Anyone with Severe Hyperacusis Have a Completely Idiopathic Cause?

[Zugzug]

I've been on these forums for about 8 months since developing hyperacusis, and have gotten a feel for who are the "regulars." It recently occurred to me how unusual my case seems. From what I've seen, almost everyone on here has gotten tinnitus and hyperacusis from (in no particular order): loud noise exposure, drug withdrawal (like Benzos), physical problems (jaw,neck,etc.). I haven't read any stories of people who developed severe versions after stressful years, chronic illness, autoimmune conditions, or other idiopathic neurological issues that had nothing to do with noise exposure.

My H has been very severe. I can't talk, whisper, work, travel (easily). Even showering is often difficult. During bad spells, I can't even handle the sounds of keyboards typing with earplugs and earmuffs. Moreover, I get pain all over my head, ears, and cheeks. Every time I try to whisper, I get a headache. Of course, this is accompanied by very loud T, which correlates strongly with the severity of my H.

My problem began from the following sequence of events.

1) Had chronic illness (also idiopathic) that gave me flulike symptoms, physical pain, dryness, and many other symptoms for 5 years.
2) Had an extremely stressful year (finishing my Ph.D., house hunting, landing a job). The stress then ended abruptly and I went from being super stressed all the time to having basically no stress -- all within a week.
3) Within 2 days, I developed balance problems, tinnitus, and hyperacusis. The balance problems have faded and the tinnitsu and hyperacusis have steadily gotten worse, with periods in between of them improving and worsening dramatically.

Since my tinnitus and hyperacusis are 100% symmetric and my chronic illness resembles an autoimmune presentation, I've always assumed that is what it is. However, I went on high dose prednisone and didn't see improvements so I'm having some doubts. This is complicated since prednisone reduces inflammation, but is awful for the brain. It's possible that I was helping part of the problem while offsetting with a more reactive brain. I say this because after stopping the prednisone, I am seeing some improvement.

Moreover, I am seeing a hyperacusis audiologist (who likes sound therapy, but is not a salesman) and he says my situation is unusual. I guess I am just wondering if there's anyone out there with chronic, severe H with idiopathic cause -- much like a condition like, say, epilepsy.

I've gone through the gauntlet of illnesses. I've treated Lyme disease extensively (and tested negative) with antibiotics -- didn't do anything, it was like taking a sugar pill. I don't have symptoms of MS like visual problems, motor skill issues, bladder problems, numbness, etc. If it is an autoimmune disease, it almost surely isn't lupus based on my blood markers. The only illness that makes any sense at all, and is consistent with the chronic illness I had prior, is something like chronic fatigue syndrome, which is regarded as being like an autoimmune disease, but with an idiopathic cause.

If there is anyone out there who didn't get this from noise exposure, did antidepressants help? I am about to try Cymbalta to see what happens.

 

[GregCA]

If there is anyone out there who didn't get this from noise exposure, did antidepressants help? I am about to try Cymbalta to see what happens.

I had H that was due to otosclerosis. Like you, whispers and keyboard "clicks" would be too much to handle as well.

I personally declined ADs as I didn't feel like my brain was "out of chemical balance": I felt my reaction was a pretty normal one when you go from being able to hear silence and relax to have a screeching noise that you feel you can't escape and will carry for the rest of your life. Panic was warranted, and if anything, was an expected reaction from a healthy brain. The benefits, to me, did not outweigh the risks, so I decided against them. I am quite glad I didn't use them

Each case is different, so you need to weigh in pros and cons and decide what's best for you.

Good luck.

 

[Zugzug]

I had H that was due to otosclerosis. Like you, whispers and keyboard "clicks" would be too much to handle as well.

