Hypersensitivity to noise - what's the reason?

[caremom]

Does anyone know why some me/cfs sufferers are hypersensitive to noise to the point of developing a phobia to it? What can help reduce the sensitivity to noise? Is this a neurological issue or MTHFR mutation?

 

[Valentijn]

Is this a neurological issue or MTHFR mutation?

It has nothing to do with the MTHFR gene. The research into those variations only show a connection with increased rate of birth defects. Those variations are also extremely common - if they caused sound hypersensitivity, everyone would have it.

 

[Thinktank]

By phobia of noise you mean a disgust of certain sounds? Or noise in general?
Maybe you suffer from misophonia also known as selective sound syndrome.
I have misophonia and my triggers are mostly mouth-sounds like chewing, i can't be in a cinema with a room full of people eating popcorn, that just enrages me.

Misophonia, literally "hatred of sound",[1] is a rarely diagnosed disorder, commonly thought to be of neurological origin, in which negative emotions (anger, fright, hatred, disgust) are triggered by specific sounds. The sounds can be loud or soft.[2] The term was coined by neuroscientist Pawel Jastreboff and biological scientist Margaret Jastreboff[3] and is sometimes referred to as selective sound sensitivity syndrome.[4]

 

[JohnCB]

Does anyone know why some me/cfs sufferers are hypersensitive to noise to the point of developing a phobia to it?

I have noise sensitivity. I assume it is neurological. I wouldn't say I had a phobia. A lot of us have some sort of noise intolerance. Often it depends on what else I am trying to do. I can do my few kitchen chores with ClassicFM in the background. I can also have the radio in the background while I am reading in bed before going to sleep, but I have to stop reading when the announcer speaks between pieces.

Nowadays I am rarely in the company of more than one person but in the past when I was in a group and it split into two conversations, that did my head in as I could not listen to one conversation and shut the other out. I watch very little TV as I cannot cope with movement and sound together. The last time I watched a film on TV it made me quite ill. I am sure that in my case that it is in the brain processing of sound. It also feels as if I cannot process at full speed, that my brain has slowed down and can only cope with simpler demands.

I try sometimes watching University Challenge as something that is kinder to the senses but I have a different problem with this programme as some of the questions are quite long and I have forgotten the beginning by the time Paxo has reached the end. However when I can actually get the question in its entirety, the rest of my brain can still do a decent stab at the answers. I don't have the radio or music when I am using the computer like this: I need to devote my concentration to this one activity, so it interconnects with my concentration problems. Like most things with ME it is easier if I am better rested or coping better in general. But it is a very real problem. When I am worse, sudden unexpected noises, even the cat, will freak me.

 

[Old Bones]

Does anyone know why some me/cfs sufferers are hypersensitive to noise to the point of developing a phobia to it? What can help reduce the sensitivity to noise?

I don't know why some ME/CFS sufferers are hypersensitive to noise. However, this symptom appears under the heading of neurological abnormalities on many lists. The 2012 International Consensus Document describes "structural and functional abnormalities within the brain and spinal cord . . .consistent with pathological dysfunction of the regulatory centers and communication networks of the brain" and disruption of "CNS homeostatis" as possible factors in our neurological abnormalities. So, perhaps when they figure out this category of impairment, it will explain your noise sensitivity.

@Thinktank mentioned "misphonia" -- a hatred of sound. There is another technical word that may apply to your situation -- "hyperacusis", which is defined as "a health condition characterized by an increased sensitivity to certain frequency and volume ranges of sound". Perhaps this is what you are dealing with. If so, I can understand why you feel you've developed a phobia of sound. When even the slightest sound feels unbearable (eg. someone breathing, turning the pages of a book), one can feel desperate to avoid things other people don't even notice. At times, you wonder if you are going crazy. You're not.

Take a look at the website. It's the first one that popped up in my search. I'm not familiar with it -- it's been a few years since I've suffered horribly from this symptom. But, it's a place to start.

