Pain Hyperacusis Recovery Rate?

The success stories for hyperacusis seem few and far between. Those that do wind up recovering to a sufficient degree to resume their normal life seem to only have some less severe form of loudness hyperacusis. This makes me think that noxacusis is a more severe form of the condition with more damage involved.

Additionally, the people that have been struggling with hyperacusis for 10+ years mostly seem to have the pain version. Is this due to a selection bias of only seeing the negative online, or is it true because the success rate seems around 1%?

I find that the condition needs total silence as the only time I've worsened is by trying to "desensitize," however this is impossible in my current living situation.

What are the chances/time frame of people like me recovering enough to do things like school, work, etc and not be housebound?

 

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.

 

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

 

I can talk out of personal experience. I would say around 2 years.

If you have severe pain hyperacusis, buy good earmuffs, and earplugs, and use them. And even so, my personal experience indicates it is possible to get lasting hearing damage (hearing loss, down the road) even using double protection.

Also depending on what you do for a living, work conditions can be challenging. We can choose not to go to a restaurant or have coffee or tea at home, but we cannot really choose not to work (at least not me). One has to earn money to get by.

 

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.

 

I find that the word pain is too loosely thrown around. Some people have loudness hyperacusis and refer to sounds as being painful. Some experience ear burning as in “hot ear” (can be linked to anxiety) and that’s completely different than deep inner ear nerve burning that comes from an acoustic trauma.

I don’t mean to gatekeep hyperacusis but someone wise once told me even mild cases feel severe. That’s why you see so many stories of people curing their severe hyperacusis with TRT when in reality theirs was mild and like you said...probably healed with time. Which is awesome, I’m happy people heal but then th ose same people push the whole “limbic response” BS theories on more severe cases and tell us we’re not healing because we’re not trying hard enough.

 

Glad to hear about your recovery. I am not even looking to fully heal at this point, just want to resume daily activities.

 

This is the problem when non-experts reply and speak with authority about issues they are not equipped to answer correctly. Someone may read that there is no hope and be demoralized. I have read personal accounts of many people improving with or without treatment. One person has seen improvement in three weeks, others it takes longer.

 

This depends on what people call "hyperacusis" and what people mean by "recovery" ;-)

 

I think it would be more accurate to say "This depends on the severity of hyperacusis and what people mean by recovery." In my case, I started with a mild case of hyperacusis (constant burning pain & fullness but still able to do most activities with the help of earplugs) and in a span of 2 months I have recovered to the point where I only have a mild, nagging discomfort for a few hours after loud or high-frequency noises. My ears still feel fragile and irritated even on good days, but I feel much closer to "normal" than I did just a month ago and if things don't get worse I would be OK dealing with this the rest of my life.

 

During these two months on your path to recovery, have you been exposed accidentally to any impulse sounds like loud beeps, car horns, power tools, sirens...?

 

I have, but either with earplugs in or at a relatively safe distance. The most painful noises I was exposed to were screams/shrieks from my young kids, and those certainly set me back a few times. Overall, I feel pretty confident that being cautious with hearing protection helped speed my recovery. I tried pink noise at first but stopped after a week because it left me feeling worse.

 

It sounds like you are on a good track to recovery, since impulse and loud sudden noise are the most challenging to deal with while having hyperacusis.

 

I have hyperacusis and it's difficult to be a mom and do normal mom things. Can I ask are there any limitations you have now? Do you wear earplugs outside the house? Do you have tinnitus?

Thank you~
twa

 

I still can't really watch much TV or listen to music. Most everyday sounds outside of the house are okay although sometimes I wear earplugs. I have tinnitus but it's extremely mild so it doesn't bother me.

 

Thanks for the reply. Can I ask how long you had hyperacusis? I see your tinnitus is from 2011.

Thank you,
twa

 

Originally 2016 but I recovered and then had a setback last year, end of 2019.

 

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.

 

I'm curious about what kind of setback you had and what caused it?

It's just kinda crazy to me if you went back to a normal life for 3 years, when the world is so noisy, then finally had a setback 3 years later?

I can't even go outside without something horrible happening :/

 

Exposed to a loud car stereo for a few hours and then I had been to a loud party the night before. I mean, yeah the first time I got hyperacusis I recovered in like 3 months so it was, on reflection, a very 'mild' first-time noise-injury. (and 3 months is like light years in hyperacusis terms lmao). I still had certain triggers but tbh that was sort of under control as it mostly consisted of activities that were avoidable e.g, nightclubs etc. Now and again, I would experience 'mini-setbacks' e.g. when exposed to a laptop speaker that was at a high volume it would be unpleasant and I'd experience mild pain symptoms but only for a few weeks at most.

