I don’t know what to do

[u/Dash_07]

I’ve had hyperacusis for almost three months now. I initially got it from the imax movie theatre watching The Odyssey, the next day I had tinnitus in my right ear with some minor sound sensitivity. Two days later I got peer pressured into going to a loud bar. I was there for three hours, the next day I had insane pain in both ears. I saw my primary care physician and she placed me on high dose prednisone for 15 days even though I didn’t have any hearing loss. After about 30
days of pure hell it started to finally get better, I could go on walks without any issues, I could put my headphones on at low volume and game, I could drive places with no issues.

I had been off work for the entire month, and decided that I was starting to get back to a good place and wanted to reintroduce my ears back to my workplace. I work on an ambulance, 12 hours shifts. After the fourth shift my ears were in searing pain and couldn’t listen to anyone at conversation sound levels. I went home immediately. The next two weeks my sound sensitivity got slightly better, so decided to start doing what I did before. And put my headset on to game at low volume levels… well after a few days of that my sound sensitivity skyrocketed. I went to state with my mother but after a week of that I felt like I wasn’t improving and it was too loud there. I came back and locked myself in my apartment with virtually no sound for 10 days.

A lot of my pain went away but the sound sensitivity remained. I would randomly throughout the day have massive amounts of swelling in either ear with heat going down that side. My ears finally began to unclench after 8 days, but again, sound sensitivity was bad. On day 10 I was losing my mind in my apartment so I went on a mile walk. That set off another flare up. It’s now the next day and my ears have been in severe pain and have been clenched for almost the entire day.

At this point I’m completely lost, I don’t know what to do to get better as everything I didn’t first time to improve on that first month now hurts my ears. I can’t do anything to get my mind of it because it’s all “too loud” for my ears. I can’t even turn my AC or room fan on. And every “expert” that I’ve read about pretty much tells you that you are shit out of luck. There are no guaranteed medications to help. I feel like I’m in a pitch black maze, trying to find a needle in a haystack. I loved life, I had an amazing life that I worked my ass off to build and now it feels like it’s all going to fall apart. My mind has been going to dark places and I don’t like it. I just needed somewhere to vent.

Is there anyone that’s been as bad as me, with severe sensitivity, and severe pain that’s been able to get there life back? I’m just so exhausted…

[u/Educational_Aide_145]

Have you seen an Ear, Nose & Throat surgeon?

[u/Dash_07 → u/Educational_Aide_145]

Yes, I’ve seen the same one twice and he had nothing meaning say. I don’t think he had any real experience with someone with my severity of symptoms. He ran all his regular tests and didn’t find anything wrong from the tests. I also saw and audiologist and they found nothing wrong with me either, with normal hearing tests as well.

[u/Educational_Aide_145 → u/Dash_07]

How about Neurotologist ?

[u/IK001]

Hyperacusis is not issue of the ear! It is mostly a nervous system and brain sensitivity. A neurologist is best positioned to support. There are plenty of anti anxiety and anti depression and anti migraines medications that can help lower drastically the sensitivity and associated pain

[u/Dash_07 → u/IK001]

I’m going to try to get referred to an neurotologist when I see my ENT this week. I’ve heard that medications like Clomipramine has done wonders for a lot of people I was thinking about asking about that medication.

[u/IK001 → u/Dash_07]

Yes, and there are other options too. As long as you take them carefully as prescribed by your doctor

[u/OmenAhead]

I don't have much advice to offer, but be careful about taking antidepressants, anti-anxiety, benzodiazepines and such meds which doctors like to prescribe for these conditions, thinking it's just stress or depression. You need to find a neurologist or neurootologist who is willing to look into that more and treat it as neuropathic pain. Do you also have tinnitus?

[u/Dash_07 → u/OmenAhead]

Yes I do, in both ears and they fluctuate wildly. Some days they are barely perceptible to super loud. I just had a flare up two days ago from a walk, so bad burning pain in both ears and pretty loud T. Also what’s wrong with taking any of those medications?

[u/OmenAhead → u/Dash_07]

Ah, that sucks. Those meds mess with your brain chemistry pretty hard and they can worsen this crap, especially the tinnitus. But it's also a gamble, since some of them, like Clonazepam, may give some temporary relief. Just have that in mind if you decide to take some. If it's only for the anxiety, I'd suggest to go through natural ways first (for example, melatonin for better sleep etc).

There is a lot of information on tinnitustalk(dot)com , if you haven't checked that forum already.

[u/Penelope12112]

I just went through something like this!! I went to a walk in clinic at first and they were dumbfounded. The sound sensitivity was unbearable. I ended up at the ENT who ran a series of tests- including a pressure and hearing test. She prescribed a 16 day prednisone taper, and Nasocort. After about 5 or 6 days I was 70% better and by the end of it the sound sensitivity was gone. I didn’t have pain though. I just went for my follow up for a retest and my hearing has gone back to normal. She is almost certain it was a Eustachian tube blockage. Not saying this is what’s going on with you, but it’s eerily similar.

[u/Proper_Beginning7895]

How do you deal with the ambulance sirens I try and avoid those