A number of years ago, hyperacusis made my life so miserable, I signed up for a psycho-educational course designed for tinnitus sufferers. This was only slightly helpful in teaching me to change my interpretation of the disturbing noises in my environment. It may just be a coincidence, but what I think really helped was removing gluten from my diet. Because since then, hyperacusis hasn't been a problem for me. Or, perhaps it just got better on its own.

I wish you luck in finding a solution. Like tinnitus, experiencing noise sensitivity can be excruciating, when normal environmental sounds seem like the whole world is screaming at you.

 

[jimells]

I am sensitive to both light and sound, although much less than a few years ago. It's like the volume control knob in my brain is turned up too high. It is worse when I experience PEM.

I have a pair of cockatiels, who are not really very loud, especially compared to cockatoos and other larger parrots, but I used to have to wear ear plugs in the morning, when the sound sensitivity was at its worse and they were doing their morning calls. I used musician's earplugs that allow low-volume sounds but block louder sounds.

I believe part of my sound and light difficulties are due to slow brain processing. Trying to interpret rapid sound and light changes seems to overwhelm the brain and cause anxiety as well as headache. The neuro testing arranged for me by Social Security confirms my brain is slower than expected.

Like @JohnCB I can tolerate few films or TV programs - flashing lights, rapid edits, and shaky cam quickly drive me to the edge of sanity, and I often wonder how anybody can stand watching those programs. I haven't been to a movie theater in ten years, maybe longer. The last time I went, I was shocked at how loud the movie was - I think I stuffed a napkin in my ears to tolerate the noise.

At different times in my life I have lived in urban environments, but I could never do that now - the noise would quickly drive me over the edge. A few years ago I went to Massachusetts to see a doctor. It was so loud, all the time, that I could barely stand it. And no one there seemed concerned about noise or adding to it. At the crack of dawn some knucklehead started up his Harley right outside my motel room and let it idle for 1/2 hour. Too bad no one stole it. There is a reason why Mainers call people from Massachusetts "Massholes".

For me the sound and light sensitivity also correlate with migraine pain intensity, that is, as light and sound sensitivity have improved, so has the severity of migraine pain. It's impossible for me to tell for sure, of course, but I have found that CoQ10 seems to improve these symptoms.

 

[Hip]

@Thinktank mentioned "misphonia" -- a hatred of sound. There is another technical word that may apply to your situation -- "hyperacusis", which is defined as "a health condition characterized by an increased sensitivity to certain frequency and volume ranges of sound". Perhaps this is what you are dealing with.

I think the sound sensitivity / noise sensitivity of ME/CFS is more hyperacusis rather than misophonia. For the difference between the two, see this article.

Basically, with hyperacusis, when it gets severe, it can feel almost as if ordinary sounds are "raping" your mind. Very ordinary sounds (such as a personal talking on their phone, for example, or the sound of a car door closing) seems to penetrate far too deeply into your mind, invading your mind, and entering your own personal inner mental space or your inner mental sanctum.

To those without hyperacusis, perhaps the nearest thing is the effect that the sound of fingernails scrapping on a blackboard can have on you (a YouTube video of this fingernail scrapping sound HERE).

However, unpleasant though that fingernail scrapping sound is, it does not quite capture how mentally "raping" hyperacusis can be. The fingernail scrapping sound sort of makes you feel nervy in your body; but in hyperacusis, the sound seems to penetrate deeply into your mind, invading and taking over your internal mental space. That is my experience of hyperacusis, anyway.



The hyperacusis sound sensitivity of ME/CFS is also found in autism, PTSD, schizophrenia and epilepsy; sometimes it is found in multiple sclerosis.

So clearly this is a well-known symptom that occurs in several conditions of neurological brain dysfunction.



My own hypothesis is that the sound sensitivity problems (and probably visual sensitivity problems too) of ME/CFS may come from poor or dysfunctional P50 sensory gating in the brain. Sensory gating is the brain's filter for incoming information from the senses (such as the ears). See this post for more details of my hypothesis.



Cocktail Party Effect

A good way to see how sensory gating works in everyday life is by the cocktail party effect.

The cocktail party effect is where a (healthy) individual can focus on a particular person talking in a noisy room full of many others talking. The sensory gating mechanism of the brain works to focus on the relevant sounds, and filter out the irrelevant.

