Sensory sensitivities: research and theories?

I think it may also be true when comparing ME sensory sensitivity to autistic sensory issues. I was thinking about it at an event last night, where the music was exhilarating even though I already had PEM when I arrived.

I had problems with sound from early childhood, long before ME, but it's usually when I have no control over the source. It's okay if I can make it stop the moment the exhaustion sets in. Familiarity too: if I know what's coming next, e.g. listening to a record, I don't have to pay the same level of attention to it. And sound balance is important because some pitches are more bearable than others.

I have to wear ear plugs when I'm playing a high pitched whistle, but stick it in the middle of the racket made by fiddles, flutes, accordions, harps, concertinas, mandolins and bodhràns, and it's fine. Being in that environment is doable because I know all the music, and if I run out of sound tolerance capacity I can just leave. I've spoken to other high functioning autistic people, and their experience seems comparable even if the context is different.

It doesn't sound much like the noise sensitivity in severe ME, though. Maybe in some respects, e.g. tolerance being energy-dependent, but does familiarity significantly reduce the energy demand? Is one pitch so challenging on its own that it gobbles up energy, but only consumes a fraction of that when blended with the equivalent pitch an octave lower? Can you help yourself cope by covering up nerve-shredding external noise with other noise?

The sensitivity in high functioning autism seems to be an over-wound version of normal, but from people's descriptions, it doesn't seem as if severe ME necessarily compares. Even with the insight from having ME myself, I might be guilty of thinking I understand when maybe I don't. We need to be careful about using comparisons, as they'll be even more misleading to unsympathetic clinicians who don't really have any insight.

 

No, absolutely not. It just adds sound. And in fact the more complex a sound is the worse the effect. So 3x low volume pleasant sounds all happening at once drains the battery faster than one louder unpleasant one.

Its sound itself for me, not the type, I mean sure some types of sound do hurt more, i think although it seems like this is to do with resonance perhaps? Echo? So i can tolerate much louder & more complex sound outdoors, than i can in a room with lots of bounce back off the walls & ceiling

- So someone talking loudly outside is infinitely less painful and battery braining than it would be in, say a supermarket, or a hospital ward with zero carpets/furnishings to dampen it. Oh my, the thought of that makes my whole body hurt.
The 'tinny' sounds of a cymbal that go on, are worse than a drum for example, unless the bass drum is loud/low enough to make it register in my chest. Worst ever is a bass guitar or keyboard playing low sounds with the 'repeater' pedals engaged (think thats what theyre called when they extend the note, if not, you know what i mean) Or perhaps its called reverb? i dont know. Oh my that is torture when every note carries on while the next note is played i feel sick just thinking about it.

However the issue isnt with the sound being 'nerve shredding' per se, its the same effect with wonderful, beautiful, favourite sound. Some sounds are nerve shredding though, of course for everyone there are sounds that one hates - eg fingernails down a blackboard or, ugh, balloons! Organ music! And so i imagine the drain on the battery is slightly more because there is an emotional component especially if its someone else inflicting it.

I have always had problems (pre ME - since childhood) with not being able to tune out irrelevant sound - like background music etc, & inability to concentrate unless in silence, but that manifested in ways such as having to turn the radio off when driving in areas i dont know or on large busy roundabouts for example. Or finding it utterly exhausting having to listen to music i hated in the shop where i once worked i noticed id feel massively less stressed & fatigued after a day where the boss was out & i got to decide which & how much music was played. I'd often just turn it off.

I'd get veerrryy stressed & wound up if i had to perform a really tricky task like cashing up (pre computers) the till, while there was music on that i hated & could not tune out. But thats about not being able to concentrate because of distraction - it'd be just the same if someone was talking to me.

Now its utterly impossible to concentrate while there is any sensory input at all, even my favourite things

But this is all not to be taken for sure as being neuro-typical though, since a few people in my life think i am autistic. (2 ASD people themselves and an ex occupational therapist think i am high masking, but thats another story).

but regardless, the thing is that pre ME i found it hard to cope with unwanted sound, especially if i had no control over it, but that was about stress levels, anguish, irritation, yes fatigue but only because i found it stressful & upsetting trying to go about my business with the constant din everywhere.

But this phenomena that i call sensory difficulties/sensitivity due to the ME is not that (well i still have that, but this is different from that).

I've lost count of the times i have become exasperated by someone suggesting i cover the sound of the neighbour's hot tub heater humming, with the sound of 'a lovely water feature', because they simply cant seem to grasp, no matter how many times i tell them, that it would only make it worse, because then it would be 2 sounds, instead of only 1. (The fact that i dont especially like the sound of the tub is entirely secondary & incidental.)

Not really no. Not like how reading something you've read before is less demanding because you dont have to learn the characters, music doesnt require me to remember anything about what went before like understanding a paragraph does.

I dont know, im not a musician so i dont even really understand the question. If you mean does for example a high pitched violin become less problematic when combined with an orchestra? If so... then heck no! The more instruments = the more sound, which is 99/100 worse, the more complex the sounds the worse it is.

For example - my favourite sound = blackbird or song thrush.

worst bird song ever = cockatiel screeching.

