Are There Severe Hyperacusis Cases Who Haven't Posted Success Stories?

To put it mildly, I am struggling a lot these days. One thing that has me freaked is that I haven't come across a single case of hyperacusis that resembles my combination of presentation (bilateral, 99% likelihood of autoimmune), severity (progressing to the point where I wear earplugs and earmuffs and don't move all day).

I haven't found one success story that comes close to covering my problem. My doctors have never seen this either. I guess I'm sort of wondering what everyone's opinion is on the lack of success stories.

I'm thinking out loud here, but given how traumatic this is, if I were to recover, I see it going one of two ways.

1) Writing a detailed success story, knowing how rough this is and how important inspiration is. The goal would be to directly prevent suicide.
2) Moving on, too traumatic to talk about. Too traumatic to put my (actual) name next to online. Too afraid of jinxing it.

Does anyone have any ideas about this question? I sometimes think it's selfish to go through something this rare and keep it to yourself. At the same rate, I may just do that. I don't know because I'm not there yet.

 

I also thought about this as well. I think if I do recover through the use of FX-322, OTO-413 etc then I think I would go with 2) initially then as the months and years go by after I recover then I may go with 1) and talk about the traumatic experience I went through.

I may also make a YouTube video about it to raise more awareness of these hearing issues.

 

First of all, I hope you recover as soon as possible. My hyperacusis is pretty old as well, and I lost hope to recover in the sense of regaining my sense of hearing as it was pre-hyperacusis. I am losing hearing progressively. It's pretty scary, as this is already having an impact in my work and personal life.

Pre-hyperacusis, apparently I had amazing hearing, although I never noticed. How can you know your hearing is so good? I think no one gives it a second thought, we just take it for granted.

To be honest I have lost hope about a recovery. Periodically and no matter how much I protect or how careful I am, I suffer a setback and my hearing deteriorates (I lose hearing, my tinnitus fluctuates etc). Hyperacusis, meaning jumping at a little sound, is pretty much gone for low and medium sounds, and this is a source of stress that got better.

However, the stress derived from not hearing well, not understanding what others say, straining to hear TV, missing words of speech in noise etc has substituted the stress from hyperacusis. The reactions to setbacks, the set of symptoms, pain, headaches, are more or less the same than when hyperacusis started. My view of my particular problem is this is degenerative.

There is also the psychological stress of anticipating losing a job, or losing friends because it is hard to hang out with them, or just becoming totally isolated due to hearing loss getting worse. That said, this is nothing compared to the extreme stress from severe hyperacusis. It is a different kind of stress, chronic as well, but milder, and more rational, about financial issues etc... and this changed because I thought, "if I have to lose my hearing so be it, but I still have to try to live a little, to do things, to keep being motivated, to travel within my possibilities etc"

Like you, I have been to countless doctors, and they said my case is very rare, due to fluctuating hearing, and also because my audiogram is not so bad.. mild hearing loss, maybe already moderate hearing loss in high frequencies, but the feeling I have about not understading TV, missing words, having a hard time listening in noise, is rare with that audiogram.

- Now I watch TV with subtitles, and when hyperacusis was at its worst I couldn't set it at minimum volume.
- I spent years without putting a phone near my ear. I used the cellphone rarely and set on speaker, at minimum volume and placed a bit far from me, always at home, never outside, in noise, where I would have my ears plugged. Now I can put the phone in my ear (years to be able to do this!).

I was never an extrovert, but I have become more isolated. I have a daily routine, pretty nice, with activities like going to the beach, watching a film, cooking.. I am not so bothered anymore about kitchen sounds that killed my ears. I needed to use earmuffs just to unpack my grocery shopping, and put it on the fridge, or to turn on kitchen appliances that beep. Now I can manage better, although I still use hearing protection for some beeps that have a nastier edge (higher pitch and kind of distorted sound, very annoying).

Things I did to take stress off me: move to another home, to a seaside town, simplify my life, try to enjoy the little things in life, save money, try to be financially solid (I have no debt and I own property) etc

 

@Zugzug... I am sorry you are struggling. I have days where I can't do anything. On those days I have to lie down with a hot pack around my neck and a cold pack on my head (ear/head burning/headache/louder tinnitus).

My hyperacusis keeps getting worse. I can't work, can't drive, can't shop, can't see friends, can't watch tv, listen to anything...
I don't leave the house except for medical appointments. Outside voices are too loud even with double protection.
Finding it harder to understand what my husband says to me.
How are you supposed to expose yourself to every day sounds when the pain is so intense?

@Juan
You said your problem is how it is degenerative.

