Pain Hyperacusis Recovery Rate?

[Pierce Wolf]

So our lives are essentially indefinitely on hold? Let's hope SPI-1005 will help a great deal in any case.

Well in extremely severe cases I've seen reports of people undergoing labyrinthectomy surgery for hyperacusis. The surgery is normally done for very bad Ménière's cases. It's not exactly a cure but it does eliminate all symptoms. Just at a great cost for it completely deafens whatever ear they treat for it is literally destruction of the cochlea.

Now I'd say that for anyone to seriously consider this they'd probably want to be a good few years into hyperacusis and either a very severe case or a case that continues to get worse no matter what they do. Also only for those with it in one ear or only really bad in one ear. I don't even think they would let someone do this procedure to both of their ears.

To be honest even I am keeping this option on the table for I only have problems in one ear and they are pretty bad and I've noticed strange increases of problems (worsening noise distortion, increased pain, and vertigo attacks).

 

[Sevv]

Well in extremely severe cases I've seen reports of people undergoing labyrinthectomy surgery for hyperacusis. The surgery is normally done for very bad Ménière's cases. It's not exactly a cure but it does eliminate all symptoms. Just at a great cost for it completely deafens whatever ear they treat for it is literally destruction of the cochlea.

Now I'd say that for anyone to seriously consider this they'd probably want to be a good few years into hyperacusis and either a very severe case or a case that continues to get worse no matter what they do. Also only for those with it in one ear or only really bad in one ear. I don't even think they would let someone do this procedure to both of their ears.

To be honest even I am keeping this option on the table for I only have problems in one ear and they are pretty bad and I've noticed strange increases of problems (worsening noise distortion, increased pain, and vertigo attacks).

Do you know whether labyrinthectomy worked for hyperacusis? Theoretically it should work for loudness hyperacusis (as that one is just amplified hearing) but I'm wondering more about pain hyperacusis.

 

[Pierce Wolf]

Do you know whether labyrinthectomy worked for hyperacusis? Theoretically it should work for loudness hyperacusis (as that one is just amplified hearing) but I'm wondering more about pain hyperacusis.

As far as I am aware it completely gets rid of hyperacusis. Tinnitus is a 50/50 shot. If the tinnitus is 100% in the brain or nerve then it won't help. If it's specifically due to the hair cells then it will. The surgery is a total destruction of your inner ear. If there is no sound being recognized to cause the pain then no pain.

I read a story of a professional musician who out of nowhere got horrible hyperacusis. He could no longer do his job that he spent 20+ years in. He was desperate and got a labyrinthectomy and afterward had no problems. Obviously having a complete deaf ear comes with obstacles but if the hyperacusis is so severe then it could outweigh it.

 

[Moss]

Without prolonged periods of silence, pretty low. Invest in Peltors, X1A for daily use and X3A for if you know louder sounds are coming.

A lot of people claim pain hyperacusis is often better within 1-2 years. However, the fact of the matter is that we will never be truly cured by rest even if it does reduce symptoms. I don't believe ear fragility can change much on its own. We must simply survive until medication is available.

I've had another horrible nerve related pain condition that was sparked by autoimmune activity due to a course of antibiotics, and the prognosis was pretty grim. It was a the other end of the body where there are plenty of sensitive nerve endings as well. I realise I didn't have it as bad as some people but it was pretty bad nonetheless. After seven years I was a lot better and now after eighteen years I'm aware I have it but it doesn't cause me any major problems. I personally believe this is similar to hyperacusis however with the exception that it's so difficult to protect oneself from exacerbating the pain because of living in a world of sound. I DO believe neuropathic pain disorders can resolve themselves over time provided the person suffering takes good care of themselves nutrition wise and by following a healthy life style in general. I do believe that rest is all important. How long it takes depends how disrupted the nervous system is, no doubt.

I'm speaking from the point of view of someone which a chronic pain disorder, fibromyalgia, so I don 't say this lightly at all. But I think it's quite possible to get quite well. You really will have to be mindful of not taking any chances, not ever again. But then I also think that a really bad case of hyperacusis will instil in you the rule of caution and that's just something you have to accept and learn to live with. After all, the prospect of getting out and about if simple ear plugs can protect you, really doesn't seem so bad when you've been completely housebound and isolated because of really severe hyperacusis.

The other thing is, the prospect of some form of gene therapy to lower immune activity isn't completely out of reach and ironically, research into COVID-19 might help us indirectly. It's just my opinion but I think an improved understanding of the immune system will help humans understand and treat many mysterious illnesses that have been scoffed at previously because they don't show up in any of the typical tests. All of the above is just my opinion, of course.