The cocktail party effect demonstrates how sensory gating protects the rest of the brain from being overwhelmed and overloaded by lots of irrelevant sensory information. (The sensory gating mechanism, which is located in the brainstem, acts as a filter not just for sound, but for the information coming in from other senses as well.)

Interestingly, quite a few ME/CFS patients seem to have problems focusing on one specific conversation in a loud environment full of other people talking and/or background music: ME/CFS patients can find it difficult to focus on one relevant sound, and mentally filter out the irrelevant sounds.

This would seem to be due to a sensory gating dysfunction in ME/CFS. One study in Japan detected sensory gating issues in ME/CFS patients.



I think that the hyperacusis sound sensitivity of ME/CFS, and the inability some ME/CFS patients to focus on the relevant sounds in a noisy environment, may be two sides of the same coin, and both due to sensory gating dysfunction.

 

[Hip]

At the crack of dawn some knucklehead started up his Harley right outside my motel room and let it idle for 1/2 hour. Too bad no one stole it.

I find the sound of a car or motorbike left idling for 5 or 10 minutes outside on the street can be very unpleasant. It depends on the day, because I find my sound sensitivity varies a lot from day to day; but if it is a bad day, then the sound of a car idling outside my house can be very mentally overwhelming, and I usually move to the back garden side of the house for a while until the car has gone.

A car idling sound is so unpleasantly overwhelming to me that, in my fantasies, I just want to blow the car up with rocket-propelled grenade! Of course, obviously the car owners are not to blame, because no healthy person would feel so "attacked" by a sound. But when you have hyperacusis, everyday sounds can really be disturbing and "attack" the mind.

 

[Old Bones]

I have a pair of cockatiels, who are not really very loud, especially compared to cockatoos and other larger parrots, but I used to have to wear ear plugs in the morning, when the sound sensitivity was at its worse and they were doing their morning calls.]

When my hyperacusis was at its worst, I referred to our neighbourhood as "barking dog hell". On one side were two bloodhounds who were never indoors. They had been purchased to act as a security system when the owners previously lived on an acreage. They howled, from a raised deck, at every stimulus in their environment. There was nowhere in the house (not even the farthest corner of the basement) where I couldn't hear them. On the other side was a Siberian Husky, unhappy at being left alone all day, who barked and howled continuously for up to ten hours a day. My "startle response" was on high-alert, and eventually unrelated noises (eg. the fridge fan) started sounding like a barking dog. Only after the bloodhounds moved away, and I reported the husky's owner to City by-law, did I obtain some relief. But, this took years -- I was far too patient.

At different times in my life I have lived in urban environments, but I could never do that now - the noise would quickly drive me over the edge. . . . . At the crack of dawn some knucklehead started up his Harley right outside my motel room and let it idle for 1/2 hour. Too bad no one stole it. There is a reason why Mainers call people from Massachusetts "Massholes".

During the time period described above, we spent every bit of my husband's vacation time looking, across three provinces, for an acreage property we could afford. We soon realized we would have to be multi-millionaires to be able to purchase a piece of land large enough to insulate me from the "Masshole" behaviours of the "oblivious masses". Fortunately these days, we are surrounded by considerate neighbours. But, every time a "For Sale" sign appears on a nearby property, I realize how vulnerable I am, and fear our current "liveable" situation could change at any moment.

 

[Marco]

My own hypothesis is that the sound sensitivity problems (and probably visual sensitivity problems too) of ME/CFS may come from poor or dysfunctional P50 sensory gating in the brain. Sensory gating is the brain's filter for incoming information from the senses (such as the ears). See this post for more details of my hypothesis.

Hi Hip. Not that I'm disagreeing with you but the P50 component (early pre-conscious response to a stimulus at the approx brainstem level) hasn't really been studied in ME/CFS and I'd like to see it tested with a somatosensory stimulus.

This would seem to be due to a sensory gating dysfunction in ME/CFS. One study in Japan detected sensory gating issues in ME/CFS patients.

