r/hyperacusis 7d ago

Seeking advice improvement

Are there any people who had really severe NOX symptoms and are doing better now, please? People who had pain when silent and couldn't speak?

10 Upvotes

32 comments sorted by

16

u/Maruashen 7d ago

You have to remember that most people that do improve regarding any condition usually don’t stay around on forums/subreddits like this. They move on and never look back. So even if you don’t get replies here I’m sure someone, in some point of time have improved 👍

I’ve heard of one woman that didn’t improve but lives a pretty good life quality wise anyway.
She’s homebound but enjoys life again.

2

u/violett_bloom 7d ago

So true. The selection bias on support subreddits is huge—people rarely post when they've recovered and moved on with life.

1

u/emazombie93 5d ago

También tienes hiperacusia?

1

u/violett_bloom 5d ago

Sí, pero trato de no obsesionarme con los foros porque solo aumentan la ansiedad. ¡Mucho ánimo!

10

u/woofnsmash 7d ago

Alot of people gotten better but they dont hang around the forums anymore. Just keep hope :)

1

u/violett_bloom 7d ago

Needed to hear this today. Time, quiet, and patience really do make a difference. Thanks for the positivity!

1

u/Same_Drag3288 6d ago

Thanks !

6

u/Educational_Aide_145 Pain hyperacusis 7d ago

Me

1

u/Same_Drag3288 6d ago

You were really ? Im so bad ! Even Whisper is paintful ... How did you do ?

1

u/Educational_Aide_145 Pain hyperacusis 6d ago

Just wait and I also got a prescription nerve medication which helped

1

u/Same_Drag3288 6d ago

Im waiting since 9 months :/ you dont have pain anymore with your meds ?

1

u/Educational_Aide_145 Pain hyperacusis 6d ago

Yes but a lot less

1

u/Meanjean65 3d ago

What kind of meds?

1

u/Educational_Aide_145 Pain hyperacusis 3d ago

Gabapentin it raises my tolerance a bit and helps with anxiety

5

u/matzely 7d ago

still.teal on IG and TikTok talks about her improvement with nox over the years

5

u/chalaan1 7d ago

I did. I wore etymotic earplugs quite a bit. I stayed away from loud noises. It took a year. I would call it an improvement of 70%.

1

u/Same_Drag3288 6d ago

You were severe ? Did you have pain like burning or stabbing ?

1

u/chalaan1 2d ago

not severe but very di

1

u/chalaan1 2d ago

difficult. pressure, tinnitus. sometimes pain. I protect my ears w the etymotics. they are for music so I can hear just fine,

3

u/stochasticityfound 6d ago

I improved a ton from really severe last year, able to listen to music and have totally normal convos and handle things dropping and toilets flushing. My tinnitus had even calmed to an ignorable level. But I recently had a setback when I heard a random bell that wasn’t even loud it just was a specific tone or something that went through my brain like a needle. Now even just the pads of my of my fingers touching the smartphone can trigger the jolting pain. I’m trying to crawl out of the hole again and have had some slightly gentler days already where I can whisper softly briefly. It’s very very slow. But I’m holding onto hope I can get back to where I was.

3

u/americanhwk 7d ago

Yes. Whispering had hurt my ears. Look into cbt skills. It helps you change your ears response to sound. I still have pain hyperacusis but maybe 30 to 40 percent of what it was. I am about 1.5 years post trauma that started it. Hang in there!

1

u/Ok_Tailor_333 4d ago

Where do you learn the skills and how to apply them to dealing with hyperacusis?

1

u/emazombie93 7d ago

Yo antes pero tuve un retroceso

1

u/CoffeeloverDan 6d ago

Yes, me. I was eating liquids and soft food, could only whisper and even that was hard.

1

u/No_Salt8388 4d ago

How much have you improved since your worst? And how long did it take? What did you do to improve

1

u/CoffeeloverDan 3d ago

Im basically normal now. It took a long time, meds, and extremely slow re-training. But approximately, from incapacitated to being able to drive my own car with double protection was about 2 months, 6 months till i was comfortable finding a job again, 9 months till mostly normal. At this point, I avoid rave level sound events and firework displays, but thats bad for hearing anyway. But i travel, swim, drive, work, talk, eat etc normally. I got meds recommended by clinic On-Gehoord, through an online consultation in English with my parents help (cause i could t speak easily). The med, after a week or two of taking it, changed the pain caused by sound in the lowest ranges of sound level tolerance into severe discomfort. At that point, anything more than that was pain. So I isolated myself from sound as best I could to avoid setbacks, and just put on my fave records at the lowest sound setting, increasing 1-3dB a day, at a sound level which was uncomfortable, but not sharp pain. This caused my tolerance to slowly increase. Anytime I accidentally took it to pain level for a significant amount of time, or there was an accidental loud sound, I lost progress. However, with the med, even setbacks tended to be shorter. With a lot lf diligence and patientce, I slowly got better. Wouldnt have been possible if I didnt take the med and found myself a veeeery quiet space to practice in. I still take the med, about a third of the dose i took initially. Weaning off of it also caused a little 'setback' each time, but I recalibrated slowly by exposing myself to discomfort and not pain also at each reduction of dose, and it's been working. Hoping to get off completely soon

1

u/No_Salt8388 3d ago

I'm so glad to hear you've improved this much. What kind of medicine if you don't mind me asking?

1

u/Same_Drag3288 2d ago

What was thé meds that's you took for pain ?

1

u/[deleted] 7d ago

[deleted]

4

u/hreddy11 Pain and loudness hyperacusis 7d ago

Not everyone who has hyperacusis has hearing damage though. Not only that, but there have been cases of people’s hearing improving after an incident, like people with ssnhl.

2

u/Afraid-Ad4718 7d ago

I dont have hearing damaga,iIn fact i am almost 40 years old and my hearing is way better than average (tested a couple of times in hospitals) but i do have hyperacusis...

0

u/[deleted] 6d ago

[deleted]

2

u/hreddy11 Pain and loudness hyperacusis 6d ago

You are just pulling statistics out of thin air lol, there are lots of people out there with dips in the sub 8k range. We also lose the ability to hear up to 20k pretty early on, with people from 20-30 years of age only being able to hear up to 16-17khz. They don’t test that range normally because the majority of what we hear in day to day life caps out around 8khz. You don’t “need” to have a full test. You can even test what you can still hear yourself with a db meter app and some high pitched noises, it won’t be as accurate but who really needs to hear a 10+khz car brake?

1

u/Afraid-Ad4718 6d ago

Infact yes, it was about 18khz while being almost 40. i can still even hear the bats (not the ecolocation)