Are There Any Success Stories for Pain Hyperacusis / Noxacusis?

[LindaS]

I have come across many success stories for tinnitus and some for hyperacusis but looking specifically for success stories from pain hyperacusis/noxacusis. Are there any out there?

 

[weab00]

Wondering the same thing. Most success stories I see are from relatively minor cases. Makes me think that at a certain point you're too far gone, since there are far more chronic hyperacusis sufferers than recoverees. Really hope this isn't the case though.

 

[Orions Pain]

Wondering the same thing. Most success stories I see are from relatively minor cases. Makes me think that at a certain point you're too far gone, since there are far more chronic hyperacusis sufferers than recoverees. Really hope this isn't the case though.

People do improve to a degree but I think the majority of those with actual severe, chronic Noxacusis understand that they walk a very thin line, so they don't return to post success stories

Lots of those with chronic pain still experience it years out, but they learn how to manage their condition and adjust their lives to it. Success is super subjective too

You're right that most success stories do come from mild cases. As someone once told me, even mild cases think they're severe. Perhaps I'm just sensitive but I feel like the psychological impact alone from having severe H would leave you scarred for a long time.

It seems like 8 months to a year is when people begin to see improvements. In my H journey I've spoken to many who thought they were severe but a year later are relatively okay.

As you guys have seen, success story posts are rare but we have to keep in mind that lots of people probably just don't wanna jinx their situation.

 

[weab00]

People do improve to a degree but I think the majority of those with actual severe, chronic Noxacusis understand that they walk a very thin line, so they don't return to post success stories

Lots of those with chronic pain still experience it years out, but they learn how to manage their condition and adjust their lives to it. Success is super subjective too

You're right that most success stories do come from mild cases. As someone once told me, even mild cases think they're severe. Perhaps I'm just sensitive but I feel like the psychological impact alone from having severe H would leave you scarred for a long time.

It seems like 8 months to a year is when people begin to see improvements. In my H journey I've spoken to many who thought they were severe but a year later are relatively okay.

As you guys have seen, success story posts are rare but we have to keep in mind that lots of people probably just don't wanna jinx their situation.

I find it impossible to avoid setbacks. Literally any sudden loud noise will set me back. Really starting to dash my hopes of recovery.

 

[Born To Slay]

I find it impossible to avoid setbacks. Literally any sudden loud noise will set me back. Really starting to dash my hopes of recovery.

I felt the same way when I first got hyperacusis. Recently I've started to be able to listen to music again quietly. Protect your ears and anything's possible and don't forget the stuff in the pipeline.

 

[ShaunR]

Hi,

Watching this thread with interest too.

I've had weird ear symptoms for almost 4 months now. Started as very painful jaw and face after a loud noise.

Now I have achy face jaw and some kind of weird inner ear sensitivity going on (feels tingly).

Things have improved but it's been very up and down and I think the only reason they feel to have improved is because of the Tegretol the Dr. prescribed.

No loudness hyperacusis.

Shaun.

 

[weab00]

I felt the same way when I first got hyperacusis. Recently I've started to be able to listen to music again quietly. Protect your ears and anything's possible and don't forget the stuff in the pipeline.

How many months did it take for you to start feeling like you were getting better instead of worse?

 

[Orions Pain]

I find it impossible to avoid setbacks. Literally any sudden loud noise will set me back. Really starting to dash my hopes of recovery.

I'm so sorry. It's so tough to navigate this thing, isn't it When you say setback, what do you experience?

 

[Born To Slay]

How many months did it take for you to start feeling like you were getting better instead of worse?

Felt like I was getting worse the first 3-4 months, then I felt like I started to improve, it's been up and down but I think the trajectory is slowly upward. The fact that the last few weeks I've been able to tolerate music when I seriously couldn't for 11 months or so, is a good sign. The setbacks used to be constant also. It'd feel like I'd get them once every other week and it'd take a week to recover. Now I have only had one nasty setback since June and that one went away faster than the others. So I wouldn't lose hope for your condition. You could get better naturally or you could get better when the treatments that are coming our way. I know it's dark, I went there.

I spent my first few months googling the whole internet trying to find an answer but after a while, I just kind of accepted it and now even though I hate it and wish it was gone more than anything, I'm able to find happiness in life while I wait for a cure. I hope that you can do the same.

 

[weab00]

I'm so sorry. It's so tough to navigate this thing, isn't it When you say setback, what do you experience?

Sound distortions, painful stabs in and around the ear, pricks in my ear, reactive tinnitus, increased tinnitus volume, inability to consume any video media or music, and more.

 

[Orions Pain]

Sound distortions, painful stabs in and around the ear, pricks in my ear, reactive tinnitus, increased tinnitus volume, inability to consume any video media or music, and more.

Do you have a baseline of pain and it improves slightly, and then setbacks cause the same cycle of symptoms?

Or does the pain get worse with each setback (new peak levels of pain) without going down?