This study focused on P300 - much later and may be affected by higher order cognitive attentional processes (although the other autonomic and executive deficits suggest otherwise). Interesting though that sub-groups were found that were either over-responsive or under-responsive to stimuli.

BTW - I'm fine with motorcycle noise - it's kids and footballs that freak me out!

 

[Hip]

Hi Hip. Not that I'm disagreeing with you but the P50 component (early pre-conscious response to a stimulus at the approx brainstem level) hasn't really been studied in ME/CFS and I'd like to see it tested with a somatosensory stimulus.

I have to admit that I am not that clued up on the difference between P50 and P300 sensory gating deficit tests. They are very similar though: the tests involve someone listening to two click sounds, separated by 50 and 300 milliseconds respectively.

In healthy people, the brain response (EEG, etc) is reduced for the second click, because there is an automatic sensory desensitization/filtering mechanism in the brain. But for people with sensory gating problems, the brain response to the second clicking sound is not reduced as it should be.

By what you are saying, the longer timescale of 300 milliseconds would seem to capture the desensitization/filtering responses in higher order processes (in the brain cortexes).



Do you know that you can now buy a very effective EEG device made by NeuroSky for less that $100, that works in conjunction with Mac / PC / Android software. The NeuroSky is mainly aimed at the relaxation/meditation market (you can relax by trying to increase your displayed alpha and theta brain waves); but I understand it is accurate enough for scientific use. Years ago, an EEG machine like this would have cost $thousands.

I have for some time been thinking of getting one of these NeuroSky gadgets to perform some sensory gating tests on myself, and seeing how my results vary according to the ups and downs of my ME/CFS symptoms, PEM, etc.



One thought on the viral connection: given that the sensory gating mechanism is located in the brainstem, it is interesting to note that the vagus nerve terminates in the brainstem. Dr Chia has pointed out that an enterovirus infection of the stomach (which he found in 82% of ME/CFS patients) can travel from stomach to brain in just 3 days along the vagus nerve. I wonder whether the vagus nerve may be enterovirus's port of entry into the brain, through its brainstem terminus, and whether therefore the brainstem may be infected with enterovirus in ME/CFS. If so, it could explain why there seems to be sensory gating mechanism dysfunction inME/CFS.

 

[Wayne]

Take a look at this website/.

I checked out this website, and found the following snippet interesting, since I have a history of head injury, brainstem injury, and Lyme (and more):
-

I"n cases not involving aural trauma to the inner ear, hyperacusis can also be acquired as a result of damage to the brain or the neurological system. In these cases, hyperacusis can be defined as a cerebral processing problem specific to how the brain perceives sound.

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."
​

Here's a longer explanation at the same website:

What Causes Hyperacusis?

"Other causes may include job related noise exposure, drugs, Lyme's disease, Meniere's, Temporomandibular Joint Syndrome (TMJ), head injury, Superior Canal Dehiscence Syndrome (SCDS), postoperative surgery, autism or Down Syndrome."
​

What Can Be Done?

"Many patients have seen improvement in sound tolerance through the use of sound generators (special hearing aids) that emit broad band pink noise. This retraining therapy suggests that the ear will become desensitized to sound by listening to broadband pink noise at barely audible levels for a disciplined period of time each day (usually 2-8 hours a day). This has been proven to help over 90% of hyperacusis patients maximize the tolerances in their ears. The name of this treatment is called Tinnitus (Hyperacusis) Retraining Therapy or TRT. "​

 

[ahmo]

My extreme sensitivities to sound and light were dramatically reduced when I got enough B12. I now find it unpleasant, but no longer have a panic response. I also have had what can probably be called misphonia all my life.

@Hip thanks for NeuroSky. You're right, $100 for this is fantastic. This looks like real brain training. I can't quite determine the differences in their programs. Do you have any experience?

 

[Marco]

I have to admit that I am not that clued up on the difference between P50 and P300 sensory gating deficit tests. They are very similar though: the tests involve someone listening to two click sounds, separated by 50 and 300 milliseconds respectively.

In healthy people, the brain response (EEG, etc) is reduced for the second click, because there is an automatic sensory desensitization/filtering mechanism in the brain. But for people with sensory gating problems, the brain response to the second clicking sound is not reduced as it should be.