That is how I feel about mine too. Every time I have a setback, it feels like I've lost more hearing ability.
Right now I wish the burning pain in the ears and head would go away. I have it... even in silence.

 

Thanks for the reply; I have found a lot of your posts helpful. Although I'm sure there are many differences between our ear problems, your story seems to be the closest to mine. Of course, we are both rares within rares so there's only so similar they are going to be. If you don't mind me asking, how exactly did you develop hyperacusis?

For the longest time, I've wondered if I have autoimmune inner ear disease. My reasoning is not just that I have hyperacusis and it presents like an autoimmune problems. But additionally, I have been chronically ill for 5 years with a boatload of autoimmune symptoms -- too many symptoms to list. My blood work is inconclusive, which is pretty common as the average time to diagnose say, lupus, is 6 years.

But if I did have autoimmune inner ear disease, I would expect it to present a little more like yours. In other words, the hyperacusis is a precursor to an inevitable progression of hearing loss. But that doesn't appear to be the case. To this day, I have stupidly good hearing. I'm talking like, with earplugs and earmuffs in, I can hear soft noises. I get that a leading theory of hyperacusis is hearing damage and the brain increasing central gain, but it seems like too much. It's hard for me to believe my inner hair cells are super damaged and I can still hear like this.

With this being said, I don't think I have "autoimmune inner ear disease" in the classical sense of inner hair cell damage, but rather a neurological manifestation of either Sjogrens or Lupus. I think my auditory nerve is experiencing demyelination. At this point, this is speculation. Another possibility, though unlikely, is that I have only outer hair cell damage?

Your presentation seems so much more logical (though I'm sure, really really shitty). Hyperacusis to hearing loss. I can't understand how I could have ear damage for this long (an entire year) and still not have hearing loss.

 

My god, where to even begin with the trauma? I am about 13 months in. I remember at the 3 month mark, when it wasn't even remotely close to as bad as it's been, I experienced an upswing and called my brother. I told him I would surely need counseling for PTSD. At this point, I am starting to get sincerely worried that even if I recovered, I will ever be happy again. I think making a YouTube video will probably be something I work through with a PTSD counselor.

And I see people whining about wearing a fucking mask during the pandemic. Try having your entire fucking life stripped away from you. I am starting to develop empathy problems that I never had before. There are still things that make me feel empathy, but it takes a lot.

 

Yes. Hyperacusis and hearing problems are tricky. There is a key difference to understand between quantity / amount of input and the quality of input, perceived quality of sound.

Sometimes a not-so-loud noise triggers the full set of symptoms and it is a false alarm, and then in 10 days you are back to baseline. Some other times there is damage and hearing worsens, tinnitus spikes, pressure comes back at full force.

However, the key thing to understand is that to lose hearing normally one has to be exposed to a very loud sound (with or without hearing protection). So here the factors at play are (i) decibel level, volume, (ii) distance to the sound, (iii) vibration (door slamming, loud firecracker), (iv) whether there is hearing protection or not (depending on sensitivity, if the sound is close by, hearing protection may not help at all)

 

I developed hyperacusis by working close to loud speakers at close range, also very bad sound, bad quality, distorted, feedback etc. That day when I got home I instantly knew there was something terribly wrong with my ears. There was a lot of pressure, and I had a big headache, and it was like something was pulling towards my throat and temples. Sounds seems muffled, deprived of richness and subtleties.

Then in a week I felt better. That same day (a week after) I went to the ENT for the first time in my life. The ENT just performed an audiometric test and tympanogram and said everything was fine, very good hearing actually. So I tried not to think about it, although I was very uncomfortable around sound, and perceived sound different than before. So I was not using hearing protection, and that's why I don't believe in TRT. I was walking around with severe hyperacusis for like 3 years! And it did not get better. I had no tinnitus at the time.

Then I started using hearing protection, earplugs and earmuffs and was able not to be hyper-vigilant or on-edge the whole day, just in case a noise happened... things got more or less stable for a few years, with the odd loud noise exposure... running into sound unexpectedly let's say.

Then I started losing hearing progressively due to one-off noises... till today.

I was looking at AIED, autoimmune causes... I suspect there may be something like that. Some genetic change or something, and my body attacks itself... however if you check one by one the classical causes of hyperacusis, all the autoimmune diseases and rare diseases that trigger it, there is always (in my case) some box that is not ticked, some item that does not match my experience. Many autoimmune diseases have skin marks or symptoms, or very obvious warning signs, and my experience does not match those...

My blood tests are usually ok. Only low on vitamin D, and once there was a positive for an autoimmune marker, but the doctor said that particular marker has to be interpreted together with the other result items of the blood work, and that it wasn't conclusive. That the other items were normal, so no autoimmune disease.

