Hypersensitivity to noise - what's the reason?

[PatJ]

In rare cases, hyperacusis may be caused by a vestibular disorder. This type of hyperacusis, called vestibular hyperacusis, is caused by the brain perceiving certain sounds as motion input as well as auditory input. In some cases, vestibular hyperacusis can affect the autonomic system and cause problems such as loss of consciousness, mental confusion, nausea, or extreme fatigue.

Thank you for posting that excerpt Wayne. I now have a name for this part of my condition. That my brain is "perceiving certain sounds as motion input" probably explains why my balance is effected almost immediately when I hear certain sounds. I get the other effects listed as well.

In my case vitamin D (even from sunlight) increases my sensitivity and makes all the symptoms worse. It also worsens my sensitivity to certain types of light which result in similar symptoms to the hyperacusis.

 

[Wayne]

In my case vitamin D (even from sunlight) increases my sensitivity and makes all the symptoms worse. It also worsens my sensitivity to certain types of light which result in similar symptoms to the hyperacusis.

Hi @PatJ,

Sensitivity to Vitamin D as you describe can be an indication to a Lyme infection. Have you ever gotten tested for that?

 

[PatJ]

Sensitivity to Vitamin D as you describe can be an indication to a Lyme infection. Have you ever gotten tested for that?

I was tested in 2008. I don't remember what type of lyme test it was but the result was equivocal. Nothing was done after that. I'll look into getting tested again. Is there a particular type of test that is more accurate than others?

I've recently discovered that I'm not as sensitive to vitamin D. The only recent treatments I've had are: LDN for a couple of months (and still taking it); a couple of weeks taking lauricidin, oregano oil and grapefruit seed extract (didn't notice any effects); and increasing my dose of iodine to 1mg per day (tried 3mg and started detoxing with kidney pressure). LDN is an immune modulator, and the others have anti-viral effects.

 

[ZuluX]

Hi, I also have intolerance to noise - restaurant kitchen cutlery clatter and rooms full of chatter are the most uncomfortable. I never had this before my ME started. My intolerance seems to be worse on some occasions over others. I've put the noise sensitivity mainly down to depleted magnesium, as very low levels of magnesium weaken your nervous system and response to external stressors (similar to a compromised adrenal system). I have been tested for magnesium, and it's virtually non-existent in my body.

 

[Gondwanaland]

My husband and I had extreme noise intolerance (and tinnitus) when we had a high glycemic diet.

 

[Teddybear92]

I am hypersensitive to some noise. It stops me sleeping. For years I used in fact NOISE to help which I believe has affected me neurologically now..... I stopped using the earphones with loud noise about 3 months ago, about one or two of the weird Neuro symptoms I have now are the same or similar to what I had when using them..I might have damaged my brain and nerves using that noise.
When I go to the recycling centre they crash glass bottles and I always wince and it hurts. No one else has the problem except my mother who also winces.
I think this hypersensitivity runs in the family but most of my symptoms seem me only.

 

[Uk125250]

It could be adrenal insufficiency. You might want to get checked for it. ACTH stim test. I have Addison's and I jump out of my skin all the time. A few times a day. I feel really sick when my heart rate gets elevated, so I hate it too.

 

[Tammy]

hypersensitivity to noise I think is the result of big time central nervous system inflammation which can be caused by a myriad of things but I think the biggest cause of the inflammation is due to viral/bacterial neurotoxins.

 

[Mohawk1995]

I know I might get some push back but I am going to say there are two things that I consider when I see this clinically:

What is hypersensitivity to noise from a physiological perspective? To me it is hyper-excitability somewhere along the neural auditory pathways as a result of up-regulation in the transmission, reception or processing of these pathways. It could be anywhere along the pathways however most likely the result of "Central Sensitization" and the resultant Neuro-inflamatory processes associated with it. In other words something has caused that gain in your auditory system (microphone) to be turned way up. Barely tap the microphone and hear something resembling a bomb going off. This does not answer why or what is causing this response, but it does help to understand it.

Second issue is what may be causing this up-regulated response. To that there are two answers (could be one or the other or both to varying degrees):

1) Could certainly be one, two or more of the explanations given. Something disease state, biochemically related, something mechanical in the ear itself or some sort of metabolism issues (or any other issue related to or possibly unrelated to auditory functions). I know...no real answer there, but all possibilities should be explored.