In answer to the above post I would also like to say that I don't like the 3 M peltors very much (heavy, ugly, uncomfortable, not a tight fit) and have instead found Mpow ear defenders really comfortable and more aesthetically acceptable. They have a model for high SNR so make sure to get the right one if you need a lot of protection. I also find the one with the metal rather than plastic mechanism gives a tighter fit. I have also experimented with sticking some extra foam inside.

 

[Moss]

As far as I am aware it completely gets rid of hyperacusis. Tinnitus is a 50/50 shot. If the tinnitus is 100% in the brain or nerve then it won't help. If it's specifically due to the hair cells then it will. The surgery is a total destruction of your inner ear. If there is no sound being recognized to cause the pain then no pain.

I read a story of a professional musician who out of nowhere got horrible hyperacusis. He could no longer do his job that he spent 20+ years in. He was desperate and got a labyrinthectomy and afterward had no problems. Obviously having a complete deaf ear comes with obstacles but if the hyperacusis is so severe then it could outweigh it.

Deafness can aggravate tinnitus.

 

[Pierce Wolf]

Deafness can aggravate tinnitus.

Again I think this has to be looked at different from normal deafness. This is a complete destruction of everything that allows you to comprehend sound. If the tinnitus is in the ear itself and doesn't have to do with the brain then this should cure it theoretically.

I've read things that for people who underwent Labyrinthectomy for any reason. They say that 50% of the time the tinnitus was cured entirely in the ear affected. And improvements in 30%. Only 20% said that the tinnitus was unchanged. 0% said it got worse. That tells me that most people either have it all from their ear or a combination of ear and brain. That tells me that the surgery can most of the time help or cure, on top of solving hyperacusis problems.

I feel that the deafness that you are referring to is when more of your hair cells die off or become over reactive from damage resulting in tinnitus and making hearing more difficult. Whereas the surgery doesn't leave anything behind.

To be honest though I have also heard other things state the tinnitus can get worse after rarely. They did not have statistics to back up anything though. Again for me at least, with really bad tinnitus and horrible hyperacusis with pain and distortions, along with balance issues, vertigo attacks, and dryness feeling throughout my whole left side of my head...

I really am keeping this surgery on the table. Being completely deaf in one ear sounds horrible. Not to mention relearning your balance to a degree. But my life still is a constant struggle. Ever since my symptoms started developing, everything I do feels empty and unfun, I seriously feel that the whole side of my head is screwed up. This stuff is way too hard for me to live with.

If it continues for too much time, I will look into getting the surgery done.

 

[TheDanishGirl]

Again I think this has to be looked at different from normal deafness. This is a complete destruction of everything that allows you to comprehend sound. If the tinnitus is in the ear itself and doesn't have to do with the brain then this should cure it theoretically.

I've read things that for people who underwent Labyrinthectomy for any reason. They say that 50% of the time the tinnitus was cured entirely in the ear affected. And improvements in 30%. Only 20% said that the tinnitus was unchanged. 0% said it got worse. That tells me that most people either have it all from their ear or a combination of ear and brain. That tells me that the surgery can most of the time help or cure, on top of solving hyperacusis problems.

I feel that the deafness that you are referring to is when more of your hair cells die off or become over reactive from damage resulting in tinnitus and making hearing more difficult. Whereas the surgery doesn't leave anything behind.

To be honest though I have also heard other things state the tinnitus can get worse after rarely. They did not have statistics to back up anything though. Again for me at least, with really bad tinnitus and horrible hyperacusis with pain and distortions, along with balance issues, vertigo attacks, and dryness feeling throughout my whole left side of my head...

I really am keeping this surgery on the table. Being completely deaf in one ear sounds horrible. Not to mention relearning your balance to a degree. But my life still is a constant struggle. Ever since my symptoms started developing, everything I do feels empty and unfun, I seriously feel that the whole side of my head is screwed up. This stuff is way too hard for me to live with.

If it continues for too much time, I will look into getting the surgery done.

I really don't see how this surgery is supposed to help hyperacusis. Who with hyperacusis has been helped by this surgery? If there is no data on that, then that is a really far shot imo... like REALLY FAR. Remember hyperacusis is also a brain issue.

 

[Aaron91]

I really don't see how this surgery is supposed to help hyperacusis. Who with hyperacusis has been helped by this surgery? If there is no data on that, then that is a really far shot imo... like REALLY FAR. Remember hyperacusis is also a brain issue.

The jury is still out with regards to the pathology, but it is almost certain that there is a peripheral element at play in at least some types of hyperacusis, if not all. Even if it were just a brain issue, I think @Pierce Wolf is saying that without external stimulus the brain can't react to the sound anyway. For example, if you just "think" of a loud sound, that alone will not cause you discomfort-related hyperacusis — there has to be an external stimulus.

