Severe Noxacusis (Pain Hyperacusis) — Feels Like My Life Is Over

As someone who has had other pain conditions, I wanted to point out that listening to your body is not always the way to go. Sometimes, you have to get your body listen to you.

In 2019, I had a terrible bout of kidney stones that required surgery. It was so painful I passed out. Following that, I had constant pelvic pain, which is another syndrome that's not well understood. For sure, I thought the doctors just don't understand me and that something terrible must be happening with my body.

Then, during the pandemic, I had a terrible panic attack when I thought mother had COVID-19. I received treatment for the panic attack, which unexpectedly also temporarily resolved the pelvic pain. Which made me understand that my pain was not related to anything organic.

Back to the ears, I also get tinnitus, fullness, delayed pain as well and many sounds will just ruin my day, or more like 10 days. Opening a soda can? Slamming a door? Dropping silverware? All drive me crazy. I couldn't go to the barber, a restaurant, even the mall.

But here is the thing. Just because a sound hurts does not mean it's harmful. If you have bearing loss and suffered some traumatic injury, then yes, you do need silence to allow your ear to heal. But if your hearing is normal, then it's likely your brain is actually misreading signals coming from your ear. The more you listen to it, the worse it gets. I'd listen to the ENT and try CBT. Learning how to control your body rather than letting your body control you has helped me a great deal. It's not perfect by any means, but it's a lot better than removing yourself from life. Now, when my ear acts up, I have an internal monologue, telling myself "not now, not doing this" and so on. It doesn't always work, but it helps. Also, finding really pleasing, soft music and listening to it has helped. Now I can go to the movies again, quiet restaurants, and the barber with earplugs.

That being said, harmful sounds over 85 dB you should try to avoid. No headphones and definitely no micro suction. Ear syringing is also terrible. An occasional door slam or plate drop is unavoidable though. I'd recommend getting earmuffs and avoid ear plugs which tend to push wax in. Wax removal is associated with all sorts of problems, including tinnitus.

Hope you feel better! Don't give up, the condition is manageable. It just requires a more comprehensive approach than just avoidance.

 

I agree with some of what you said. Unfortunately, the condition is not manageable for all of us and it can get really damn bad. I’ve had this ear stuff almost a decade and not once did I have any good outcome not listening to my body. I was kinda where you’re at now 8 years ago, and what you mentioned did work for me. Now that it’s really bad, the only way to get the severe ear pain down is by being in silence.

For most people, you’re right about controlling the body, but in some specific cases, like mine, you can’t. It’s just too painful. I’ve had some pretty painful experiences, but nothing has some close to this. You seem to have the right idea and know loud sound can definitely mess you up. Just be careful man, if you’re getting delayed and lingering pain, it can get horribly nasty. I tried a round of sound therapy and ended up so bad that my pain became permanent. It never stops, it hasn’t stopped for over 16 months.

 

I appreciate your reply. Congratulations on finding a way to live with this horrible condition.

The thing is, in the beginning with this condition, I had this approach. I told myself that noise is not harmful and what you can read on the internet about hyperacusis is that you should expose yourself to noise in order not to get worse. However, this approach made my condition worse, hence I now try to avoid as much noise as possible in the hope of giving my ears a chance to heal. Whether that's right or wrong, I don't know. But that's what feels best to me right now.

Btw, I also had kidney stones. By far the worst pain I have experienced in my life.

I hope your condition improves!

 

I’ve had pretty severe noxacusis. Not to Brian’s level, but bad enough that I basically had lava in my ears 24/7 for several months. I’m not sure I’d agree that CBT doesn’t help someone with noxacusis. I think it’s helping me a lot. That said, time and protection from setbacks have helped more than anything else.

If your ears are on fire 24/7, protect them aggressively. Anyone telling you not to is clueless.

 

Thank you! I hope yours gets better, too! There are definitely setbacks. I am going through one myself right now. Had a terrible week with something super loud happening every day. Knocked over a metal stand, slammed a door, dropped a kitchen drawer front, someone's car backfired close to me, kid in a shopping card next to me started screaming... Then I went to the beach to have a relaxing walk and listen to the ocean, when I stepped on a balloon! Sometimes you just can't win! Tonight I was feeling better when my other half dropped a fork during dinner and it brought the tinnitus back... It sounds like high frequency static.

I think the right approach might be somewhere in the middle. I am noticing a "recovery" period after each incident. I really don't think anything is healing as nothing is broken, but the brain seems to take a while to reset. If another event happens during that time, it does tend to get worse and the threshold gets lower. So I get it why some people say you need to avoid noise. I wouldn't avoid all noise, but now I wear earmuffs to pop a soda can.

At the same time I am fighting this anxiety that's aggravating it. I do have a prescription for Klonopin that I rarely use but it helps stop the obsessive thought process where you keep focusing on your ear, making it gradually worse. I can actually make my ear hurt just by thinking about it hard enough! So, the key is relaxation. Ideally, without stepping on errant balloons. I'll go listen to some soft music and do some retail therapy. It's going to get better!