2) Could be a mal-adaptive response at the cellular level and/or all the way up into the processing and response centers of the brain. In other words, it could be that whatever caused it to begin with is no longer present but the mal-adapted protection response continues to run on and on. It could also be a summation of multiple less dangerous/sinister issues that have in sum elevated the threat level to a point where a mal-adaptive protection response is activated and then maintained. In ME/CFS I could see the opportunity for both. I would explain the summation process as if the pot of water on the stove which should be on simmer is now turned up to Medium High by multiple less threatening issues then it just takes one more relatively benign issue to make it boil.

From a clinician standpoint with people I have treated for "physical" issues and also had hypersensitive hearing these explanations fit what I have seen. I am sure there are others as well.

 

[Valentijn]

In other words, it could be that whatever caused it to begin with is no longer present but the mal-adapted protection response continues to run on and on. It could also be a summation of multiple less dangerous/sinister issues that have in sum elevated the threat level to a point where a mal-adaptive protection response is activated and then maintained.

This doesn't make sense when the "mal-adaption" only manifests during a crash, or otherwise fluctuates.

A more sensible explanation is encephalitis triggered or intensified by a pathological reaction to exertion. Which might be why it's included in the disease name

 

[Mohawk1995]

A more sensible explanation is encephalitis triggered or intensified by a pathological reaction to exertion. Which might be why it's included in the disease name

I agree that is a very plausible explanation as well. In the vein of the Cell Danger Response which is more micro or cellular in scope. I would look at my view as a more Macro view of it. Both could be happening at the same time the way I see it. Or maybe not???

 

[BruceInOz]

My sound sensitivity is worse the worse I am generally. When I am more sensitive, loud noise that fills the frequency spectrum causes me to instantly feel much worse all over meaning a big impact on my cognitive processing and causing aching leg muscles etc.

I think it's interesting that much the same happens if I try to find something in a very cluttered space when I am in a low state. Maybe it is all just about energy metabolism -- noise processing and pattern matching require more energy than my brain cells can supply. It would certainly fit how it feels to me.

 

[Binkie4]

I have some noise sensitivity eg cannot have music or background noise and try to talk to someone: it scrambles my head.

However my worst sensitivity is in traffic. I cannot bear being a passenger in a car particularly on a motorway with cars and lorries rushing pasit. The noise, lights, uncertainty of what is going on terrifies me. I have been known to scream out loud ( no control over it) while in a car being overtaken in both lanes. It is clearly a sort of hyper vigilance but I don't have a scientific explanation.

Unfortunately all my family live motorway journeys away so this is happening repeatedly, and I have a medical condition with treatment only available in Hull, whereas I live in London. Treatment would require 6-8 visits to Hull which I can't face.

It has worsened over the last year. Not sure how long I can keep doing these journeys which are terrifying. Have a 95 year old mother who lives 200 miles away. Rail travel is easier once on a mainline train but exhausting at either end. I just trust to breathing but have no other strategies. Anyone any ideas?

 

[daisybell]

My instinct about this hyper-sensitivity is that it is quite like what people who have had head injuries experience. I think there are a combination of factors at play - firstly, low energy production which means the brain is using more resources to try to compensate; secondly, that we do probably have microglia inflammation - and that this inflammation in the brain makes all the cells hyper-sensitive; thirdly, when you are tired, your brain does not filter out irrelevant information as easily so everything competes and it's overwhelming. Sort of like a cross between being autistic and having a traumatic brain injury... and when we are in a relapse or PEM, the whole thing is worse.

@Binkie4 - I find I'm better in the back of the car, or in the front with the seat reclined. I would suggest earplugs and a mask for covering your eyes. I also find the speed makes a big difference... once it's over about 50mph/90kph, I feel much much worse. Can you do your journeys on non-motorway roads?? I'm better to take longer and not push my limits during the drive than try to get it over with quickly. Plus you can always stop for breaks.

 

[Dainty]

Based on my experiences with very severe hyperacusis, which is now much better, I have a theory.

So, I personally discovered my PEM was mainly caused by my tissues being physically incapable of resting, even when fully relaxed or sleeping. This is why I didn't get that sense of relief and rest that healthy people get when they rest. had no idea until cranial osteopathy treatments allowed my body to rest, and I was *shocked* at how PEM literally melted away the moment I began resting. You can read my blog post about it here.

But my noise sensitivity got much worse.

It was already so bad that my mom (caregiver) had developed severe anxiety of being around me at all, as the slightest "ding" of a dish would literally have me screaming in agony. And then it got worse from that.