Personally speaking, as someone with bilateral hyperacusis, I would not consider this surgery unless I was on the brink of suicide. If I had unilateral hyperacusis, I would only consider it in the face of no other alternative on the horizon, but thankfully we are living in a generation where hearing-related issues are finally getting the attention they deserve in the research field — it's only a matter of time before we see results in the clinical field.

Hyperacusis sucks but going completely deaf would pose its own set of challenges.

 

[TheDanishGirl]

The jury is still out with regards to the pathology, but it is almost certain that there is a peripheral element at play in at least some types of hyperacusis, if not all. Even if it were just a brain issue, I think @Pierce Wolf is saying that without external stimulus the brain can't react to the sound anyway. For example, if you just "think" of a loud sound, that alone will not cause you discomfort-related hyperacusis — there has to be an external stimulus.

Personally speaking, as someone with bilateral hyperacusis, I would not consider this surgery unless I was on the brink of suicide. If I had unilateral hyperacusis, I would only consider it in the face of no other alternative on the horizon, but thankfully we are living in a generation where hearing-related issues are finally getting the attention they deserve in the research field — it's only a matter of time before we see results in the clinical field.

Hyperacusis sucks but going completely deaf would pose its own set of challenges.

Maybe it would work for some variants of hyperacusis, but not the pain kind I think. I spoke to a guy who had it done. He has pain hyperacusis and he said it made no change to his... of course we can't conclude that it won't ever work, just based of one case.

I still think hearing related issues gets far too little attention compared to how prevalent hearing issues are in society. Almost everyone will develop one or more hearing issues at some point in their life, whether just plain hearing loss or tinnitus etc. It should be a MASSIVE worldwide research area, and I don't see it being that. I personally don't believe any form of treatment for hyperacusis will come for MANY years. I wish I had hope, but I really don't see any in the form of a future treatment.

 

[weab00]

Maybe it would work for some variants of hyperacusis, but not the pain kind I think. I spoke to a guy who had it done. He has pain hyperacusis and he said it made no change to his... of course we can't conclude that it won't ever work, just based of one case.

I still think hearing related issues gets far too little attention compared to how prevalent hearing issues are in society. Almost everyone will develop one or more hearing issues at some point in their life, whether just plain hearing loss or tinnitus etc. It should be a MASSIVE worldwide research area, and I don't see it being that. I personally don't believe any form of treatment for hyperacusis will come for MANY years. I wish I had hope, but I really don't see any in the form of a future treatment.

On the other hand, I spoke with a guy who had the Silverstein surgery done on one of his ears and is doing great now. He had loudness hyperacusis and some pain before, but now he can drive, listen to music, and eat at restaurants, no problem. It's worked so well he's considering getting his other ear done too.

There are cases where middle ear surgery can definitely improve hyperacusis, as evidenced by this guy's success story.

 

[Pierce Wolf]

I really don't see how this surgery is supposed to help hyperacusis. Who with hyperacusis has been helped by this surgery? If there is no data on that, then that is a really far shot imo... like REALLY FAR. Remember hyperacusis is also a brain issue.

I've read multiple accounts of people having their hyperacusis "cured" in the ear affected. Again, the surgery is a destruction of what causes you to detect noise. As far as I know hyperacusis involves noise being louder than normal, distorted, and cause pain. If the noise can't be detected then it won't cause these things. I'm not sure how hyperacusis could be a brain thing. Makes much more sense that it is a middle ear problem most likely with bones, or a inner ear issue. Especially when the damage is noise induced.

A professional orchestra musician got hyperacusis so bad in one ear he could no longer do the job he spends decades in. He had the surgery and it resolved all of his symptoms.

 

[TheDanishGirl]

I've read multiple accounts of people having their hyperacusis "cured" in the ear affected. Again, the surgery is a destruction of what causes you to detect noise. As far as I know hyperacusis involves noise being louder than normal, distorted, and cause pain. If the noise can't be detected then it won't cause these things. I'm not sure how hyperacusis could be a brain thing. Makes much more sense that it is a middle ear problem most likely with bones, or a inner ear issue. Especially when the damage is noise induced.

A professional orchestra musician got hyperacusis so bad in one ear he could no longer do the job he spends decades in. He had the surgery and it resolved all of his symptoms.

Well like I said, I talked to a guy with pain hyperacusis who had it done, and he said it made no difference to his, so for some people it's not just an ear issue.

My own hyperacusis is only with pain. No louder sounds or distortions. And both my ears are equally affected, so this would never work for me personally.