4 blackbirds singing at once (they dont do that but hypothetically) would be worse, hurt more, make me more ill, than 1 x cockatiel.

4 cockatiels are worse than 4 blackbirds, but only because of the added extra energy demand of having to psychologically tolerate the hideous nerve shredding aspect of it. So its impact on my ME, the pain it causes would be the same, but it would lead to PEM faster because i would be spending energy emotionally as i shuddered. There is no way you could make it less of a problem by mixing it with other sounds - 4 cockatiels + 6 blackbirds to 'drown it out' would be even worse still.

 

Sorry i hope i not hogging this thread, i'm just one person, others' experiences are different i know. I'm not under the impressionthat i'm the arbiter, or in any way the authority on it. I can only tell my own story. Its just that, even with every other symptom being the same, if this particular symptom would go away, my life would be utterly transformed.

It is the most isolating and life limiting symptom i have, because it controls what i can do, where i can go, even when i am at my best. Life would open up hugely if it went away, and losing the torture of other people being able to cause me agony & control how much activity i am able to do because they're busy draining the battery & putting me into PEM just by behaving in perfectly normal reasonable ways, is the stuff dreams, fantasies, are made of.

And the thought of ending up in a hospital ward, is the stuff of actual nightmares

 

Me too, and on a good day I'm fine with live music, football crowds, etc. You can just leave when you've run out of capacity to cope, but not in a hospital. You've no control, and any attempt to gain some is guaranteed to make it worse just from the stress of having to ask. I can't even bear to think about it.

 

I cant imagine what it must be like for those in that situation now

Its the way that too much sound makes me unable to communicate that's the scariest for me - i mean past a certain level it seems to scramble all the signals in my brain so i cant move, and i cant comprehend whats being said - i can hear them speaking, but its just gibberish, like a foreign language.

I cant even work out what i need by that point, it is such a screaming world of pain and other symptoms ramped up to the nth degree, and i so cognitively impaired that it takes someone who does know, to actually do it for me - like closing the blackout blinds or putting my noise cancellers on. (i usually weep with relief when someone who knows does this.)
But i definitely cant speak to ask for it once i in that state, even if i were to know what i need.

The adrenaline/stress hormones from the fear would i imagine double or treble my tolerance in terms of the length of time i could tolerate it for before total incapacity, but judging by experience on your average busy hospital ward, that takes me to approximately 9.30am on day 1, assuming i had noise cancelling earbods plus ear defenders on top and a pitch black eye mask.

God only knows what trauma those people like Meave, Millie etc been/going through. Its a horror movie.

I honestly think it'll be in a horror movie one day. If humanity makes it to the 22nd Century, this will be the stuff. Never mind spooky houses & all that.

 

I’m trying to have a think as mine definitely varies with something like exhaustion, and vice versa causes it but I feel like I’m not fully putting my finger on that when I reach to cite the usual PEM or fatiguability type things

divided attention is the worst and for example if on a call and someone has tv in background or in a car and someone had radio even on low but then there’s the movement of car and then someone talking it’s just that noise droning and draining into me

I had lots of building work nearby for many years and that’s the kicker other don’t realise when you combine all these.

firstly the sound itself exhausts (doesn’t feel like right word as there’s more to it) and I’m in a PEM like state even tho it’s not delayed and at that point the sensibility is worse and really whole body. But adding in something to cover it up eg tv or music , particularly at that.point, is just creating the further drain on executive function it feels because it’s two sounds from two different locations. Even when for healthy people you know they’d be able to drown that other sound out ‘enough’

these days I have to have my tv on low and take breaks from it as needed and am just used to doing that because it’s instinctive when my brain is getting hurrty. I can’t have it on whilst doing anything else like reading I think all the time, even though when I was moderate I needed something low in the background almost to concentrate on my work when at home and when I was younger that might have been louder stuff and even bith tv and music to make it more like white noise to stop me getting distracted if it was silent by every car noise or person walking making me curious etc.

I can rarely enjoy music now. Maybe a few times a year I’ve had a cd in a car and it came on and I could enjoy a few tracks or sane if there was music on tv but normally there is a limit even when that’s being coinciding with a good day and a good moment in it.

It’s better not having building noise issues right now because when eg there is music from afar that’s not too loud it might be ok if it catches me not exhausted already if it’s not too loud and doesn’t get too repetitive or funny pitched. So there’s definitely a connection with getting enough silence and time in control of sound so I’ve not been over-sounded in previous weeks or days when that happens. I guess therefore there is a cumulative effect because it wouldn’t just be about one noisy day before etc.

when it comes to droning type sounds I can almost feel my face and forehead ‘droop’ in pain

It’s generally not being over wound but exhausted and if it stops I have like full head tinnitus

so I guess mine is less about hyper sensitivity in the sense many understand but how much it impacts me and it being almost exponentially cumulative vs already being ill and the circle involved with that.

