Hyperacusis causes and treatments

[frozenborderline]

I had a gradual onset of ME/CFS with significant hyperacusis, tinnitus, light sensitivity and muscle problems. It progressed to the point where I became completely bedridden and had to wear ear plugs 24/7 (and ear muffs on top of them) and have my room blacked out completely.

We later discovered a neurotoxic mold in our house that was venting into the bedrooms. We eventually moved out and got rid of all our belongings. To prepare to sell the house, we had it first remediated and then ozoned. On the day that the ozoning was completed, my husband entered the house not long after the machine was turned off, and spent about two hours in the house. The next day, he had such a significant migraine, hyperacusis and tinnitus, that he had to go to the ER. That was about a year and a half ago, and he has struggled with nearly constant ear pain, hyperacusis and tinnitus since then. The point of explaining this long story, is to say that we have spent a significant amount of time researching hyperacusis recently.

My hyperacusis/tinnitus has improved significantly since moving out of the house, but it has not gone away. I am pretty sensitive to medication, so have tried mostly “natural” things.

The things that have helped me the most have been:
- taking activated charcoal
- mold avoidance (moving into a mold free house and using air filters)
- alpha lipoic acid occasionally
- icing
(And for my light sensitivity, I actually have found putting some cortisone cream on my eyelids to be helpful, but not really sure if this is safe or not! But it does help significantly)

My husband, on the other hand, has not found such relief with simple measures. He has met with several audiologists, ENTs, an allergist, and even leading hyperacusis researchers. What we have found is that are many different pathways that can lead to hyperacusis (physical injury such as an accident, toxin exposure, noise exposure, etc) but they present with similar symptoms. The treatments are different. It is speculated that mast cells can definitely be involved as well.

The things my husband has found to help him:
- a low dose of klonopin at night
- a low dose of amitriptyline at night (acts as an antihistamine that can get into brain, and the anti-cholinergic effect might also be helping)
- a high dose of alpha lipoic acid in a timed release form
- a small dose of oral prednisone only during bad flares
- mold avoidance / air filters. He also took some charcoal and cholestyramine for a few weeks following his exposure but stopped after that.

Things that my husband hasn’t tried yet, but is interested in trying: ketotifen, atarax, PEA with luteolin, cranio-sacral therapy.

For us, it seems that our sensitivities are of an inflammatory nature. But calming the inflammation down has been difficult to figure out how to do!

PS I would encourage anyone struggling with chronic health issues to have their house mold tested. I was absolutely convinced that we couldn’t possibly have a mold problem until we had a good mold inspector come and test. It would have saved us years of grief if we had just done it earlier. I’m not saying everyone’s problem is mold related, just that I very much regret not having it checked it out earlier in my disease process.

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

 

[frozenborderline]

For those of you interested in taking a binder to try to get rid of the mold (and other toxins), you might want to consider Quicksilver UltraBinder. It's not cheap, but it's definitely less expensive then, say, compounded cholestyramine. I take it once a day a couple of times a week in "maintenance mode."

you can’t really benefit from binders until you’re away from mold, though, right? I am working on it but there so many things I despair

 

[frozenborderline]

In terms of listening to music, I don't know if you are the same as me, but personally I find the deep bass and extreme treble part of the music much more disturbing than the mid-tones. So possibly with a graphic equalizer app you might be able to cut out the bass and treble a bit, and that might make the music easier to listen to, in terms of avoiding sound sensitivity.

Actually the higher frequencies seem to disturb me more. But it’s not just frequency and has to do more with totqlninformation/sensory stuff like the sensation of “discreteness “ or sharpness. Hence a standard song or instrumental music that has voice or guitar parts is still rough whereas drone music like Elaine radigue is tolerable. And anything “busy” I can’t deal with.

Unfortunately this symptom is the worst I’ve ever had, I don’t have the emotional flatness you speak of and still feel an emotional need for music, yet sensorily can’t tolerate it. It was actually one of my main coping mechanisms since I was a musician before getting sick.

 

[bjl218]

That depends... The conventional wisdom is that if you're suffering from mold toxicity, nothing will help until you get out of the mold. However, I few things come to mind:

• You can have other toxins that you might be able to reduce by using a binder. That's why I like the UltraBinder. If its claims are true, it can bind a number of toxic substances.
• Even if you're still in mold, I think most would still benefit by reducing biotoxins circulating in the body.
• If you don't yet know whether you're living in mold, but may have been exposed to mold elsewhere, using a binder might help.

