Are There Any Success Stories for Pain Hyperacusis / Noxacusis?

Are you going to continue LLLT?

 

If I do I'm going to switch from an in-ear laser to an outside the ear LED array like this:

https://redlightman.com/product/red-infrared-combo-mini/

Evidently I am very sensitive so I think the Konftec is a no-go. Some people had good results with these light arrays - they are also much cheaper.

 

Doesn't seem like there's much science behind this stuff but you'll try anything at a certain point. Good luck.

 

I mean there are studies that show a proliferation of cells in the cochlea with exposure to red light. Now does that bode well for tinnitus? There isn't a ton of evidence for the second piece, but the red lights are like 150 bucks, so it's not super risky. I'm tryna take a holistic approach and get little chunks of % improvement from multiple sources - to me it is more realistic than a single silver bullet.

 

Oh no! I’m so sorry. I can completely relate to wanting to roll back the clock. If only! I’ve had many missteps on this tinnitus & hyperacusis journey.

I hope that you start feeling better soon.

Since you seem to be investigating alternative treatments, have you ever thought of IV ozone therapy or exosomes? I did one session of HBOT when I first had my SSNHL, and it seemed to help quiet my tinnitus and relieve my then mild hyperacusis until I messed it up with more sound exposure. Sadly, there’s no way I could do HBOT now with my ears in this state, but it makes me wonder about ozone therapy. The ozone place by me also provides exosomes treatment. Since my LLLT fail, I’ve been pretty nervous about trying anything else, though!

 

If you’re brave enough to try another LLLT treatment with the red light, I’d love to hear how it goes. I can’t say I haven’t thought about it, too, but at this point I’m too scared! If I get any worse hyperacusis wise that will be the end of me.

I’m still in disbelief over my severe reaction to LLLT when so many people get improvement.

 

If I do try another form of red light therapy, I'll be sure to update! To be honest I haven't considered ozone or exosomal therapies - this is the first I've heard of either, which is intriguing, though I'll have to educate myself.

I sincerely hope you start to improve and feel better. Will keep you posted on how things go for me.

 

I've had pretty severe hyperacusis/noxacusis several times that improved significantly. Here's a quick summary of my timeline:

2001 - My first tinnitus onset after a noise trauma also brought on hyperacusis. I don't remember exactly how bad it was, but I remember wearing earplugs on the bus to school and that dishes clanking was an absolute no-go. I also don't know how long it took, but after maybe 1-2 months the only thing left that really caused me pain wash dishes. I could still listen to music, even on relatively high volume, go to restaurants (without earplugs) go to concerts (with earplugs) etc, no problem. Tinnitus was a high pitched hiss, but I habituated and lived a 95% normal life for 13 years. The only thing that would spike it was the common cold. Not even moderate noise traumas would affect it.

2013 - Had a bigger noise trauma that caused the tinnitus to become much louder and unstable/flickering. Still only had hissing though, no tones. Hyperacusis went through the roof like never before. At its worst I couldn't go outside without earplugs, writing on a keyboard was painful, etc. I think it took about 5-7 months this time for it to reach a baseline. It again got much better, but the new baseline was def worse than before, and the tinnitus got somewhat reactive for the first time. I couldn't enjoy music like before, and although I kept going to concerts and playing music, with earplugs, it was now always an annoyance while in public places. I started always carrying earplugs and used them in most moderately loud places. I also now started to have "good" and "bad" periods, that would come and go without any specific reason, and that would last 2-3 months usually, where tinnitus and hyperacusis felt more intrusive, although tinnitus volume stayed basically the same.

2017 - Had a new and my first tonal tinnitus come into my left ear (4000 Hz), for no apparent reason, just started one day in bed. Hyperacusis stayed the same.

2018 - A new tone in my right ear after a noise trauma from Snowboarding on a very icy slope. The breaking sound was super loud, and I had forgotten my earplugs in the car. Tried to plug my ears with my fingers whenever I was breaking, but the few times I didn't was enough to create a new chronic 1000 Hz tone in my right ear. Hyperacusis went up for a while, maybe a month, but then down to post-2013 levels.