 

[weab00]

Do you have a baseline of pain and it improves slightly, and then setbacks cause the same cycle of symptoms?

Or does the pain get worse with each setback (new peak levels of pain) without going down?

It's a cycle. But for example I have a dog and get so anxious about a setback every time she barks. I don't know how to live my life, I spend the whole day in my room and am still getting worse despite resting my ears. I don't get it.

 

[Orions Pain]

It's a cycle. But for example I have a dog and get so anxious about a setback every time she barks. I don't know how to live my life, I spend the whole day in my room and am still getting worse despite resting my ears. I don't get it.

I'm sorry. I definitely understand what you are going through. Look at it this way, your hyperacusis is very fresh and I know people hate hearing this but it is possible that you will improve. I wouldn't view these things as "setbacks" but more of your ears just being sensitive and reacting to those situations such as your dog barking.

It's terrible to feel trapped at home but at least we have COVID-19 to let us rest a bit and it's slightly easier for our mental health aspect because we're not missing out on much. If your hyperacusis is cycling like that it doesn't seem like it's getting worse overall. Ears heal very very slowly and progress won't be noticeable with each day or week and spikes are inevitable. It's not a linear recovery. Hang in there friend.

 

[LindaS]

@Vassili

How are you doing these days? Is it next month that you see your neurologist?

 

[LindaS]

@Zugzug

Not sure, but I thought I read you had noxacusis that went away.
If, this is correct, how long did it take to go away?

If I am mistaken, I am sorry for that. Just trying to find some hope for all of us who suffer from pain hyperacusis/noxacusis.

 

[LindaS]

@serendipity1996

I believe I read that you had pain hyperacusis but it has improved?

How long did it take to improve? Did you do anything specifically to improve?

(Just wanted to start this thread for anyone suffering pain hyperacusis/noxacusis to find some hope).

 

[Marin]

I find it impossible to avoid setbacks. Literally any sudden loud noise will set me back. Really starting to dash my hopes of recovery.

Same. I live with a husband, two children, and a large dog which make loud surprise noises impossible to avoid. I get jealous when I read about people slowly reintroducing themselves to sound. It's so hard to do in certain living conditions.

 

[LindaS]

@Marin

Our tinnitus & hyperacusis situation sounds very similar. Not sure what kind of ear plugs you have. I have custom musician ear plugs so I can still hear sound but they really help cut the bird noise when outside. I find being outside in nature is the one thing I can tolerate when I can't tolerate much else. (Still can't listen to music or TV or sound machines).


Hang in there

 

[Marin]

@Marin

Our tinnitus & hyperacusis situation sounds very similar. Not sure what kind of ear plugs you have. I have custom musician ear plugs so I can still hear sound but they really help cut the bird noise when outside. I find being outside in nature is the one thing I can tolerate when I can't tolerate much else. (Still can't listen to music or TV or sound machines).


Hang in there

Hi @LindaS, it's nice to know I'm not the only one who can't tolerate the TV or music. It's been quite miserable.

That's wonderful that you've found ways to still enjoy nature. Even being outside has been difficult lately after a bad setback, but I do try to take my dog on walks early in the morning while it is still quiet (although I still need earplugs). Being cooped up in the house all day is very bad for my mental health.

I've tried lots of different earplugs (including custom musician ones), but my ears get very irritated and burn more when I wear them for very long.

I've read many of your posts, and I'm sorry that you've been dealing with this. Do you think you've been making any improvement? I hope so

 

[LindaS]

@Marin

Ditto. I am so sorry that you have to deal with this as well.

Like you, I do find that some days my ears can't tolerate being outside.
I live in the country and you would think it would be quiet, but there are trails beside us and across the street which are used by dirt bikes and ATVs. If I do go outside, it is first thing in the morning before 8:00 am.
Otherwise, I stay in the house.

I just had another setback. A too long conversation with my neighbor and then a conversation with my husband gave me six days of burning pain in my head and ears, and now louder tinnitus. (and there is still lingering pain).
I hope it is just a spike and the volume will go back down.
It's disheartening...the day before my ears felt better than that had since all of this started and I was able to tolerate sound better and then... a setback... again!

What caused your recent setback?

I know you mentioned you are working from home. Is this something permanent for you?

I'd like to keep in touch with you. Hopefully we can share some improvements in the coming months.

 

[Marin]

@LindaS I am so sorry about the setback! It's so cruel when such simple things like a conversation can cause such awful consequences. It's impossible not to develop some level of phonophobia with this condition.

It sounds like your burning pain has at least reduced, so that's good. I hope that you'll be able to continue to improve even quicker this time since your ears had been doing better before the setback.

