they are easier to wear than earmuffs and they're great with cutting off the continuous, low-frequency rumbling of the coaster engine. I had bouts of pain and also a throbbing headache, but nothing I couldn't handle. My last trip to the beach was three years ago, and my last out-of-town holiday was a year and a half ago. I want to live my life in ways that I can, so though it's frustrating that I have to consider so many things which others don't think twice about, I'm glad I can still find some joy in my life. I spent hours in the water because I missed it so, so much.

My next goal is taking a three-hour flight. Hope I can do it!

Glad you updated, Lex! I can relate to being frustrated about everything we have to consider that others do not have to think about. It annoys me, but I try to remember that I have always had things to consider. I've had these other health concerns for so long that considering them is just part of my norm. And one day my hearing will be, too.

 

[Juan]

I promised I'd make updates every now and then so here goes. Over the weekend, I went on a trip to the beach. It was a four-hour drive either way, but I survived with my new Bose QC 35 and earplugs.

I really love the Bose, they are easier to wear than earmuffs and they're great with cutting off the continuous, low-frequency rumbling of the coaster engine. I had bouts of pain and also a throbbing headache, but nothing I couldn't handle. My last trip to the beach was three years ago, and my last out-of-town holiday was a year and a half ago. I want to live my life in ways that I can, so though it's frustrating that I have to consider so many things which others don't think twice about, I'm glad I can still find some joy in my life. I spent hours in the water because I missed it so, so much.

My next goal is taking a three-hour flight. Hope I can do it!

I'm sure you can fly. Step by step. Keep on the right track!

 

[Rain]

Predisone does not work. Makes sound worse.

 

[IvanRus]

@Lex
Did you take prednisolone at the very beginning of this story?

On what day did you start taking prednisolone and what daily dose?

Has it at least slightly reduced your T and H?

 

[Bill Bauer]

Did you take prednisolone at the very beginning of this story?

She posted

Got my prednisone after much lying and acting, hope it's not too late. And also the hospital noise added another layer to the pain. I just want to curl myself into a ball and never wake up.

on July 12. So she was able to begin taking prednisone 24-48 hours after the incident.

 

[Alue]

I promised I'd make updates every now and then so here goes. Over the weekend, I went on a trip to the beach. It was a four-hour drive either way, but I survived with my new Bose QC 35 and earplugs.

I really love the Bose, they are easier to wear than earmuffs and they're great with cutting off the continuous, low-frequency rumbling of the coaster engine. I had bouts of pain and also a throbbing headache, but nothing I couldn't handle. My last trip to the beach was three years ago, and my last out-of-town holiday was a year and a half ago. I want to live my life in ways that I can, so though it's frustrating that I have to consider so many things which others don't think twice about, I'm glad I can still find some joy in my life. I spent hours in the water because I missed it so, so much.

My next goal is taking a three-hour flight. Hope I can do it!

Glad to hear you're doing well. I love my Bose QC 35 as well, they help a lot with the engine noise of airplanes too. There is still some higher frequency air noise that comes through while flying, but you can wear earplugs underneath for that. A lot of it comes down to the type of aircraft and where you sit.