November 2020 - Had a 92dB trauma (checked my iPhone health log) for ONE second on my headphones. Didn't think much of it but the next morning my left ear had become super reactive to any noise above a low speaking tone. My own voice now makes my hearing distort with shooting pain. Hyperacusis was ok the first two days, but then started increasing. Now, 9 days later it's not better, and both my hiss and my tonal tinnitus is as loud as ever. I fear this might have been the straw to break the camels back.. as I don't see how I'm supposed to be a social being when my own voice, and other's, causes anxiety and pain. It SUCKS.


BUT, I wrote this to first and foremost convey the positive fact that my hyperacusis has subsided significantly from two major onsets before, to the point where it just became part of my daily life and I was more or less fine with it, so it's definitely possible!

 

Thank you for for the positive post and putting recovery into perspective.

twa

 

I believe I'm a success story. I'm 4.5 years in with tinnitus and at one time significant hyperacusis due a bevy of setbacks. At one point in time I was in fear of having to stop cease employment. Typing lightly on a keyboard hurt. Shutting doors lightly caused searing/fire pain. Aircraft flying above my home whilst I was in bed with covers over my head hurt and engaged my TTTS. Not good. A week ago I played my electric guitar between 70-82 dB (seated directly in front of the amp) without hearing protection and 93 dB with 10 dB earplugs in for 10 minutes. At the same time my tinnitus is the lowest it's been for the longest duration since onset. At my worst my tinnitus was a 1o on the rating scales, today I consider it a 1-2... ambient hiss. So insanely grateful. I know this sounds cliche, but if I can recover, anyone can. My situation was noise indued, but I have to add the fact that my overall spine health was terrible due to abuse over the years.

What helped:
1. Never talking an OTC... totally get those who do.
2. Not plugging when possible... learning my boundaries.

When noticeable improvement began:
1. Physical therapy on overall spine... terrible forward head posture.
2. Smoking cigars... I know, but I'm telling you it helped me relax (never smoke prior).
3. Stiff drink upon possible setback (never really consumed prior).
4. Job change... much less stress.
5. Not hibernating after setback. Exposed myself to noise the next day (after 3 years in).
6. "Learning" muscles in head and neck; actively concentrating on relaxing them... very hard to do.

Could it just be time, possibly, I do know the second list above accelerated progress? At present I never plug up unless playing guitar or knowing dB will be about 85. I had terrible setbacks. I found what works for me, thus mileage my vary.

 

How are you doing?

 

@twa Still very much struggling, but thanks for asking. How are you? I hope you’re feeling better!

 

I feel like I'm sort of a Success Story. I had pain from my own voice which made me cry and now for the second time in 3 weeks I've had a week with basically no pain.

I did not take any meds either.

But I'm pretty sure the infection that caused all of this made me lose a bit of hearing.

 

Hi @Philip83, how are you these days? Is your burning pain hyperacusis present?

Cheers!

 

The chronic pain is basically gone, yes! The worsening of the reactivity in my left ear is still there though, and I'm still more noise sensitive on that ear, i.e. if something is really loud it starts to hurt and the pain goes on for a few hours.

But again, the chronic pain/burning (when in quiet) is more or less gone. I'm moving around outside again like normal. Although I do love and cannot live without my AirPods Pro with ANC.

 

Man, I think this is fantastic news, there are not so many people with burning pain hyperacusis that healed!

I read many of your posts but I did not figure how long did you have the burning pain in your ear(s)?

May I ask if it was constant or if it lasted just for a small period of time after you were exposed to noise?

Thanks and congrats again!

 

Off-topic a bit maybe, but I actually just had a moderate noise trauma from a set of speakers a couple of hours ago and now I got some dull pain that I hope won't turn into something worse/chronic...

Anyways, when I had my last chronic worsening after a headphone-noise trauma in November 2020, the worst pain lasted for maybe 3-4 months. Or, it's not like it was always there and then suddenly it went away. It comes and goes, then it "goes" more and more, until it was back at some kind of manageable baseline, although not as good as before the accident, but I'd say maybe 70% where I was before.

There was one event though that made me much better over only a couple of days, around March 2021 I think, which was a trip I did to another city to visit family and friends. All I can assume is that the change of scenery, pace and "daily routines" somehow created some new neurological pathways that made my nerves relax or something. When I did the 5 hour drive to go there, I was uncomfortable with the in-car noise, driving by myself even with my over-ear ANC headphones. When driving back a week later, I had a friend in the passenger seat that I talked to the whole way - no headphones, no earplugs, nothing! It was a crazy change and I couldn't believe it.

