This is my update too by the way:
Yeah I just read it, I have read probably over 100 stories like that. Gives a lot of people hope. It really depends on how long the person has hyperacusis and what the damage is from, and where in their ear. Hyperacusis can be caused by so many different things. Honestly it's sad but a lot of people with loudness hyperacusis will act like that. Same story as what I read about that guy who was in his house for 6 years. There are many many forms of hyperacusis. In my opinion sound therapy can be helpful to those who don't horribly worsen from noise. My loudness hyperacusis in August was severe. Every noise sounded like an explosion. Touching a piece of paper felt 100 decibels.
At the time if I talked I would get actually aching pain or if I was pushing through my hyperacusis too much. And I got severe stabbing pain from high pitch noises like car breaks and metal squeals. I thought I was bad, then sheesh, was I wrong. Earplugs worked then. I could make short trips to the grocery store, eat dinner at my parents, go for walks, shower with earplugs in. I was in pain but it was more like temporary pain as long as I was careful. After reading all the crap from Jastreboff, all the articles and hundreds of claims of people recovering from hyperacusis, mostly loudness and some from pain hyperacusis, I made a online appointment with Ben Thompson. Really nice and helpful guy. I explained my situation and he was confident my personalized sound therapy would help but he was weary of the pain hyperacusis.
He told me loudness hyperacusis can definitely improve and the pain hyperacusis could too but I need to be careful with it. I sat in my living room, put a fan and an air purifier next to me and played video games 12 hours a day. At the time I was decently comfortable in my house from outside noise unless it was an airplane or really loud car.
Within 6 weeks I could sit in the shower (75 dB) for an hour with no earplugs and not be bothered at all. I could talk for a short time with no issues. The buttons on my Xbox controller stopped hurting. There was a period of two weeks I actually saw hope. But then one day I was in bed listening to my fan and the air purifier's noise started to make my ears ache. I thought nothing of it and went to bed. I woke up and I was fine. But I had more and more discomfort of my sound therapy over the next 2 weeks. I started getting aching pains in silence, and it kept getting more painful. I kept telling myself don't give up, push through it.
One day I wake up and my nose was leaking like crazy, honestly I don't know if it was just allergies or CSF fluid. It was a lot. It kept pouring out. My ears felt better after my nose drained. Then the pain aching I kept getting was happening more frequently and getting more severe. One day I sneezed 20 times. I took a shower thinking it was ok, one loud puddle of water hit the floor and I felt the same snap I heard in May when my ear starting getting bad.
Soon enough my pain got so severe I started throwing up, walking hours barefoot until my feet bled. My loudness hyperacusis was still temporary gone, but my pain tolerance kept dropping. Soon it started hurting to chew any food, to shower even with earplugs in. I had to stop leaving the house completely. I had a few setbacks that left me in so much pain I would wake up in the night having light seizures from the pain and losing control of my body, I would get up and run for hours until my feet bled again.
December 2021 was the lowest level I have ever been had, I truly almost killed myself. But I'm not going to give up so soon. At this point I was getting severe pain from every single noise. I lost all hope. I started an extreme low histamine diet and I started seeing baby progress.
On good days I can now shower with earplugs in, watch comedy shows on low volume, and talk to friends with earplugs in for a short time. I still get horrible pain but it's a little less and does not last as long. Still completely debilitated. I also was suspected of a perilymph fistula in my lower pain ear and somehow made a two hour drive to get a blood patch. The drive I thought was going to kill me literally. Surprisingly the worst pain I got was from some ass with his flip phone on full volume in the waiting room. I made the drive back and my ears felt a little better sensitivity wise.
Tinnitus definitely spiked though. My injection ear was sore and hurting from the injection. It's recovering more and more every day. A few days ago I made a risky decision to test my ears since the blood patch and a month of the low histamine diet. I left the house with no hearing protection on, only earmuffs on my neck just in case. It was 2 am though, I'm not ready for daytime stuff. Normally sprinklers, the pool units, and ac units from houses would trigger the pain. Everything seemed less amplified, and I made a hour long walk and made it back with no pain.
Past few days I was getting better seeing improvement, then one day I cooked my chicken wrong and it turned out all chewy. All the chewing and noise I made eating it started up the middle ear pain again, then made it's way to my inner ear. I'm in pain as we speak and I am very upset, but I hope it will go away with a few good nights of rest. I definitely have some middle ear pain, along with neck and maybe some TMJ triggering the pain who knows. I also talked for over 3 hours to a buddy on Xbox. I still can't stand artificial audio really I had it on subtitles. But talking that long was a win. Now it hurts again to talk. I hope with time it will ease up again. I am getting weary of how careful I have to be it's exhausting and tiring. One wrong sneeze or crunch chewing and I have to start all over.
It's insane how bad and painful this can get. Truly, there is probably not too many people on Tinnitus Talk who had or has this condition to the severity as me. I know a few who are worse than me actually. There were definitely quite a few people who had it worse than me and improved with time. I am definitely not the worst, but I am up there. Only these people with true pain hyperacusis will understand the horror and despair of this condition. The people who have it the worst have severe pain even in silence, pain triggered from every noise, tinnitus spiking to everything. Every time they feel pain their tolerance drops, and the threshold for pain is lowered.
My LDLs were truly at 0 for a few months and man was it an absolute nightmare. So terrifying and painful. I am thankful how I can recover fast on this diet but my setbacks happen extremely easily. I am thankful my tinnitus is not catastrophic because that would be the end of me. I am still in a lot of pain, but I have some sound tolerance.
My point about the sound therapy is that unfortunately it does not usually work for true pain hyperacusis people. It can work for people who feel pain temporarily and their loudness hyperacusis is severe. But people who have long lasting severe pain that worsens with noise I think sound therapy is not a good idea. Sleeping, eating right, silence, taking the right supplements is key to recovery.
I really don't like those articles talking about severe people getting treated with TRT. They make it seem like the patient was exaggerating and that sound therapy works for everybody. It truly does not, especially for pain hyperacusis. It is much worse than they realize and there are many co-factors people need to discover and treat, to give their ears a chance. I wish it was as easy as wearing generators and slowly upping the volume every couple of weeks. Those audiologist don't realize you can't make somebody with a broken leg walk. You just allow healing. Then slowly ease your way back in. Pain hyperacusis can be 10x worse than any leg injury. I read some stories of people with pain hyperacusis giving themselves years of silence, then slowly doing their personal sound therapy.
Who knows, everybody is different with this crap. I hope I improve much more in the next couple of months, I am excited for 5 drug trial results coming out this year. It's a big year for all of us. If they all fail I will be going to Silverstein and getting surgery on both ears and possibly having him disconnect my middle ear bones and cut my tensor tympani. I'm not living with it this bad forever. I can live a quiet life but not having to worry about chewing and only leaving the house at 2 am. This December I will know if any drugs have a possibility of getting to market, if I don't think any have a chance I will decide if my hyperacusis is the stubborn type that does not get better after two years.