There are stories of people (e.g. on the Hyperacusis Research website) who recover almost fine after a first-time hyperacusis episode, live a mostly normal life for years, and then push it a bit too much and get a proper setback. I think that's where the danger lies - a first-time acoustic trauma can recover to the extent where you can almost trick yourself into thinking your noise threshold is 'normal' when actually it's not and you're always susceptible to further trauma.

 

Did you ever have issues with car horns, motorcycles, ambulances? It seems I can't go anywhere without those just materializing wherever I am, even in fairly isolated areas.

Yeah I recovered from hyperacusis in a week and went on to do loud activities, just because my cause was so abnormal and I didn't know what was going on, and people convinced me it was "just stress and anxiety". Paying for it dearly now.

 

I didn't really have trouble with those noises per se as they are quite transient so it didn't really affect my ears. My issues seem to stem more from constant, more moderate noise levels e.g. my laptop speakers at like 10/100 volume for 20 minutes will give me worse hyperacusis symptoms than a car horn or ambulance siren for a few seconds.

 

Were your issues with laptop speakers always a delayed onset? And was it only moderate volume that triggered it or just speakers in general at any volume?

 

The facial pain (sunburn feeling) tended to be delayed but my ears would start to feel "raw"after only about 20 mins and my tinnitus would become more sharp and reactive. It definitely seems to be triggered by even low volumes which is ridiculous so it must be a certain frequency to pitch. It's better now but still not great and speakers generally just feel too high-pitched and jarring. I'm not sure if this would be classified as distortion or not.

 

Hello Moss.

I am sorry to read about your pain.
What do you mean by medical trauma?
How are you pulling the day off? Can you work?

 

Hi there

I had surgery but things went wrong, and so I was subjected to all sorts of horrific experiences including several bouts of sepsis before they were able to diagnose and repair the damage three months later. I had about two months worth of really strong IV antibiotics. At this point, the hyperacusis seemed a bit worse, but not that much. Later in the year, I had another surgery for something quite different.

I’m sort of glad I got all out of the way before COVID-19 but in terms of hyperacusis and tinnitus, things went downhills after that last surgery. I think my immune system hasn’t coped so well and that the increased sound sensitivity (nil tolerance in fact) is because of all the stuff my body had to deal with. I’m already on permanent disability because of a genetic disease that often does involve this kind of trouble (autoimmune responses and a lot of pain). So I just carry on my quiet life and avoid subjecting myself to sound. I don’t subscribe to the idea that silence is harmful. I really think there are deeper issues at play and fixing them at least partially is going to take time, patience and perhaps something like gene therapy. A long life of medical problems has taught me patience. Yes I do worry about life after COVID-19 but you just have to try and take a step at a time.

I was researching Mast cell activity the other day and found this passage about hyperacusis - especially the end of the second paragraph offers an interesting interpretation of autoimmune activity.

 

Wow, you described EXACTLY what my hyperacusis is like (both the trigger and symptoms). Mine was caused by sitting too close to my guitar amp while playing with distortion at a very low volume (quiet enough to not wake my kids in the next room). And the pain I experience is the rawness / burning in my ear canal. Thankfully, after an unbearable first 4-6 weeks it has subsided to the point where I can live a normal life as long as I am cautious and use earplugs as needed. So far my setbacks have only lasted a few days... I'm hoping that remains the case

 

You're the first person I've noticed who's hyperacusis is like mine, so I wanted to ask you a couple questions.

1. Do you do do sound therapy like white noise?

2. Do you have ear clicking/static? If I expose myself to normal sounds like conversation for more than 10-20 minutes, My ear starts to click in response to noise. I've always interpreted it as my cue to remove myself from the noise. Lately though, it's been happening in response to even quieter sounds like the refrigerator and even my sound therapy noises. I don't know if I should quit doing sound therapy or just habituate to the clicking. Have you had any experience with this?

 

I didn't do any sound therapy and haven't really experienced ear clicking although I still get a broken speaker sound/crackling in response to certain noises.

 

Yes, that's it. The broken speaker analogy is a better way to describe it than I did. I'm hoping it's a separate issue related more to my eustachian tube issues than to hyperacusis itself, but the fact that it comes on gradually from noise exposure just like my hyperacusis does gives me some doubt about that. So your crackling doesn't get worse when you expose yourself to sound for too long, like your laptop speakers?