Hyperacusis causes and treatments

debored13

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have been struggling with this symptom for the past few months since my symptoms worsened. It gives me a ton of despair , because I’m a musician by trade and listening to music was my main way of passing the time and keeping myself mentally and emotionally together before this. I have found articles about the relationship between hyperacusis and chiari. I may have cci/aai and have many of the signs. I am wondering if treatment for cci will resolve this. Despite being bedridden and having no social life, the biggest blow for me is not being able to listen to music. It’s affected my mental health very badly.

I also wonder how much sensory perception and hyperacusis is related to gaba/glutamate/ion channels. I have been prescribed Ativan and it helps with the hyperacusis a decent amount but one can’t simply take Ativan all the time. I am curious about the effect of lidocaine, ketamine, xenon, lithium, and various gabaergics on this problem.

The other thing I was considering is the possible relationship btwn mcas and hyperacusis. It seems that mcas May play a role in autism which also has this sensory issue. I have many other symptoms of mcas like random rashes /itching and allergic reactions to changes in air quality. I will be experimenting with some non drowsy antihistamines and mast cell stabilizers when I can get them, and see how it affects my hyperacusis.

Oh and lastly, in reading about hyperacusis I have found that there’s a relationship between this and misophonia. Both my sister and I have misophonia to an extent although hers is more severe. I wonder if there are some uncovered genetic links here.
@Hip what do you think about the possible causes and solutions to hyperacusis
 

debored13

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So I have been looking at quite a few different things for this. I have been considering high dose amoxicillin, mast cell drugs, various gabaergics, nmda antagonists Like ketamine (unfortunately ketamine is somewhat neurotoxic unlike the perfect miracle drug xenon).
I have also considered psilocybin. Am wary of the “psychedelic as panacea” thing, but still wonder about if it may help with this symptom because of sensory gating stuff.

I do get a feeling similar to dizziness/nausea with the sound overload which are mediates through chemoreceptors in the brainstem and thus it makes sense that brainstem compression via cci or chiari could cause this issue (and perhaps that scopolamine or Zofran could resolve it). So I guess we will see if cci treatments can resolve this. I will be putting some studies in this thread that have to do with this issue.
 

debored13

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https://www.ncbi.nlm.nih.gov/pubmed/25195076/
INTRODUCTION: Chiari malformation is an alteration of the base of the skull with herniation through the foramen magnum of the brain stem and cerebellum. Although the most common presentation is occipital headache, the association of audio-vestibular symptoms is not rare. The aim of our study was to describe audio-vestibular signs and symptoms in Chiari malformation type i (CM-I).
MATERIALS AND METHODS: We performed a retrospective observational study of patients referred to our unit during the last 5 years. We also carried out a literature review of audio-vestibular signs and symptoms in this disease.
RESULTS: There were 9 patients (2 males and 7 females), with an average age of 42.8 years. Five patients presented a Ménière-like syndrome; 2 cases, a recurrent vertigo with peripheral features; one patient showed a sudden hearing loss; and one case suffered a sensorineural hearing loss with early childhood onset. The most common audio-vestibular symptom indicated in the literature in patients with CM-I is unsteadiness (49%), followed by dizziness (18%), nystagmus (15%) and hearing loss (15%). Nystagmus is frequently horizontal (74%) or down-beating (18%). Other audio-vestibular signs and symptoms are tinnitus (11%), aural fullness (10%) and hyperacusis (1%). Occipital headache that increases with Valsalva manoeuvres and hand paresthesias are very suggestive symptoms.
CONCLUSIONS: The appearance of audio-vestibular manifestations in CM-I makes it common to refer these patients to neurotologists. Unsteadiness, vertiginous syndromes and sensorineural hearing loss are frequent. Nystagmus, especially horizontal and down-beating, is not rare. It is important for neurotologists to familiarise themselves with CM-I symptoms to be able to consider it in differential diagnosis.
 
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percyval577

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have been struggling with this symptom for the past few months since my symptoms worsened. It gives me a ton of despair , because I’m a musician by trade and listening to music was my main way of passing the time and keeping myself mentally and emotionally together before this.
Music is so strong. When I turned 15 I wanted to make music, it sadly turned out that I was somehow too stupid for music. But I never lost some track. Finally I suddenly managed to compose some songs, so it turned out that I might not be as stupid for music as I ever thought. Later when I got really ill, for years I very most often even couldn´t listen to any music (sadly).
If you like guitar music you might turn you intention to not-guitar-music! It´s easier because if guitars are played on all six strings it causes a lot of effort to process it, especially in rockmusic. Generel speaking, not this merged african-european power music. I found traditional african music most often easier to listen to eg, or guilaume dufay.