 

[Moss]

@Pierce Wolf, ok, I'm not that familiar with the idea of surgery. I would worry about it a lot, though, because at least in my own case with both hyperacusis and tinnitus, it's clear to me that the immune system is involved. So in simple terms, perhaps the immune system is on high alert because it perceives of threat and is unsuccessfully trying to fix it.

I'm saying this as someone who acquired the condition from auditory trauma but is experiencing a deterioration due to medical issues. Already surgery is a threat to the immune system... I don't even know how I'm going to fare the next time I have to go in for surgery on my feet. My hyperacusis and tinnitus don't respond to sound alone. So I dunno.

 

[Christine2222]

I spoke to a guy who had it done. He has pain hyperacusis and he said it made no change to his... of course we can't conclude that it won't ever work, just based of one case.

Do you mean that he still felt pain from sound that he could no longer hear at all post surgery, or just that the pain in silence that he had from hyperacusis continued?

 

[GoatSheep]

Pain hyperacusis can improve significantly - I was absolutely distraught at what my life had become 10 months ago and now I am 90% back to normal. I think time and being very careful with noise exposure helped me get better. Having said that, I won't regard my ears as fully 'back to normal' until regenerative treatment or other drugs come along and actually fix the underlying damage. I know I have to be careful with my noise exposure from now on but it doesn't affect my everyday life that much anymore which is progress.

When your pain hyperacusis was at its worst, how often did you have to wear hearing protection?

I had a mild case in comparison to now. With my original noise trauma it may have been somewhat moderate.

Now after some setbacks from "safe" volume level things I'm in hearing protection 24/7. I mostly don't get any immediate pain except to certain audio stuff from my kids TV or iPads, but if I sit in a quiet room with no protection on within 15-30 I have pretty moderate delayed pain.

 

[GoatSheep]

I completely agree. My personal experience is that the pain hyperacusis and tinnitus were pretty bad, but I was able to go out and enjoy loud events as long as I wore ear plugs. I would talk to people quite loudly and get talked back without problems as long as I wore ear plugs. I just wasn't all that sensitive/reactive, and rest helped so I saw improvement over a few weeks after set backs. However, since I was subjected to medical trauma, both tinnitus and hyperacusis have become so much worse than I could possibly have imagined. You just don't know until it happens to you, you have nothing to compare with. And then you somehow adapt to the new situation because you don't have a choice. Now, I don't tolerate any sounds at all even with double protection (and it was fairly sudden onset so it doesn't seem to be a case of over protection). High frequency sounds cut right through it all and cause an increase in both hyperacusis and tinnitus - and even in a quiet house, there are always accidents that involve high frequencies. Sleep helps a bit but I'm not getting better over time like I used to. I've listened to a lot of people with hyperacusis and I've noticed people push their truths from very different perspectives and type of trauma. Sorry to be a bearer of bad news but I think it's quite important people realise it can really get a lot worse than they think, so perhaps they can avoid major setbacks. It can also be dangerous to push for a recovery if you have do have it really bad but try and go by other people's experiences.

I should perhaps add that I suffer from fibromyalgia so I think I'm predisposed to pain conditions, in other words, I should probably not compare myself with people who are otherwise healthy.

Has your pain hyperacusis improved?

 

[GoatSheep]

Well in extremely severe cases I've seen reports of people undergoing labyrinthectomy surgery for hyperacusis. The surgery is normally done for very bad Ménière's cases. It's not exactly a cure but it does eliminate all symptoms. Just at a great cost for it completely deafens whatever ear they treat for it is literally destruction of the cochlea.

Now I'd say that for anyone to seriously consider this they'd probably want to be a good few years into hyperacusis and either a very severe case or a case that continues to get worse no matter what they do. Also only for those with it in one ear or only really bad in one ear. I don't even think they would let someone do this procedure to both of their ears.

To be honest even I am keeping this option on the table for I only have problems in one ear and they are pretty bad and I've noticed strange increases of problems (worsening noise distortion, increased pain, and vertigo attacks).

How are you doing these days? Have you improved?

 

[haha ear go eeee]

Maybe it would work for some variants of hyperacusis, but not the pain kind I think. I spoke to a guy who had it done. He has pain hyperacusis and he said it made no change to his... of course we can't conclude that it won't ever work, just based of one case.

What kind of pain did the guy have? Was it more in his inner ear or middle ear?

 

[TheDanishGirl]

What kind of pain did the guy have? Was it more in his inner ear or middle ear?

I don't know. I don't think he stated which kind of pain he experienced.

 

[haha ear go eeee]

I don't know. I don't think he stated which kind of pain he experienced.

Alright, and what specific surgery did he have? Was it just a cochlear destruction? I'm asking because I believe he could still be having pain if the pain was in his middle ear.