Hyperacusis causes and treatments

gbells

Improved ME from 2 to 6
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I am actually going through the process of seeing if our homeowners insurance will cover mold remediation. It does seem that getting fresh air lessen stress my light and noise sensitivity a lot. Still I consider that this could be downstream to cci as I didn’t always have this problem despite being in the same house for years , and it seems that cci could cause mcas issues. Yes benzos really help w hyperacusis but I am tentative about taking them too often and losing the effect
Mold is extremely toxic. I once had some books that were being stored in a plastic bag that leaked water and became moldy. Despite killing the mold with hydrogen peroxide the toxins persisted and had to be removed which I did using a vacuum cleaner and a soft bristle brush attachment.

Given that sensory overload is common in ME patients I suspect that your husband's ME was hypersensitive to the mold toxins. This isn't to say the mold caused the ME however.
 

Dufresne

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I haven't read through the thread, but I thought I'd mention I also have misophonia and occasional hyperacusis. The latter is caused by cellular Lyme die off in my brain. The fix for me is singing. Clears it right up.
 

Dufresne

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Do you have any idea why singing helps?
My guess would be something to do with the vagus nerve. I've heard of people with tinnitus trying various sorts of things. Researchers like Steven Porges, and others, mention singing, gargling, wind instruments, etc as ways of toning the vagus nerve.
 
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so after my first big balloonful of xenon, i can report the following: similar to ketamine in that it helped sound sensitivity and pain but less side effects. i think ketamine has moderate sympathomimetic effects or at the very least doesnt help with the hyperadrenergic state i get in from mcas, etc. It can make it a little bit worse. it def. helps pain tho.

but xenon does the exact same beneficial things but absolutely obliterates anxiety/adrenergic/glutamatergic effects. if i didnt know better id mistake it for propofol or something. and it just gives such intense bliss and relief from fear and pain. It goes beyond anything ive taken for sound sensitivity

really the only downside i can think of is that it may not (I dont know yet) have long lasting beneficial effects and its really really really expensive. Its the first expensive treatment ive tried. there are certainly many who have spent as much on a single doctor visit that yielded less, or another experimental treatment course like ivig or ozone, but this still is way too expensive.

and yet--its amazing how it obliterates anxiety without being a benzo. like totalluy obliterates it. it would be nice to have this post surgery, i think, even though it is far too expensive.
 
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Memantine helps some.


Opioid agonists always help, but they have rapid tolerance , so go in same category as benzos.

Ketamine always helped a LOT , but hurt bladder. I'm considering a drug to help my bladder heal and tolerate the ketamine but honestly the ketamine has other problems, like can be neurotoxic if used too often or at too high of a dose, so I'm wondering if it's really worth the trouble.

I will be trying bromantane at higher and higher doses to see if it helps based on what @Hip said about dopamine, amisulpride, and sensory gating.


Considering trying low dose salvia divinorum for it but unsure.
 

judyinthesky

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@frozenborderline I like your experiments :)
May I ask why Benzo as needed is not an option?

I've read in the ME and the brain Facebook group that LDN helped some with hyperacusis.
I would also like to add that leaks of cerebrospinal fluid can contribute to hyperacusis. Brain not getting enough cushion. At least that is what I experienced.