By what you are saying, the longer timescale of 300 milliseconds would seem to capture the desensitization/filtering responses in higher order processes (in the brain cortexes).

That's the beauty of these ERP tests that I feel have been underused in ME/CFS. The 50 or 300 figure refers to the time of the brain response sampled after the stimulus and given the known speed of nerve transmission you can roughly estimate where in the central nervous system from the archaic 'reptile' brain to the neo-cortex the problem lies.

 

[Violeta]

It can be a symptom of a dopamine deficiency or dopamine receptor error. You would most likely have other dopamine issues if that were the cause, such as restless leg or a sleep issue.

 

[jimells]

Interestingly, quite a few ME/CFS patients seem to have problems focusing on one specific conversation in a loud environment full of other people talking and/or background music: ME/CFS patients can find it difficult to focus on one relevant sound, and mentally filter out the irrelevant sounds.

I definitely have this problem.

During the time period described above, we spent every bit of my husband's vacation time looking, across three provinces, for an acreage property we could afford. We soon realized we would have to be multi-millionaires to be able to purchase a piece of land large enough to insulate me from the "Masshole" behaviours of the "oblivious masses".

I've made two good decisions in my life. The first was to buy a 50 acre farm on the edge of the North Maine Woods. That was in 1979, and I paid $8000. The second was keeping it when I got divorced in the 90's.

The only way I'm leaving this place is feet first. I have a lot more neighbors than 35 years ago, but they are far enough away that nobody bothers anyone else, most of the time.

 

[cmt12]

Years ago when I would attempt to investigate each individual symptom, like a mechanic trying to fix a car, I got nowhere. I was missing the forest for the trees.

 

[Hip]

@Hip thanks for NeuroSky. You're right, $100 for this is fantastic. This looks like real brain training. I can't quite determine the differences in their programs. Do you have any experience?

25 years ago I attended a weekend meditation course run by the Maxwell Cade organization, using their original Mind Mirror EEG machines, which look a bit antiquated by today's standards, but they worked pretty well. It was fascinating to see one's level of beta, alpha and theta waves varying on the LED light bars in front of you on the Mind Mirror machine, depending on what sort of activity the mind was concentrating on.

As you undoubtedly know, deep levels of Zen mindfulness-type meditation involve high levels of alpha and theta brain waves. The idea is that with a direct visual feedback of the intensity of your alpha and theta brain wave production, you can guide yourself into deeper meditative states.

At the time, those Mind Mirror machines cost well over £1000, beyond my budget in those days. I would have loved to have had a machine like the NeuroSky when I was healthy, and exploring a lot of meditation.

I find it almost impossible to meditate since being hit with ME/CFS, though, so I am not sure if I would find much use for the NeuroSky (apart from using it to explore the ME/CFS brain state).



Anyway, to answer your question: I believe the main NeuroSky products are:

The NeuroSky MindWave $79.99
The NeuroSky MindWave Mobile $99.99

Both products support Mac and Windows, but the Mobile version also supports Android and iOS as well (see comparison chart here). Though looking at the Amazon reviews in the above links, there are quite a few negative reviews, like about Bluetooth not connecting.

There are also other gimmicky versions of NeuroSky products. (The NeuroSky MindSet and MindBand products are discontinued).

You can in addition buy for $499 some researcher's software called NeuroView and NeuroSkyLab that works with these products.



There are also two other brands: the Muse, and the Emotiv.

The Emotiv is more expensive at around $500, or $380 for the cheaper model, and is a wet system (requires saline or electrically conductive gel placed on the skin under the electrodes). The Neurosky products are a dry system. But the Emotiv has 14 channels, and provides more detailed information. If you want access to the raw Emotiv EEG data, you have to pay an additional $330.

 

[ahmo]

Thanks Hip. I'll look more closely through this material.

 

[Rlman]

I find that the sound sensitivity is worse the weaker I am. When I feel stronger it is better. I think it can be related to cortisol levels. People with low cortisol have it I think. Also I read being in prolonged fight/flight stress mode with high adrenaline can cause it.