I have found articles about the relationship between hyperacusis and chiari. I may have cci/aai and have many of the signs. I am wondering if treatment for cci will resolve this. Despite being bedridden and having no social life, the biggest blow for me is not being able to listen to music. It’s affected my mental health very badly.

I would be sceptical, but I don´t know much about any surgery and cci. To me it seems like a follow up. I have shrunken after my ebv for 4cm. I am on my slow way though, reversing the impact on my immunesystem since three years - and now by an additional influence suddenly I regained 1 cm on hight within a month! hoping for another 1 cm. (It´s the combo of gaba/taurine and sometmes tyrosine/small tryptophan, maybe? plus metals like in 0.5g milk chocolate /kg bodyweight, but not more!).

I also wonder how much sensory perception and hyperacusis is related to gaba/glutamate/ion channels. I have been prescribed Ativan and it helps with the hyperacusis a decent amount but one can’t simply take Ativan all the time. I am curious about the effect of lidocaine, ketamine, xenon, lithium, and various gabaergics on this problem.
Don´t know all stuff, lithium I would agree to some extent/respect (forgotten rn which one exactly). And agree with ion channels for sure, and other neurotransmitters. I personally turn my attention to these geometrical strange structers of inner brain, to say it at ease.


The other thing I was considering is the possible relationship btwn mcas and hyperacusis. It seems that mcas May play a role in autism which also has this sensory issue. I have many other symptoms of mcas like random rashes /itching and allergic reactions to changes in air quality. I will be experimenting with some non drowsy antihistamines and mast cell stabilizers when I can get them, and see how it affects my hyperacusis.
Having also rushes, I strangly got good effects from histidine for a while, but in combination with other stuff. Now just discovered the Fluge 2016 paper, esp. page three, figure one!
I discovered recently to have good effects from lysine, especially when taking about half an hour after having eaten meals with proteins. So, does it mean something understandable??!?
Oh and lastly, in reading about hyperacusis I have found that there’s a relationship between this and misophonia. Both my sister and I have misophonia to an extent although hers is more severe. I wonder if there are some uncovered genetic links here.
It´s of course not the same thing by definition. I though would think that this is the way to look for part of the etiology, given that your sister has misphonia too. Maybe physiological mechanisms are more interesting than underlying genetics!?
 
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debored13

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Music is so strong. When I turned 15 I wanted to make music, it sadly turned out that I was somehow too stupid for music. But I never lost some track. Finally I suddenly managed to compose some songs, so it turned out that I might not be as stupid for music as I ever thought. Later when I got really ill, for years I very most often even couldn´t listen to any music (sadly).
If you like guitar music you might turn you intention to not-guitar-music! It´s easier because if guitars are played on all six strings it causes a lot of effort to process it, especially in rockmusic. Generel speaking, not this merged african-european power music. I found traditional african music most often easier to listen to eg, or guilaume dufay.


I would be sceptical, but I don´t know much about any surgery and cci. To me it seems like a follow up. I have shrunken after my ebv for 4cm. I am on my slow way though, reversing the impact on my immunesystem since three years - and now by an additional influence suddenly I regained 1 cm on hight within a month! hoping for another 1 cm. (It´s the combo of gaba/taurine and sometmes tyrosine/small tryptophan, maybe? plus metals like in 0.5g milk chocolate /kg bodyweight, but not more!).


Don´t know all stuff, lithium I would agree to some extent/respect (forgotten rn which one exactly). And agree with ion channels for sure, and other neurotransmitters. I personally turn my attention to these geometrical strange structers of inner brain, to say it at ease.


Having also rushes, I strangly got good effects from histidine for a while, but in combination with other stuff. Now just discovered the Fluge 2016 paper, esp. page three, figure one!
I discovered recently to have good effects from lysine, especially when taking about half an hour after having eaten meals with proteins. So, does it mean something understandable??!?

It´s of course not the same thing by definition. I though would think that this is the way to look for part of the etiology, given that your sister has misphonia too. Maybe physiological mechanisms are more interesting than underlying genetics.
It’s not about guitar vs not guitar music , I experience this with most music, sadly.

I have many of the signs and symptoms of cci so I find that a very likely cause of my hyperacusis , but I wonder if it can still be treated pharmacologically. Well, benzos help. Even structural issues have symptoms that can be treated pharmacologically
 

Malea

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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.)
 