A note on hearing loss for the ones who do not suffer from it: losing hearing is not like hearing the same quality as you do now, but lower. No no no.. hearing loss means you cannot hear some specific sounds and also, this is, on top of that, you hear lower as well. So it means that the sounds get "blurred" and overlap each other. It is like seeing blurred, or not distinguishing letters when reading, or discerning sharp contours on an image.

 

It was exactly like that for me too. Actually years back I though that, in worst case scenario (see, I'm optimistic!), I would settle for mild hearing loss, meaning having trouble understanding people but still able to work. The trade off would be no earplugs and no worries. This was all in my mind of course... now I still use earplugs, although a bit less. With earplugs I understand more or less what people are saying. In a supermarket I understand the cashier, because the cashier really is yelling over supermarket music and the general noise around. In a quiet home, with earplugs of course I cannot hear TV at all (at normal volume) and if someone talks to me, I barely get what they are saying..

So I got the hearing loss, but not the benefits of an earplug-free life....

They can't be super damaged because you wouldn't hear. Most likely the is slight damage but today doctors don't know how to fix it, and your hearing system is amplifying.

I thought about that myself as well. I ruled it out because in theory a demyelinating disease would spread to other parts of the body, and hearing would be our least concern... I think ELA is demyelinating...

 

I struggle so much with pain hyperacusis as well.

Went for a walk earlier today, wearing my noise canceling headphones, the scream from a couple of seagulls above me was so painful I fell to the ground in agony. I can still feel it down my neck and spine.
Only we can understand the relentless torture of this condition. I had even taken 50 mg of codeine today which usually dulls the pain a little.

I am trying so hard to be proactive about it though because this is no way to live.
I really think cutting our tympanic muscle could take away the pain as its low threshold startle reflex is irritating our trigeminal nerve, sending pain impulses to the cervical trigeminal cortex.

I´m currently trying to get this done through my ENT, but many are reluctant to do it because there is so little experience and we lack the equipment to pin point that TTTS is the culprit.

Anybody know if they can perform, what is it called tympanometric test?? Where do you live?

My ENT is in contact with Dr. Westcott and she has actually stopped endorsing this kind of treatment and is now advocating coping strategies and Gabapentin/Pregabalin instead. To me this seem like walking backwards into the future.

I might try the spiral ganglion nerve blockade again, but this time inject botox instead of lidocaine. Also this is from Westcott´s research. One patient benefitted from this, so its hardly a well documented procedure. Lidocaine injection did nothing to me, but according to her botox might.

If our pain stems from the afferent type 2 fibers within our cochlea, I guess we are fucked and have to wait for maybe FX-322 to maybe help us.

I feel for us all in this tread. @Zugzug, @LindaS, @Lucifer, @Juan. I guess some of you are as suicidal as me. To not tolerate something that we are surrounded by all our awaking hours is just pure HELL!!!

I´m still in benzo withdrawal and can maybe hope for it becoming a little better as I heal, but I´m not holding my breath.

 

I don't understand how people with SEVERELY LOUD tinnitus can use earplugs and ear muffs (so) frequently.

I want to smash my head open the longer I wear hearing protection. I only use it if absolutely necessary because with no outside or external sounds... no masking at all and just loud ringing... kill me, please?

It does sound like various people here have worse hyperacusis than me. I use subtitles too and I wonder if exposing myself to certain noise and sounds (that I can/can't control) leads to some ear pain or not plus maybe prolonging 10/10 tinnitus which might have reduced to 8/10 or 9/10 severity otherwise. I don't know.

I hope I made sense. I consider my tinnitus much worse than my hyperacusis as bad as that is. I am just guessing but many here seem to have it the other way around? Or am I mistaken?

As for success stories, I suspect many people who improve don't bother with their personal story. They're just glad and grateful that they improved and leave. It would be nice to get a detailed experience posted but many just want to savor the improved state, maybe?

I don't really care about reading about someone else's success stories. It's great for them but unless it can apply to me somehow, I think it will just be depressing. Sorry. It's probably uplifting to some but I don't think it helps me.

 

I havent read of any succes stories for my case either. Which is pain hyperacusis, now with sore/full ears several hours everyday and most importantly, NOT any better 3 years on (the contrary actually)

All success stories I have read are people who had it get better in anything from a few months to maximum 2-2½ years. If you had hyperacusis that continues longer then that, without improvement it seems your screwed

 

My tinnitus strongly correlates with my hyperacusis. When my hyperacusis is bad, my tinnitus is quite bad as well. But yeah, during hyperacusis upswings, the tinnitus becomes fairly mild. You are right that earplugs/earmuffs and general head pressure makes tinnitus worse. But it's the price to pay for reducing some of the hyperacusis.