I personally declined ADs as I didn't feel like my brain was "out of chemical balance": I felt my reaction was a pretty normal one when you go from being able to hear silence and relax to have a screeching noise that you feel you can't escape and will carry for the rest of your life. Panic was warranted, and if anything, was an expected reaction from a healthy brain. The benefits, to me, did not outweigh the risks, so I decided against them. I am quite glad I didn't use them

Each case is different, so you need to weigh in pros and cons and decide what's best for you.

Good luck.

Thanks for the reply. Don't get me wrong, I know the fact that I am depressed provides very little information -- it's like, of course I'm depressed, I can't be around any sound. I have steered clear of Benzos, but was thinking an AD might kill two birds with one stone. I want to try one anyways for coping purposes, and it may be related to the cause as well.

 

[FGG]

What antibiotics were you on for Lyme? Antibiotic ototoxicity can cause tinnitus and hyperacusis, sometimes very severe.

Lyme itself can cause either unilateral sudden hearing loss or bilateral slowly progressive loss. Is your hearing otherwise normal?

 

[Horrorpopz]

@Zugzug
Hey man, my hyperacusis is due to noise exposure (probably), but I've met a few people with hyperacusis due to idiopathic causes, some of them had loudness hyperacusis, some pain hyperacusis.
Keep in mind that there're many causes of hyperacusis, neurologic, autoimmune diseases are among them (also for tinnitus).

Be careful with the antibiotics, they're heavily ototoxic, the ADs too but less.

The fact you don't know what brought it up might be good, cause if you find out what is it, treating it could alleviate or vanish your hyperacusis...

Hang in there, if it came out of nowhere it may go as well, who knows?
Hope you can discover what's making this mess.

PS: I have extreme pain hyperacusis, I really feel your pain and despair about any sound giving lingering pain, even whispering

 

[Zugzug]

What antibiotics were you on for Lyme? Antibiotic ototoxicity can cause tinnitus and hyperacusis, sometimes very severe.

Lyme itself can cause either unilateral sudden hearing loss or bilateral slowly progressive loss. Is your hearing otherwise normal?

Thanks for the reply. The antibiotics didn't play any role since I had problems long before, during, and after antibiotics. Also, I did a Lyme disease protocol (antibiotics, special diet, etc.) back in 2015 when I came down with chronic illness; I didn't notice any changes. There are also many other reasons why it doesn't resemble Lyme; no brain fog, joint swelling, etc.. But I appreciate the input, and it was definitely something I explored heavily.

 

[Zugzug]

@Zugzug
Hey man, my hyperacusis is due to noise exposure (probably), but I've met a few people with hyperacusis due to idiopathic causes, some of them had loudness hyperacusis, some pain hyperacusis.
Keep in mind that there're many causes of hyperacusis, neurologic, autoimmune diseases are among them (also for tinnitus).

Be careful with the antibiotics, they're heavily ototoxic, the ADs too but less.

The fact you don't know what brought it up might be good, cause if you find out what is it, treating it could alleviate or vanish your hyperacusis...

Hang in there, if it came out of nowhere it may go as well, who knows?
Hope you can discover what's making this mess.

PS: I have extreme pain hyperacusis, I really feel your pain and despair about any sound giving lingering pain, even whispering

Thanks for the support. The fact that it's idiopathic is both frightening and inspiring. It could mean I have bad things to come or it could mean I find a lifestyle that improves it dramatically. I would imagine getting it from loud noise exposure is probably frightening in a different way -- you know what did it and it can't be undone. I guess we have to keep fighting the good fight.

 

[Juan]

The only illness that makes any sense at all, and is consistent with the chronic illness I had prior, is something like chronic fatigue syndrome, which is regarded as being like an autoimmune disease, but with an idiopathic cause.

I dont want to disappoint you but my personal feeling after seeing a ton of doctors, including ENTs, neurologists, rheumatologists etc is that when they classify something as an "autoimmune disease" is because they have absolutely no idea of how to deal with it.