That's nice that you live in the country, but how frustrating that the tails are noisy! 6 months ago that could have been me riding our ATVs with my family, but now that's all changed

My most recent setback was caused by LLLT (Low Level Laser Therapy). I had read about it helping H on this forum and in some Facebook groups. I was so hopeful about it, but the night after my first treatment I woke up with terrible burning pain on my head and in my ears. That was 2.5 weeks ago and I've made very little if any progress. I'm so depressed about it. I was so desperate to get better, and I didn't think it could get much worse. I was so wrong. Sadly, I hadn't realized that my ears were a little better before the setback, but now that I've lost that progress I realize that I had been a little better.

I was working from home but I'm on medical leave right now. The stress, anxiety, and depression from my ear problems make it impossible to function in my job even working from home.

Yes, keeping in touch would be wonderful. I'd love nothing more than if we could both make progress together

 

[LindaS]

@Marin

Marin, I am so sorry about your setback and hope that it will improve soon!

I will be thinking of you.

 

[Vassili]

@Vassili

How are you doing these days? Is it next month that you see your neurologist?

Hello, Linda!
I am doing OK. Yes, it's November 11th.

And how are you? I hope you are doing better.

 

[GBB]

@LindaS I am so sorry about the setback! It's so cruel when such simple things like a conversation can cause such awful consequences. It's impossible not to develop some level of phonophobia with this condition.

It sounds like your burning pain has at least reduced, so that's good. I hope that you'll be able to continue to improve even quicker this time since your ears had been doing better before the setback.

That's nice that you live in the country, but how frustrating that the tails are noisy! 6 months ago that could have been me riding our ATVs with my family, but now that's all changed

My most recent setback was caused by LLLT (Low Level Laser Therapy). I had read about it helping H on this forum and in some Facebook groups. I was so hopeful about it, but the night after my first treatment I woke up with terrible burning pain on my head and in my ears. That was 2.5 weeks ago and I've made very little if any progress. I'm so depressed about it. I was so desperate to get better, and I didn't think it could get much worse. I was so wrong. Sadly, I hadn't realized that my ears were a little better before the setback, but now that I've lost that progress I realize that I had been a little better.

I was working from home but I'm on medical leave right now. The stress, anxiety, and depression from my ear problems make it impossible to function in my job even working from home.

Yes, keeping in touch would be wonderful. I'd love nothing more than if we could both make progress together

May I ask what LLLT device you are using? I did the same and suffered a tremendous tinnitus spike and additional sound sensitivity.

 

[Marin]

May I ask what LLLT device you are using? I did the same and suffered a tremendous tinnitus spike and additional sound sensitivity.

I'm sorry to hear about your bad experience with LLLT, too. Any improvement?

I actually went to a neuro chiropractor to have it done because I was afraid of doing myself and messing up. I thought that if I had a professional do it I'd be better off. Wrong! It's been over a month now, and my once quiet, calm and stable tinnitus is still much louder, reactive, and more tones. My hyperacusis is still much worse, too. So many regrets!

 

[Croaker]

I'm sorry to hear about your bad experience with LLLT, too. Any improvement?

I actually went to a neuro chiropractor to have it done because I was afraid of doing myself and messing up. I thought that if I had a professional do it I'd be better off. Wrong! It's been over a month now, and my once quiet, calm and stable tinnitus is still much louder, reactive, and more tones. My hyperacusis is still much worse, too. So many regrets!

Chriopractic is a pseudoscientific scam founded by an insane charlatan who claimed he gained his knowledge about the human body from the beyond. No idea how it became so normalized in American society.

 

[GBB]

I'm sorry to hear about your bad experience with LLLT, too. Any improvement?

I actually went to a neuro chiropractor to have it done because I was afraid of doing myself and messing up. I thought that if I had a professional do it I'd be better off. Wrong! It's been over a month now, and my once quiet, calm and stable tinnitus is still much louder, reactive, and more tones. My hyperacusis is still much worse, too. So many regrets!

Hi, I'm sorry to hear - I'm still in the midst of a spike (hopefully temporary). I used a Konftec at 660nm wavelength. Any idea what wavelength was used on you?

 

[weab00]

Chriopractic is a pseudoscientific scam founded by an insane charlatan who claimed he gained his knowledge about the human body from the beyond. No idea how it became so normalized in American society.

Most chiropractors are not voodoo practitioners, but offer a different approach to physical therapy. Just ignore the quacks that say they can cure cancer, but the majority are as level-headed as any profession.

 

[Marin]

Hi, I'm sorry to hear - I'm still in the midst of a spike (hopefully temporary). I used a Konftec at 660nm wavelength. Any idea what wavelength was used on you?

I believe it was around 660nm, and only 10 minutes. I suppose that I'm just very unlucky and over sensitive to treatments.

 

[GBB]

I believe it was around 660nm, and only 10 minutes. I suppose that I'm just very unlucky and over sensitive to treatments.

That's the exact frequency and duration that spiked me. Going on a few days now - tinnitus is louder and wilder and hyperacusis is much more pronounced. Wish I could roll back the clock...

I guess we are both sensitive!