Hyperacusis causes and treatments

[gbells]

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.

 

[frozenborderline]

I address some plausible causes of hyperacusis here https://walkerstorz.com/me-cfs-etiology/

 

[Dufresne]

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.

 

[PatJ]

The fix for me is singing. Clears it right up.

Do you have any idea why singing helps?

 

[Dufresne]

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.

 

[frozenborderline]

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.

 

[frozenborderline]

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]

@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.

 

[b3rkolas]

@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.

I have the same thing that started after CSF leak. Now my loudness h turned into pain H (aka noxacusis). It's been 5 months and seems worsening. I tried amitriptyline 10mg a day which didn't work.

 

[judyinthesky]

I have the same thing that started after CSF leak. Now my loudness h turned into pain H (aka noxacusis). It's been 5 months and seems worsening. I tried amitriptyline 10mg a day which didn't work.

I'm so sorry. It is hell. I can't have people in the room and opening the windows for air is very difficult due to the birds singing, it is that bad. Is your leak iatrogenic (from medical treatment) or spontaneous?
If spontaneous, taking collagen might be an option

 

[b3rkolas]

I'm so sorry. It is hell. I can't have people in the room and opening the windows for air is very difficult due to the birds singing, it is that bad. Is your leak iatrogenic (from medical treatment) or spontaneous?
If spontaneous, taking collagen might be an option

Well, to be honest, i have suspected CCI, hEDS and MCAS trifecta since childhood. I have numerous weird unexplained symptoms.

5 months ago, i was streching my ligaments in suboccipital area and to release the muscle tension. Almost all of fight-flight symptoms spiked including POTS, dysautonomia, CSF leak(from nose) severe loudness H, headache when upright, nystagmus, severe tinnitus and many more. Everything subsided except Hyperacusis which turned into noxacusis and never went away.

My shoulder, face and ear muscles so tightened to a degree that when i smile my ears start stabbing pain. Also my eardrum rumbles especially for high-pitched noises. I guess its related to TTTS and inflammation.

My most brutal symptom is not TTTS, its noxacusis. It's pure hell. I am working on central sensitization and neuroplasticity. But my noxacusis is mild compared to others. Mine execarbates when i talk much. My tolerance level is good for outside noises except high-pitched ones.

I am only 25M and it's too much for me. I don't know. I haven't tried medicaments except amitriptyline 10mg which didn't even touch my burning pain.

Most of people's cause is acoustic trauma. But seems that you and mine caused by mild neck trauma.

 

[frozenborderline]

@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.

Benzos cause dependence quite quickly. If you have sound sensitivity all the time what does "as needed " mean. Of course it's an option but it's not ideal as if you want to reduce sound sensitivity more than once a week you will then be reliant on something which causes serious dependence

 

[MonkeyMan]

I had hyperacusis for several years, but it gradually went away. I was careful to avoid loud places (e.g., concerts, sporting events) and to carry earplugs in case I was in that environment.

The other thing that really helped was I started to use a white noise machine when sleeping at night. Before that I would just use earplugs to block out sound, but then I learned that your ears need stimulation even when you're sleeping; otherwise the risk of hyperacusis increases significantly.