Hyperacusis/Noxacusis: Various Types of Pain and Their Associations

Thx and sadly I know too much. But because of my knowledge I will use it to recover. I’m not living the rest of my life like this.

 

Yep, for me also. I have constant pain, but silverware and paper are the worst.

 

Are those sounds too loud or do they only give you pain when hearing them?

 

I think the passage of time plus some of the new medical treatments/technology should be of benefit to you.

 

Ugh the only way the passage of time will help is if I lock myself in my bathroom for 2 years maybe. No way to avoid noise. I hope these new meds help.

 

I thought that you previously referenced that you are only aware of a few people who did not eventually improve and were unable to tolerate any noise, that most people calm down a bit, etc.

It seems implicit that this means that over time, the vast majority of folks improve to some degree.

 

Yeah I did say that. That is the case for most people. Most do improve with time and silence. I don’t improve. It’s been a year and my tolerances just never go back up. I’ve heard of only a few cases of people getting the pain like me. Or getting so much worse from noise that’s not loud. My case is different from most others. I’m pretty sure I’m in the few percentage that doesn’t recover. A year is still early for hyperacusis. I’m still early in but it’s not a good sign I got so much worse and not any better.

 

When you say most improve with time and silence, are these folks who expose themselves to virtually no sounds (silence) or do you mean folks who sensibly protect and perhaps do some form of sound therapy?

 

Both. I’ve seen people do both and recover. The most severe cases I’m pretty sure just sit in a sound proof room and don’t move all day. I mean that’s just so hard to even accomplish. Complete silence is so difficult but it has worked for some people. I would if I had millions of dollars and could buy a house up north with a basement.

 

The conventional wisdom seems to be that to be in complete silence is counterproductive and that your auditory system needs some sound as a type of nourishment. I believe that I directed you to that case study where Norma Mraz was the coauthor. The person described in that article went to extraordinary lengths to avoid sound and they had him fitted with above the ear sound generators and encouraged him to reconnect with the world.

I do not have an opinion on the subject, but I have tried sound generators for over six months and it has not resulted in any improvement (or none that I can discern). I know that progress with these conditions does not necessarily proceed in a linear fashion. I have been advised to be patient.

 

Yeah I wish that the no silence thing worked for pain hyperacusis. It’s a different condition entirely I’ve learned. If I didn’t do stupid sound therapy I would be much better. It definitely helped my loudness hyperacusis. Anybody who says you need more noise for pain is a fool.

 

What type of sound therapy did you use? How long were you better before the pain hyperacusis started?

 

Both. I have loudness and pain hyperacusis.

 

How are you treating those conditions?

 

Just stuck my fan and my air purifier next to me 24/7. Slept with them too. I would say I was feeling good for a month, then my bad ear started aching and I was dumb for pushing through it.

 

The conventional wisdom, as you say, has an approach similar to that of Allodynia. However, in therapy for Allodynia, the patient chooses things to touch themselves with that are comfortable for them.

In TRT and lots of sound therapies that isn’t really the case. They choose white or pink noise for you or some other prepackaged sound profile pretty much. So the sound profile has no guarantee of being one that accommodates your needs if we keep with the analogy of Allodynia. So it could be hitting your ear in such a way that causes irritation.

 

Yes, I agree. I have mine turned down to a very low volume but given that the sound is so close to the auditory system (using above the ear sound generators), I wonder if even 5 to 10 dB of sound is aggravating.

 

There is no treatment for pain hyperacusis. i am almost homebound and avoid loud noises.

 

You found my question funny when I asked whether 5 to 10 dB through above the ear sound generators could cause an aggravation when the sound is so close to your auditory system. A whisper is apparently 20 dB.

I assume that you believe that such a low level of sound could not cause any aggravation despite how it is administered (either through above the ear sound generators or through normal, everyday sound).

Apparently, there are a percentage of people who are not able to tolerate sound therapy through above the ear sound generators.

 

I wasn’t aware that I left a reaction to your post. I must have unknowingly clicked the funny reaction by mistake while reading through this thread. My apologies and thank you for letting me know as I never intended on it (removed it). I’m not the type to dismiss one’s experience with tinnitus, hyperacusis, & noxacusis. It’s all very individual.

 

I think this happens a lot more than people realize with reactions. The scroll thumb is basically right in line with the funny reaction.

 

It did not upset me. I just thought that my statement may have lacked validity in the opinion of some people.

 

I have pain in my left ear. When I first got tinnitus, the pain was so insane I could not talk as my own voice caused me too much pain. This went on for a very long time. I understand why some people who experience this commit suicide. The pain eventually went away. Since then I have had so many episodes where the pain comes back due to some noise exposure. At times the pain lasts from a few days to many months. All I can do is wear earplugs and wait for it to go away again. Currently I have not been pain free for months. I hate it, it robs one of having a normal life, limits work and good relationships. You always need to explain it to people and they just cannot seem to grasp the seriousness of it. Music was a big part of my life, now it causes me pain. People talking to you for too long causes you pain.

There was a time when I did not seem to get pain anymore, I was on Magnesium supplements for a long time, my ears seemed to have built up some resistance back then to sound that would trigger the pain, but I have had no success again being on Magnesium this time around.

 

Exact same situation here. Former very serious musician. I just had a setback that undid my previous 2 years of healing. At this point I'm just ready to give up. It's too much.

 

What caused your setback? If you load up on Magnesium & Potassium and protect 24/7, it will also get better this time, maybe it will take a little longer. It is shitty that we have to live like a recluse for a few years, but better to do this to have some quality of life in the future. After two years spending mostly in my apartment I just recently started mountain biking again with foam earplugs. So I am getting slowly some quality of life back. But I am still protecting 24/7 as I have the feeling my ears are nowhere near having the strength they once had.

 

It was the stupidest, most banal thing I can imagine. Long story short, I was cleaning my Britta filter and its handle broke and it made the most absurdly loud sound ever. It's like an inch thick piece of plastic so it makes sense that it'd be so loud, but I didn't expect it, and my right ear was like an inch away. Absolutely brutal.

 

Ok, that's not nice. But it probably hasn't set you back two years. Just remember that we always need to wear hearing protection as those random events can occur anytime. If I know I have to talk to someone or if I am in the office, I am always wearing those musician (or Christmas tree) earplugs.

 

Hello sir, I would like to ask you a question since you are so knowledgeable if you don't mind.

What is your opinion on stem cells as treatment for tinnitus/hyperacusis and have you thought about getting the treatment/gotten it?

Thanks.

 

Hey, well, I think stem cells do have the possibility to treat hearing disorders. The issue is the kind of stem cells, and if it gets into the round window. I’ve read some articles about it healing synapses and hair cells but they weren’t specific on the type of stem cells. I’m probably going to end up trying all kinds, also PRP. I think it’s something worth trying if one has the money to do so. I wouldn’t put all my hopes in it though. It can work for some people but it’s a lower chance. Not a miracle but it’s worth a try if all other options are exhausted.

 

This is exactly what I'm feeling right now! Nerve pain from my ear to my neck. The sensitivity gets worse when it starts. I can't talk. Even whispers irritate it. And I think I have patulous Eustachian tube dysfunction with all the clicking and popping that you also described. My tinnitus is so loud; it's all I hear.