These are just my opinions of course. I have no data or references to back this up.

you can’t really benefit from binders until you’re away from mold, though, right? I am working on it but there so many things I despair

 

[bjl218]

This is very interesting and fits in with the Nemechek protocol which I've been looking into recently. This supports the "inflammation as root cause" theory and that supplementing with high-dose fish oil helps to reduce that inflammation.

It slowly went away. It was just when I corrected my poor rbc DHA and EPA levels by eating tons of mackerel and sardines very frequently.

 

[frozenborderline]

That depends... The conventional wisdom is that if you're suffering from mold toxicity, nothing will help until you get out of the mold. However, I few things come to mind:

• You can have other toxins that you might be able to reduce by using a binder. That's why I like the UltraBinder. If its claims are true, it can bind a number of toxic substances.
• Even if you're still in mold, I think most would still benefit by reducing biotoxins circulating in the body.
• If you don't yet know whether you're living in mold, but may have been exposed to mold elsewhere, using a binder might help.

These are just my opinions of course. I have no data or references to back this up.

Given that cholestyramine is a binder That works via bile acid secretion I wonder if Tudca or udca would help

 

[Hip]

The popular science idea of psychedelics seems to be based on perceptual or sensory gating and thus I wonder if they may play a role in treating hyperacusis , even if the hyperacusis has an organic basis.

That's very true, Aldous Huxley's idea of psychedelics "opening of the doors of perception". Modern science might translate that phrase as "the opening up of sensory gating". Maybe psychedelics affect the brain receptors that are associated with the sensory gating filter.

It's interesting that sensory gating issues are found in autism and schizophrenia; might explain the extraordinary skills of the autistic savant, who are acutely aware of the most minute details in their environment.



When us ME/CFS patients try to explain our horrible sound sensitivity to other people, I imagine these people will conceive of sound sensitivity probably in terms of ordinary sounds becoming subjectively perceived as louder in those with hyperacusis.

But for me sound sensitivity (hyperacusis) is not to do with volume and loudness, but with the way ordinary sounds become unpleasantly intrusive into consciousness itself. It's as if sounds penetrate right into the inner sanctum of your mind.

I remember when I was healthy (before ME/CFS), if I heard for example the loud noise of a car alarm going off in the street, very quickly that sound became completely filtered out of my conscious awareness, and I'd be able to continue concentrating on whatever work I was doing, in spite of the continuing loud alarm outside. The sound would just be faded out of awareness, even though it still was continuing.

In fact, so efficient was my sensory gating filter, that the next time I would become consciously aware of the alarm was when it would stop around 10 minutes later. But while it was going on, it never entered into consciousness, except for the first few moments when the car alarm first started.

 

[frozenborderline]

But for me sound sensitivity (hyperacusis) is not to do with volume and loudness, but with the way ordinary sounds become unpleasantly intrusive into consciousness itself. It's as if sounds penetrate right into the inner sanctum of your mind.

For me it’s about both, but yes, I imagine this is common, and why white noise is not intrusive for most with this.

 

[Hip]

For me it’s about both, but yes, I imagine this is common, and why white noise is not intrusive for most with this.

Louder noises are worse than softer ones in terms of causing unpleasant effects, but with my sound sensitivity I don't perceive sounds as any louder than they are; I just feel that these sounds get "under my skin", ie, they penetrate unpleasantly deeply into my mind.


In terms of white noise, for me that's a funny one. Whereas I am fine with recorded sounds of waves breaking on a beach (which is white noise-type sound), the sound of a vacuum cleaner I find horrendous (I believe that's also a white noise-type sound). Lots of ME/CFS patients I understand cannot tolerate vacuum cleaner noise.

And deep bass notes really get under my skin, and are of the worst thing for my hyperacusis. If car pulls up outside with someone playing music with a driving bass line: boom, boom, boom, boom, it's horrible for me. Very disturbing mentally.

 

[talkinghead]

But for me sound sensitivity (hyperacusis) is not to do with volume and loudness, but with the way ordinary sounds become unpleasantly intrusive into consciousness itself. It's as if sounds penetrate right into the inner sanctum of your mind.

This is so on point man! It's like some sounds are literally raping my consciousness/mind..

 

[Hip]

It's like some sounds are literally raping my consciousness/mind.

Yeah, "raping" is a good word to describe it.

 

[frozenborderline]

It’s really the most bothersome symptom I have. Do you think the fact that benzos really help with it is strong indicator that sensory gating is related to gaba/glutamate ?

 

[Malea]

Do others get abnormal extreme sounds in the ears after severe overstimulation, too?
I get this and it is a sound like squealing train brakes and it feels a bit like electro shock. Extremely uncomfortable. And not like usual tinnitus.

 

[Hip]

Do you think the fact that benzos really help with it is strong indicator that sensory gating is related to gaba/glutamate ?