 

You're not. It's incorrect medical advice. The advice of "expose yourself to normal noises" is for the 1 in 10000000000 person who has misophonia and almost strictly an irrational fear of sound. Most people with hyperacusis have hard evidence that a lack of precautions is bad.

To be clear, I'm not denigrating misophonia. I have OCD myself (along with misophonia tendencies); irrational fears and reactions are no walk in the park. But it's a totally different medical problem.

 

I think success stories are important, but only convincing ones that are similar to our medical problems. I believe light at the end of the tunnel is important, especially for a condition this rare that no doctor can handle.

 

A dark horse in all of this that's not talked about enough is the quality of sound. This is very important, sometimes even more important than decibels.

 

Well, life is strange. After several years without travelling I went to the Lofoten Islands looking for peace and quiet. It was pretty good but things happen. I rent a car, I drive around in the middle of nowhere. There is only one cabin in sight. I like the view around. Park the car by the road border, near the cabin. Step out of the car to take a picture. Didn't notice the cabin garage was open. Get like 50 meters away from the car. There is a loud sound, a power saw. Comes from the garage. Now I have to either put up with it or run to the car, which is closer to the sound source. I get farther from the car. I wait. After a few minutes I am able to return to the rental car. Ears are in pain but thanks God at least I had them plugged.

Stories like this... I have a few... loud sounds in remote locations, or where there is nothing around. Sometimes, walking through a deserted forest... shit happens.

 

In my opinion there are a lot of dubious success stories. For me a success story means (i) someone had damaged ears, (ii) they had this problem for several years, (iii) they recovered.

A story saying "I felt bad two weeks ago and now I am fine", regarding hearing, is hardly a success story, excluding serious cases like SSNHL of course. But for hearing sensitivity... they did not have true hyperacusis in the first place.

 

I know but how often is significantly similar?

 

I know what ear pain is like and even though mine might be different, I know it's hell especially when on top of other things (in my case, severe loud tinnitus).

I don't know if "getting better" means the inner ear has healed or what but I had more ear pain from noise last year - that I could definitely link from a noise exposure but it's not like that as much now. My ear pain now sometimes just comes on suddenly so I often have to guess what happened. The severity just increases. It doesn't help that I live in a noisy area.
Okay, I am done. Hope yours gets better.

 

I would take one right now.

 

I don’t understand how doctors can confidently say sound exposure helps pain when they can’t muster up an explanation for what actually causes the pain in the first place.

It just doesn’t make sense. Seems like they’re just throwing what they have at us and hoping it sticks and if it doesn’t well then we’re not improving because we’re anxious and depressed.

 

Hi TheDanishGirl,

@Sevv posted the below link the other day (hope you don't mind me reposting it @Sevv), and I thought it was pretty encouraging. There are a couple of stories on there from people who didn't have improvements from pain hyperacusis for years.

https://hyperacusisfocus.org/hope/

Haven't read through all the stories myself so not sure how good they are, but hopefully it shows that there isn't always a time limit on improving.

 

@Juan :

At what point did your hyperacusis start to transition into hearing loss? Did it transition at all? In other words, was it like...you improved from hyperacusis (and still no hearing loss), then later noises directly caused hearing loss? Was there ever a moment where you could see the hyperacusis turning into hearing loss?

I am at the one year mark and my hyperacusis just keeps worsening. I am amazed that it hasn't turned into hearing loss yet. As you know, my problem is unclear so I don't even know what's damaged or if I will ever transition to hearing loss.

 

Hi ZugZug, it was a much slower transition. Due to the first hearing incident that triggered noise induced hyperacusis I lost maybe 15 - 20 dB at 6 kHz and 8 kHz. Doctors new that dip was not normal because I was hearing all the frequencies at 0 dB or -10 dB and then did not hear 6 kHz until maybe 15 dB at that time and 8 kHz until 20 dB.

After that initial assessment the audiometric tests were more or less stable for like 2 years, with minor changes maybe due to congestion, or a different audiometer. At the beginning I would have the full set of hyperacusis symptoms, fullness etc and my ears would come back to baseline after like 2-3 weeks, so it was hard to assess the state of my hearing. Pressure etc make you perceive sound different, but when these symptoms went away my hearing was more stable, so it felt like I heard better.

Later on I started very slowly getting hearing loss, over a period of like 6 years. This was all due to one-off exposures to noise, nothing long lasting, but they caused damage because my hyperacusis was so severe. I had really really bad hyperacusis. I could hear a person talking around me with my back turned to them and wearing earplugs plus earmuffs, so sound was cutting through earmuffs like a knife on butter.