 

Glad to hear that CBT is helping you. That gives me some hope.

Could you please elaborate on how you think CBT has helped you? Less anxiety? Easier to handle the pain? Or has the pain even gotten better as a result of CBT? I'm curious.

 

The pain has gotten much better but not necessarily as a result of CBT alone. I have just protected and avoided major setbacks for about a year and a half and that’s what has likely given me the most recovery. But I’ve noticed that, since introducing “CBT” and visualizing the process of hearing loud sound in a positive way, I have continued to improve.

I went to my first local show last Saturday since 2019. I wore heavy foam earplugs and listened to loud music for about 3-4 hours. It was a very emotional experience for me because I got to see so many friends I haven’t seen in years. My entire life fell apart when my hyperacusis got bad. No one understands what I’ve been thru, people think I just fell off the face of the earth or got busy with my career or something.

But I was able to listen to my friend’s band and have an amazing time. And as of today I feel really good. I rested my ears completely Sunday and Monday. This was crucial. I also visualized how fun the show was and I visualized rocking out to the music. Yesterday I started introducing sound again with no pain. Today I feel normal. So this is a huge step forward for me. That show was objectively loud, it was something I’d never recommend anyone doing on this website.

Now if this was back when I first got hyperacusis bad, I would think “hey I’m better, I’m gonna go to shows this week too. I’m gonna start getting my life back together.” And that’s exactly what has kept me from recovering. Just getting way too aggressive with trying to push the envelope and ultimately getting major setbacks from cumulative smaller setbacks.

So instead I’m not going to see live music again for an entire month, maybe two. Just to make sure I genuinely recover from any potential damage. Meanwhile I’ll listen to low volume music at home and keep visualizing.

I don’t care if it takes 2 more years to recover, I refuse to go back to being locked in a room with double protection playing video games on mute for 8 hours a day. That’s not a life to me.

But I hope people read this and realize you can recover from serious noxacusis where you are burning 24/7 for many months and every sound is like a nail into your eardrum. You can recover well enough to literally go see live music for hours in small rock venues, something I honestly never thought I’d ever be able to do again!

 

So glad to hear about your great improvement with this condition. Sounds almost too good to be true.

Thanks for sharing your success!

 

Hey! I am so sorry you've been dealing with all this. None of us should be. I have TTTS and hyperacusis too from a very loud gunshot (157 dB) and I think the random twitches of ear pain I get are associated with TTM spasms and over contractions.

You can check out this article on TTTS that might give you some insight into the mechanisms behind the TTTS.

How are you doing these days? Have you tried staying in silence, waiting for the pain to subside, and then start very slowly introducing sound again? This seems to be the best approach if you have lingering/lasting pain.

Just remember that a lot of people do improve and recover from hyperacusis. Ears are just very delicate when you've had multiple acoustic traumas, they take a long time to heal

 

Hi,

Thanks for checking in. So sorry to hear you also suffer from TTTS and hyperacusis. 157 dB sounds incredibly loud.

Unfortunately, my condition has not improved. I live quietly and wear earmuffs most of my waking hours. but I also don't live alone, so it's not possible to avoid all noise. I haven't measured, but an estimated 80-85 dB sound with earmuffs on can make my condition worse for days and sometimes more than a week, so it's hard to see how I'll ever get better, but I guess I have a little hope it can get better.

I hope your condition improves!

 

I'm sorry you're having such a tough time.

This is likely contributing to your problem.

 

Probably. I don't know how to avoid it.

 

How do you brush your teeth with noxacusis? Do you do it with earmuffs? What's your whole brushing teeth routine?

 

I have to make sure I’m in a quiet room and no noise in the house at all, take my hearing protection off, use a manual toothbrush and brush as long as I can. Twice a day I floss at night before bed. Once a week I use a plaque scraper and gently pick off any hardening tarter. So far so good. On bad days the brushing hurts, on good days it’s not as bad, but luckily it’s not one of my bad triggering frequencies. My middle ear pain seems to get more triggered from it than my bad inner ear pain.

 

Hi @Brian Newman. I'm sorry you have to go through this.

I don't have noxacusis but I think I'm on the path to it.

Do you experience tingling sensations on your skull or face, and have burning ears almost constantly?

My tinnitus and hyperacusis have worsened a few months ago and my tinnitus is more reactive to everyday sounds. My own voice was too much already for some years, but now just people talking in the same room seems to be too much.

It seems like my conditioning is worsening exponentially, like a large saw pattern starting and going exponentially higher after a few years, and the teeth of the saw pattern always getting smaller.

I experience a lot of headaches. Gabapentin may bring just a little relief, not much though.

It's a constant torture. I live like a hermit.

 

Burning in the ear is a symptom of noxacusis.

 

Hey @SmallRonnie, if you see this, would you mind sharing how you coped day to day when wearing earmuffs all the time? Were you going out and about, working etc?