I am not sure, unfortunately I've not read that much about sensory gating. Google says benzodiazepines also work on dopamine, so their benefits for sound sensitivity might derive from these dopaminergic effects.

In this article, it says:

Some physicians have recommended benzodiazepines for their patients with hyperacusis.

Benzodiazepines can have mast cell stabilizing functions. Is that the reason some people with hyperacusis respond so well to them? I don’t know, but it’s certainly something to think about.

I’ve experienced quite a bit of improvement to my hyperacusis since starting a low histamine diet, adding in anti-inflammatory turmeric supplements, and taking dye free Benadryl when I have the worst hyperacusis and tinnitus flares. Antihistamines can stabilize mast cells and some research suggests mast cells can play a role in some inflammatory processes.

@Marco wrote some good blogs on sensory gating in ME/CFS some years ago:

Not Fatigue After All? New Model Suggests Other Symptoms Better Explain Chronic Fatigue Syndrome (ME/CFS)

Japanese Sensory Gating Study Reveals Profound Cognitive Deficits Present in Chronic Fatigue Syndrome

 

[PatJ]

@PatJ but don’t you think it could explain your sensory issues?

Maybe it's possible but I think my sound issues are tied in with my visual intolerance issues. I can't stand regular computer monitors for very long. I can't tolerate LED lighting so new monitors aren't usable for me. I have to rely on older, faded fluorescent monitors set to white text on a black background, and even then I've only found a couple that I can tolerate.

The light (and possibly sound) sensitivity is tied to my microbiome. I think this because certain probiotics or probiotic foods can make a significant difference between tolerating the light from a computer monitor for an hour vs multiple hours. Some probiotics lead to more sensitivity/lower tolerance, others, like sauerkraut lead to better tolerance (although that tolerance fades after a certain number of weeks.)

Do others get abnormal extreme sounds in the ears after severe overstimulation, too?

My tinnitus can become louder when I more tired but I think you're experiencing something else.

There was an alarming incident a few years ago where I was standing near a kitchen stove with the loud exhaust fan running. Even though I was using ear plugs and ear muffs, the sound was still drilling into my brain. Once I turned off the fan and took off the ear muffs I realized I could still hear the sound of the fan. It was still loud and still very disturbing. It was almost like my neurons had gotten stuck and were still firing in response to a phantom sound. It slowly faded over roughly a minute.

 

[talkinghead]

Maybe it's possible but I think my sound issues are tied in with my visual intolerance issues.

I've read some of your posts in other threads and was aware of your visual issues and I was infact refering to both, visual and audio. I have very similar issues to yours (I would say identical, but I can tolerate monitors for longer, but it's very unplesant feeling) and on top of that I have multiple problems with spine and I'm showing signs of EDS so I was thinking if this could be CCI. Maybe it's just wishful thinking, that it all could be fixed with a surgery.

The light (and possibly sound) sensitivity is tied to my microbiome.

Interesting, could you provide names of the probiotics which helped?

 

[PatJ]

Maybe it's just wishful thinking, that it all could be fixed with a surgery.

It would be nice wouldn't it? It does work that way for some people. I used to know someone who had been mis-diagnosed with MS but then a few years later she had neck surgery and all her problems were resolved.

Interesting, could you provide names of the probiotics which helped?

In thinking more about it, I think almost every OTC probiotic I've tried has either made my visual sensitivity worse or had no influence. Some types of yogurt make it worse but I can't remember which types. Kefir helps for a time but then the sensitivity increases. Sauerkraut helps for a time and then either stops helping or also flips over to opposite effects. Since a serving of sauerkraut supposedly contains trillions of probiotic bacteria then maybe I end up overdoing it. I'll try pulsing it - one day with, another day without, to see if the positive effects can be retained longer.

I recently re-discovered that vitamin C increases my light tolerance. I'm taking 2-3 grams of sodium ascorbate per day. I use that form because it's pH neutral and won't increase the acidity of my already too acidic urine.

 

[talkinghead]

Sauerkraut helps for a time and then either stops helping or also flips over to opposite effects.

I'm trying to avoid foods high in histamine now, but maybe I'll try this later.

I recently re-discovered that vitamin C increases my light tolerance.

I'm doing few grams a day, but I don't think it's doing anything except making my urine more expensive.

 

[Lapis_x]

Just very short because no energy:
My doctor is convinced that Hyperacusis is due to tensed ear muscles caused by CCI/AAI.

(I‘m pretty sure, though it must be at least partly because of inflammation/Mcas/... and find Ativan helpful, too.)

what is CCI/AAI?

 

[Malea]

It means craniocervical and atlantoaxial instability.