At the beginning, when one gets hearing loss its like the sounds are not so amplified anymore. First of all, if a person lose hearing in the high frequencies like me, you hear like the "Dolby surround" effect, and the amplification of sound in the low frequencies, but the high pitches are perceived in a lower way. It's not only hearing for instance 8 kHz at 20 dB but the fact that one hears 8khz at a lower pitch, like if it was 5 kHz maybe...

When hearing loss progresses, lets say to -45 dB at 8 kHz, there are ambient sounds that you just don't hear well, or don't hear at all. Daily sounds around the house, like slippers on the floor, cleaning your hands in a towel, or getting dressed in the morning must be in lower frequencies, because I could hear them ok. Sound at and over 8khz are beeps of microwave ovens, the kitchen etc... these cut through my head at the beginning. I had to wear earplugs or earmuffs around the kitchen, and double hearing protection to fry stuff in a pan, and I would still here those sounds A LOT. Now it is no problem. I mean, if I forget earplugs and fumble with the kitchen I am more or less ok. Still use earplugs to fry for instance... but I don't use hearing protection anymore for doing the dishes. I can place a dish on a counter not loudly, but not gently and it is ok, and I can close cupboards again, just normally, and it is ok, without earplugs, and... this is very important: this is not due to habituation but to hearing loss.

The turning point in hearing loss, when it becomes a problem, is when you have to pay a lot of attention or extreme attention to understand some people, just because they have a certain voice pitch or because there is a bit of background noise. Before, when hearing loss was very mild, or mild, in high frequencies, this was not a problem.

Actually before I got hearing loss, I never understood 2 things related to sound:

- why people bought expensive home cinemas (surrounding sound speakers) or very expensive hi-fi when there is too much enhancement you don't need. The answer is we all perceive sound differently and if a person has amazing hearing an equipment that adds qualities to sound, enhancing lows or highs, etc is just annoying instead of a pleasure to hear.

- why people referred to "paying attention" and connected it with the ability of hearing, as for me attention (thinking about whatever) and hearing (input of sound, deciphering of sound and processing of sound) were independent activities that could be carried out at the same time without thinking at all about it. This means I could be at a restaurant and hear my companion and also hear what people at the other two tables around were saying, without really having to concentrate or make any effort. I could walk on the street and hear what passerbys were saying. Or I could look out of a window and when someone talked to me I did not need to ask them to repeat what they just said, I had heard it. And now after years of slowly progressing hearing loss this is not possible anymore. So my guess is that people who link attention to hearing just have poor hearing.

Hope that helps...

Juan

 

I find this really interesting. High pitched sounds are SO difficult. I wear earmuffs and earplugs and if I just tap a fork on my plate as softly as my muscle control will allow, it still bothers me. Even chewing bothers me. I eat so slowly.

For the love of the universe, I wish my hyperacusis transitioned into hearing loss. Of course, this too is exceptionally depressing -- I don't want to sound like I'm glamorizing it. Both are tragic. But right now, I can't move, leave my house, take my earplugs/earmuffs off, converse, drive, go for walks, or really do anything at all. Typing this message is difficult.

I'm a super introverted person and all of my hobbies reflect this. My life would be reduced a lot with hearing loss, but damn, at least I could breath, exercise, go for walks, f***king anything at all other than sit in a chair all day in silence, wishing I was dead.

 

I don't know if my hyperacusis was similar to yours or others but I mostly have ear pain. Sometimes I can say with high probability that a noise caused or contributed to increased ear pain but other times I can only speculate and I am not sure what happened or why (increased) pain suddenly intensified.

I would guess, a year ago my hyperacusis was more similar to many on here. A loud noise or sound would always lead to pain but that frequency and automatic cause isn't as bad now. It's not saying much because of my ear pain is still bad but I think the traditional hyperacusis isn't as severe. So, maybe that means it can improve because I remember when I was ****ed everytime there was a loud noise.

I still carry ear plugs in my pocket and bring muffs with me when I am driving.

 

Hearing loss is pretty bad too. I don't recommend it either haha.

 

@Zugzug

Don't know how to do the quote thing. Your comment... "at least I could breath, exercise, go for walks,.... " touched my heart. I'm sorry you are unable to go for walks.

It's definitely not the same, but here is a photo where one can take an imaginary walk. A computer file of images such as this, with lakes, mountains, streams, cabins in the woods, night skies, etc.... may not be the same as the real thing but may bring some comfort. I know it does for me.

 

Looks a lot like the Baltic countries, although it could be anywhere really.