PatJ

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I haven't found any solutions or even partial remedies to hyperacusis except avoidance.

I have a curious form of something that might be hyperacusis. I can't listen to any sound from an electronic speaker. No music, no voice, and even the hiss from an old stereo can affect me. It causes me to feel dizzy, nauseous, headache, and it also reduces my ability to put sentences together and speak them (even in my mind).

The longer I listen, the worse I feel. The effect can last for days if I push it (which I don't anymore.) High frequencies are worse than low frequencies and cause the symptoms to increase much more quickly.

For more than a decade I haven't been able to listen to music, watch movies, or even use a phone. Before I became housebound I had to rely on earplugs and noise blocking headphones to enter stores, and even then I had to avoid stores with loud music that wouldn't be blocked by the earplugs and headphones.

In my case it sounds somewhat like vestibular hyperacusis (where sound is mistaken for input from the balance system and causes disruptions in balance) but being specific to electronic speakers is weird and makes me wonder if the differences in that particular artificial sound source are causing partial brain seizures due to some kind of hypersensitivity or sensory gating problem.
 

Hip

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@Hip what do you think about the possible causes and solutions to hyperacusis
I found very low dose amisulpride noticeably improves my hyperacusis (sound sensitivity). Does not eliminate it, but it helps.

My theory is that sound sensitivity is due to a sensory gating dysfunction in the brain (sensory gating is the brain's "firewall" that is supposed to prevent irrelevant sensory stimuli from reaching consciousness). I've noticed that any drug which modulates dopamine D2 receptors (as amisulpride does) has an effect on my sound sensitivity. D2 receptors are thought to be involved in the "firewall" process of filtering out of irrelevant information.

There is an hyperacusis forum, though I did not find many useful treatments the last time I looked on it.
 

Hip

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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.

For me, I hardly ever listen to music now, but for a different reason: the emotional flatness symptom of ME/CFS makes music seem dull or pointless, as music generally works on emotional feelings, but if your brain is not responding on that level, it's hard to get anything out of listening to music.
 
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PatJ

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have you been tested for CCI
No, I haven't. I did have a full head and spine MRI at one point to rule out MS, and no one mentioned anything about CCI. I also have only a few of the symptoms of CCI, which doesn't necessarily mean I don't have it, but that it's probably less likely in my case.
 

PDXhausted

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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.
 

bjl218

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I second @PDXhausted's comments regarding mold. I have what I would consider to be very mild auditory issues (tinnitus and hyperacusis). I was also living in a moldy house and moved recently. My auditory issues seem to flare a bit in my mother-in-law's house which is definitely moldy. I haven't completely figured out what sounds trigger my hyperacusis. For example, I can usually go to a rock concert with no problem. However, just having a conversation with someone whose voice happens to hit a certain frequency can trigger it.

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."
 

Lolinda

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Just very short because no energy:
My doctor is convinced that Hyperacusis is due to tensed ear muscles caused by CCI/AAI.
A further possibilitiy, in case it was not yet mentioned on this thread:
Diana Driscoll:
"The first thing that I noticed in my kids and I was that we had high intracranial pressure and being an eye doctor, I know the symptoms, which is headache, neck ache, nausea, tremor, light and sound sensitivity, and others, but they were getting lost in that mix of a gazillion other symptoms. Even more frustrating, the symptoms would sometimes come and go, but when I took Florinef to see if it would increase my blood volume, as many of us do with POTS, some of the symptoms just went through the roof "

I did not have hyperacusis but I had noise sensitivity in the sense of not being able to sleep even with smallest noises that do not bother anyone else: a so-called "sensory gating" problem. 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. There is research indicating that this works. Here are the details including which test to order.

- Fortunately, I have no more to deal with all this. Just posting in the hope that it might help anyone else...
 
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debored13

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I found very low dose amisulpride noticeably improves my hyperacusis (sound sensitivity). Does not eliminate it, but it helps.

My theory is that sound sensitivity is due to a sensory gating dysfunction in the brain (sensory gating is the brain's "firewall" that is supposed to prevent irrelevant sensory stimuli from reaching consciousness). I've noticed that any drug which modulates dopamine D2 receptors (as amisulpride does) has an effect on my sound sensitivity. D2 receptors are thought to be involved in the "firewall" process of filtering out of irrelevant information.

There is an hyperacusis forum, though I did not find many useful treatments the last time I looked on it.
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.