Some doctors focus on the symptoms to treat hyperacusis or tinnitus, which means basically admitting they wont find the root cause, or the area that is damaged. ENTs will typically say that hyperacusis due to loud noise exposure means damage to the cochlea and hair cells. But for instance there is test to assess how the cochlea functions, and it is not loud. I had the test and everything was fine, but the root cause of my problems seems to lie inside the cochlea, which cannot be observed or repaired.

I have tried some medications over the years, on and off, trial and error, just to try to feel better or see if any meds would help. Right now I am on a high dose of prednisone, who is doing pretty much nothing but giving me side effects.

So my conclusion about hyperacusis is that is this is a piece of shit, but has to be accepted as it is, and one has to come to terms with the fact that this cannot be solved or cured. Therefore, if we are going to focus on having a better quality of life, the best way to go is just dropping all pills and trying to make adjustments to one's life to make it more bearable, living in a quiet place, trying to have some distractions, some leisure time, without being surrounded by noise that can make this condition worse. Sometimes one can indulge a bit, go to a louder restaurant maybe.. but there is a Price to be paid, in terms of more tinnitus, bad hyperacusis for a week or so, or losing hearing, at least in my case.. However, we only have one life and have to try to live it as best as possible, within our limitations of course.

 

[Zugzug]

I dont want to disappoint you but my personal feeling after seeing a ton of doctors, including ENTs, neurologists, rheumatologists etc is that when they classify something as an "autoimmune disease" is because they have absolutely no idea of how to deal with it.

Some doctors focus on the symptoms to treat hyperacusis or tinnitus, which means basically admitting they wont find the root cause, or the area that is damaged. ENTs will typically say that hyperacusis due to loud noise exposure means damage to the cochlea and hair cells. But for instance there is test to assess how the cochlea functions, and it is not loud. I had the test and everything was fine, but the root cause of my problems seems to lie inside the cochlea, which cannot be observed or repaired.

I have tried some medications over the years, on and off, trial and error, just to try to feel better or see if any meds would help. Right now I am on a high dose of prednisone, who is doing pretty much nothing but giving me side effects.

So my conclusion about hyperacusis is that is this is a piece of shit, but has to be accepted as it is, and one has to come to terms with the fact that this cannot be solved or cured. Therefore, if we are going to focus on having a better quality of life, the best way to go is just dropping all pills and trying to make adjustments to one's life to make it more bearable, living in a quiet place, trying to have some distractions, some leisure time, without being surrounded by noise that can make this condition worse. Sometimes one can indulge a bit, go to a louder restaurant maybe.. but there is a Price to be paid, in terms of more tinnitus, bad hyperacusis for a week or so, or losing hearing, at least in my case.. However, we only have one life and have to try to live it as best as possible, within our limitations of course.

When it comes to autoimmune diseases, I've learned that there's a difference between a bona fide well-known autoimmune disease and a whole class of disorders which basically fall into the category of idiopathic. The immune system and inflammatory response likely plays a role, but it's a complicated one. I think that true autoimmune diseases, in the sense that the immune system is programmed to attack healthy tissue, is definitely a real thing; we need some novel gene therapy to reverse it.

I'm definitely not looking for a cure. It doesn't really make sense that I would take a supplement or drug and it would just go away. But I have no semblance of a life, and sadly, I've watched the phases of depression consume me. It started with sort of a panic over the symptoms and missing work. Now it's in the phase of sincerely wondering if I will ever be able to hold a conversation again 90+% symptom free.

While I've had two "mini-recoveries," it is worse today than it was in August. Running out of tools is frightening. Prednisone is a super powerful anti-inflammatory so if that doesn't help, that's not a good sign. Moreover, if ADs make it worse, then mood stabilizers are ineffective. In short, I can't talk, work, exercise (also makes it worse), or really do anything at all. The depression is so deep that it no longer feels temporary or irrational, but rather just a reality of now having a super miserable life.

