My doctor explained that the hyperacusis is due to brainstem compression , an organic cause, from craniocervical instability so it's not a matter of being accustomed to no sounds, sound or noise is not therapeutic , I cant "work up to" being able to listen to more sound. Bc of it essentially being due to an organic brain injury that is ongoing and hasn't been fixed , like a brainstem tbi.
The only things that have helped with it are meds that lower glutamate. Brainstem glutamate increased in cases like mine, due to injury, and brainstem glutamate causes sound sensitivity. So I assume that's why any gabaergic or nmda antagonist or even opioid (since opioids have downstream effect on glutamate ) helps with the sound sensitivty. Or why traction (where the head is temporarily pulled away from the body , or upward if you're upright) helps. But I have not been able to increase the amount I can tolerate without medication and in fact that causes pretty bad crashes. Maybe it is different etiology than the type you are talking about ?
As for the first question its complicated and hard to describe, but depending on the severity on. a given day and if I overdo things, it can be mild or severe, and I think it's all sounds but definitely volume matters and maybe bass is worse , I'm not sure. It's hard to describe and I cant go into detail right now. But it goes along with vertigo and pain at the back of my head, apparently these are part of "cervicomedullary syndrome"
O, sorry - I assumed a psychosomatic response, since that's where most hyperacusis cases come from. Still will have to hear some painful sounds now and again, though, I'm afraid. Don't want to develop reflex seizures.
Yeah, if there's brainstem compression, you can't do much to treat the pain, should still have an effect to desensitize your brain though - even if it's just a little less pain. That's for your doctors to decide, since I lack data. I hope they've checked you for a tumor? That's a big warning sign.
This is a hard thing to say, but you might have to overthink the possibility of opioids. I thought at least the hyperacusis would be treatable. I mean with your EDS, this is not going to be the last time you're going to be in fucking pain, there will be more and more things piling onto this. Here, in Germany, it's very common to treat EDS with opioids, because your brain knows them, and it's easy for your body to process them. I know the thought is scary as fuck, but just look at
@MsDiz , she seems to be functioning better than most people in general. I think as long as you approach it with the mindset of "you're not doing this to have fun" and "it's about getting your life back", you can keep yourself from spiraling into addiction and ridiculously high tolerance.
Maybe get a third opinion from a doctor who is not strictly against opioids, and talk it through with them. Your doctor may be very good, but they are not being impartial here. It's important to view the puzzle from above, can't have personal feelings in the way.
To give a little bit of my own opinion here: I suffer from chronic pain myself, that is chronic sinew pain in my hands and legs, and my decision was to stick with the pain. I could have gotten medication, and I decided against it. (and yeah, the pain is intense, when I feel it)
So I'm really just trying to objectively think through your situation, I really don't want to push you in either direction, and I personally do not feel my pain anymore, unless I think about it like right now and typing starts to fucking hurt.