What I discovered for myself is that my noise sensitivity is worst when I need to rest. Just like a healthy person would get cranky at being woken up often by a noise they might not even notice during daytime hours. I realized I was being "woken up" from a state of rest my brain desperately needed. Even if I wasn't asleep. Even if I was sitting up doing stuff on my computer. Because my body was so flat-out exhausted from not being able to actually rest a single second for years on end that it was pretty much always resting as much as it possibly could, and noise jolted it out of that rest. The so incredibly desperately needed rest.

So when my body learned how to rest even deeper, the noise sensitivity got worse. Temporarily. After a few months of resting it began to get better.

These days, the initial sound usually doesn't cause my any reaction, but I still have a limit to how much repeated/continuous noise I can handle. I also have PTSD, and some specific sounds, like dishes clanking, now trigger flashbacks so that's fun too.

When I'm in a crash, the sound sensitivity can, for that day, spiral back to nearly as bad as it used to be. My body becomes just as desperate for rest, or the closest thing it can get to it, and the noise forces it otherwise. This is also why it can become a horrendous spiral - more noise leads to greater exhaustion, which means I even more desperately need rest, which leads to increased sensitivity.

All I know is this is the way it seems to work for me.

 

[Binkie4]

@daisybell

Thank you for your suggestions. Will certainly have to do some journeys so will have a chance to try them. I don't think travelling off motorways will be possible. It's a tricky one but longer journeys mean longer sitting upright which causes pem and then the purpose of the visit is lost. It's been tricky for a while trying to work out the best option but actually not sure there is one. Travel by road leads to a lot of pem I find as does visiting family that I see only about twice a year. Typical ME issues. But thanks.

 

[PatJ]

...but longer journeys mean longer sitting upright which causes pem...

That may arise from orthostatic intolerance and/or low blood pressure. Have you tried compression socks to see if they help to reduce your PEM by keeping more blood in the upper part of your body?

 

[Binkie4]

@PatJ

Thank you for the suggestion but I wear compression tights, prescribed for another condition, all the time, and BP is high without bbs. Am sure I have orthostatic intolerance altho it's not diagnosed. My GP and cardiologist are both unsympathetic about ME and its symptoms, but I know it from the fact that I choose to carry a stool with me in case standing still is necessary, but even walking is uncomfortable now. Sitting is better and lying better still. Can feel quite well then mostly, but upright is out.
I have wondered about the blood volume issue but again, neither GP nor cardiologist knew about pwme' issue with blood volume. I reattended my local NHS cfs clinic about 6 months ago hoping to talk to the immunologist who is in charge, but only saw the nurse as the doctor only sees those " in need of diagnosis" and I have been diagnosed for 9 years.......
So frustrating, this condition but the hyper vigilance is becoming quite a severe problem when a car passenger, and as I said, I do need to do long car journeys to see family.
Just another facet of ME/cfs, but until recently, it hasn't been a severe problem. Now it is. Good wishes to all with hypersensitivity issues. It feels as though it should be controllable but it isn't.

 

[futuritycarpaccio]

im wondering if anyone tried very low dosage haloperidol for this issue?

Like someone else posted before, I also think this is a sensory gating disorder. One of auditory system.

From my notes and studies, I concluded it wasnt P50 but I dont remeber anymore the ERP variant, but it involves mismatch negativity. Check out mismatch negativty definition and you will see it is exactly the definition of a misophonic trigger:

"The mismatch negativity (MMN) or mismatch field (MMF) is a component of the event-related potential (ERP) to an odd stimulus in a sequence of stimuli......In the case of auditory stimuli, the MMN occurs after an infrequent change in a repetitive sequence of sounds (sometimes the entire sequence is called an oddball sequence.) For example, a rare deviant (d) sound can be interspersed among a series of frequent standard (s) sounds (e.g., s s s s s s s s s d s s s s s s d s s s d s s s s...). The deviant sound can differ from the standards in one or more perceptual features such as pitch, duration, or loudness."


In any case, I remember I saw haloperidol normalized the sensory gating, however I cant remember if in everyone or just schizophrenia.

 

[Hip]

im wondering if anyone tried very low dosage haloperidol for this issue?

I find very low dose amisulpride helps with the sound sensitivity. I think that dose of amisulpride is going to be safer than haloperidol, in terms of side effects.

I also recently read that nicotine helps improve sensory gating (which may explain why lots of schizophrenic patients smoke). So nicotine may help with the ME/CFS sound sensitivity.