As an aside, it absolutely kills me knowing what this is doing/going to do to my spouse. She thought she was marrying a career-driven person who wanted to be a father. Instead, she got a vegetable in our 20's.

 

[Juan]

Now it's in the phase of sincerely wondering if I will ever be able to hold a conversation again 90+% symptom free.

I am sure it is going to get better or change, or you will somehow accommodate to this condition when it evolves, because it evolves over time. You are only 8 months into hyperacusis, probably in the most severe phase. I was there like 9 years ago... so it is just a phase on this path.

It is important that you adjust your life to this new reality as fast as possible, and as radically as you can do and afford. For me it meant relocating, taking a big pay cut, etc... but it was worth it. Fast forward a few years and I came back to a more demanding position, way better paid, at a louder place, and it has taken its toll on my ears. If I could go back, I would have just stayed in the quiet near the sea. However, even in quiet places you will encounter nasty noise, renovations in the vicinity, or in the neighbourhood, the odd public works.

No place is totally safe and no place is that quiet, since town halls like wasting taxpayers money in the most stupid things, and making noise pretending they are doing something for the community.

 

[Horrorpopz]

@Juan
How are you nowadays?
Did your pain hyperacusis get better?
Sorry for asking

 

[Juan]

@Juan
How are you nowadays?
Did your pain hyperacusis get better?
Sorry for asking

Hi, this is part of an answer I wrote for another hyperacusis sufferer who also asked:

In my particular case the condition worsened due to not using hearing protection on ordinary situations (walking on the street etc), so my hyperacusis went from moderate to severe and I was housebound for the most part of about 1,5 - 2 years.. I have had H for a long long time, so this means most of the time I have been able to go out and being ok. House bound means I would be able to leave home maybe 2 or 3 times a week, just to shop for groceries or go for a quiet walk. However, I continued working, but I had changed to a less stressful position in a very quiet environment. I had also relocated to a quiet town by the seaside.

The things that made my hyperacusis worse and chronic were single one-off noises, exposure to the very loud noise that sometimes happen by accident. Minor construction works around, etc So another advice: if you do notice beforehand there is some serious noise, NEVER go near it, even if it is the shortest way, and even with double hearing protection. Always try to find a detour that allows you to be further from the noise source. In my particular case noise at that dB level would go through earplugs and earmuffs like a knife on butter. I believe your case is different for this, because you report a worsening on your hyperacusis but you cannot point out a single episode that triggered it, so it is not the same thing as mine in this regard.

To sum up, my hyperacusis was very severe, then it improved pretty much by itself due to hearing protection, moving to a quieter place and adjustments to lifestyle. I had like 2 ok years, and then it worsened again, this time coupled with tinnitus (which I didn't have at the beginning) and progressive hearing loss.

Now my main concern is progressive hearing loss. Very loud sound is still very harmful to me, as years back although ironically I dont hear it that loud any more, but the volume and the vibration it carries is the same anyway, so I guess that's what's impacting me...

My feeling is there is a good chance of recovery from hyperacusis at the very beginning. Maybe some quick corticoids are a life saver when you are there. But on the other hand many ENTs are not able to identify hypercusis on day one, so it is hard to have proper medical care when one needs it, or good advice.

 

[__nico__]

I realize that this is an old thread but I would say that my cause of hyperacusis is somewhat idiopathic and maybe autoimmune, but this is just theorizing + the fact I've had immune problems in the past. I was on a course of prednisone for most of November, and a few days after the course ended, so still in the half life of the drug, I woke up with diplacusis. So I feared maybe I had an acoustic trauma of some kind, even though I was not exposed to any terribly loud noises. Went on prednisone again... at the end of that course I had another major worsening of hyperacusis. Surely this would be indicative of an autoimmune condition?

This thread describes something similar to my case, I have almost all the symptoms described here.
https://www.tinnitustalk.com/threads/experiences-with-autoimmune-inner-ear-disease-aied.43696/
(hopefully the link will not glitch)