I discussed this with my therapist and he wasn't surprised by what had happened. He explained that a lot of "pain management" in healthcare uses more or less the same method to alleviate chronic pain in patients - giving the brain "new"/varied input. The pain is real and physical, no doubt, but how the brain and the mind acknowledges the pain (or doesn't) causes the actual experience in pain level to change.

So, to kind of round up what I'm trying to say, and answer your question; My chronic dull/burning pain lasted about 3-4 months at the worst, initial level. My good days then started to get better and more frequent. I'd say that I was back to my current baseline after maybe 7-8 months, but I didn't do a journal or anything, so it's hard to say exactly though. But what I encourage you to do is to try and change up your everyday life and see if that "tricks" your brain into not thinking so much about the pain, because once you stop thinking about it, it will most likely also start to decrease in actual level over time. Go outside, meet some new people, do some new things - with appropriate ear-protection of course, but also without overdoing it. It's a shitty and annoying balancing act, but what choice do we have?

 

@Philip83 man, your post was so informative, thanks a lot for your detailed explanations. My therapist said also that I have to keep the brain busy, otherwise when I think all the time about hyperacusis, my brain is overexcited and increases all its senses, including the hearing. So it becomes more alert and more sensitive.

I also keep a journal but I did not find any pattern for my pain. Unfortunately all the methods that I use for protection gives me pain (muffs = pressure on trigeminal nerves, any earplugs, even custom = burning canal).

But I totally agree with you, even my pain is almost the same, 2-3 days after my weekly therapy, I always feel better. The pain is there, but my brain can ignore it, dunno how to explain but I am sure that you understand.

Thanks a lot again.

 

I consider myself a success story. I'm mostly pain free after about 9 months. I did nothing at all, no medication, no therapy, just rested my ears the first few weeks when it got really bad.

I was a 6.5-7/10 in the pain scale for 4-5 months until it got better.

I did lose some hearing in the affected ear though.

 

Glad to hear your noxacusis improved so drastically! How long was the period between onset and you reaching the level of improvement in your post?

 

3-4 years.

 

@StubbyJ, congrats for your progress. Did you have pain also in silence, or just when exposed to noise? Because in some cases the pain stays even if the noise is gone.

Thanks.

 

I tried this exact approach after my most recent setback and it just got worse and worse with further exposure. And I mean *rapidly* worse, to the point where a likely two-week setback has turned into a multiple month setback.

Only when I started resting my ears and protecting them did I start to finally recover a little.

I have no clue why this condition is so hard to treat consistently and predictably. I hate it so, so much.

 

Good point. I talk to so many people who got better then got worse for almost no reason. Including myself, I am doing almost the same things every day, still I have good days and horrible days, and I really don't understand what triggers the pain. I keep a diary also but without any help, it's still random.

 

Has anyone had an MRI and how do you protect yourself besides earplugs?

 

When you immediately exposed yourself to noise, what level of pain did you get? Currently, even in musician’s earplugs for 30 minutes, last night where I was exposed to my 3 children talking some, the sound of the furnace, the microwave briefly I went into a pain state that has lasted from 10 pm last night till now. My entire head and face hurt for several hours. Just to clarify, are you saying you pushed through that type of pain? Or was your pain at this point more mild?

 

Do not have an MRI unless it is absolutely necessary. Ask your doctor to be honest about the need for that test.

Most doctors prescribe MRI tests as if they were distributing candy. They SELL those tests, because it is profitable for their businesses (clinics, private hospitals etc).

Many times the patient does not really need an MRI but doctors still prescribe it just to make money.

 

Please note that musician's earplugs does not protect too much. I tried 3 brands and they were like thin air compared to 3M 1100 or other quality earplugs.

 

Yeah I know. I was just see if taking the edge off would help with the pain enough to not be as closed off as higher NRR earplugs. 3M 1100’s are what I normally use. I got a box of 200 pairs.

 

Yes, I have three young children. Two 6-year-old twins and a 9-year-old. The twins make a ton of noise. So difficult to hide away from it all in every circumstance. I feel like I’m constantly telling them to keep it down.

My oldest wants to talk to me a lot and I have to tell him I can’t really converse all the time because my ears seem sensitive to extended conversation.

It’s hard on me and totally not fair to them.