sound quality eg in a tv or speaker has always whatever severity made a massive difference to me. Tinny anything goes right through my head and almost hurts my bones. The same is true but it’s different of -if you know it you know- whatever THAT electric metal saw thing is that so many building sites and renovations have and feels like it goes on for hours and that just makes me feel desperate as it makes me feel so ill so quickly particularly where there is no distance or no door / window closed so it’s the full sound. The jackhammer and Kangol aren’t far off but don’t go right through my eyes and body as quickly.

anyway once I’m there then it’s basically like having a migraine except my body is also crumbling with exhaustion even just from eg birdsong now

I sort of don’t know how I survived the continued onslaught I had for so long and I think when I was in it I felt my health being with so fast from me I could feel what is was doing and where it was heading wasn’t going to end well because my body just couldn’t recover ever from any of it before more started.

so I guess mine is more about the sheer impact of it , normally starting with noise or sound I can’t switch off when too exerted sensorily. It just crumbles my body in a way like you feel when you’ve had too sit in a chair for too long in a waiting room and don’t know if you are going to make it to whenever that appointment comes when it is running late type thing.

 

I can relate well to most of that @bobbler.

Lately I've been able to get through kitchen tasks more easily by having just audible, relaxing piano music playing. I can barely hear it but it actually calms me a lot then after about 15 minutes I suddenly realize I can't take any more of it. It has surprised me that I can listen to it at all because I haven't been able to listen to music just for pleasure for years. Like any noise - TV, films, radio, outside noise etc. - my nerves become incredibly jangled and I feel shocking. Eventually I crack and have to do something.

However, I've never had any trouble teaching the violin from the sound perspective despite it being more like noise a lot of the time. I've decided that it's because I'm listening and watching extremely critically to the technical aspects going on as they relate to the end result rather than just focusing on the end result, so I'm not emotionally invested in the music - well maybe in the quietly tearing my hair out way, but that's different.

So my theory is that sounds, and smells too, are intolerable for me if I experience them emotionally rather than intellectually, if that's the right word.

 

oh... yes... sound quality... OMG a smartphone's loud speaker function, the weird tinny distortion, oh man it is so hideous, unbearable.

yeah... i certainly do know it... its called an angle grinder.

 

Yes, I think that's crucial. Tolerance depends on energy, and emotion burns through so much more of it.

I find it hard to explain why playing music is so different to listening to it. Even if my instrument's contributing 10% or less of the overall din, all the sounds being made seem to be internal, not external. Somehow I don't need nearly as much cognitive energy, even though playing from memory's hugely demanding. When I'm listening to recordings I run out of energy very abruptly, and the sound has to stop now.

I'm a bit like @JemPD for that. It makes me unable to think, because I can't stop paying as much attention to it as I would to a crouching leopard 30 metres away. On a good day, my inability to put three words together is funny; on a bad day it's the start of a meltdown. Luckily friends know about it and never expect me to hold conversations in cafes where they have music on.

Ugh! I used to buy stupidly expensive hi-fi even when I had no money, because otherwise I couldn't listen to music. I've always needed it to get through.

But unlike you, I've been known to put on loud rock music to drown out the noise of a clock ticking. It's another autistic thing; light touch on my skin makes me want to punch whoever's doing it, but rub sandpaper on it and I'm good (if a bit puzzled). Big loud noises can be much less unbearable than little tickly ones.

 

I think i did that kind of thing when i was well (pre-ME). Something much louder to drown out sound that was irritating.
But not now

 

I think it's because a great deal of mental work has to go on in the physical attempt to reflect the emotions being imagined or anticipated, and to fit in with a group as well. A performer can determine how they want to express their feelings - the exact opposite of a listener who can only react. As a listener, I feel as though I'm being bounced around and eventually it's all out of control. Just an idea.....

 

You're right, there is something in that. But the opposite's also true—you have to disengage most of your thinking brain when you're playing, because there's no time to process stuff. Music happens in such a different headspace that maybe those cognitive muscles aren't as fatigued as the ones we've already worn out doing everything else.

There's also that peculiarity where being in a rhythm somehow consumes much less energy than sporadic effort. I always feel as if I'm being driven by the beat, not that I'm driving it.

Exactly that!

 

I've been thinking about exactly that today and also wondering how there's time to process everything in split seconds. It feels automatic when you're doing it and I suppose years of repetition have created cognitive shorthand, and there's muscle memory too.
It could also be much quicker and easier to do without becoming easily fatigued because words aren't necessary either so, as you said, maybe it all happens in a different headspace.
A quick google search turns up a lot about the effect of music on the brain but I can't find anything so far about this topic.

 

I think it's done somewhere partitioned off from intellect. None of us would learn to walk or speak if we had to think through each stage of the action all the time we're doing it. One of the reasons learning an instrument is so hard—as I've been reminded after coming back to it after several decades!—is that writing movement into that form of memory takes a long time and there are no shortcuts.

The next hurdle is accessing the flow-like state when playing, where you switch off all the thinking, the anxieties, the ego, the distractions. You have to trust your ability to step off the branch and fly, because playing even the simplest music fluently is impossible without that belief.

Maybe the deep automation and lack of intellectual effort are partly why it seems less energy-hungry than listening. It's physically tiring—I'm blowing into a leaky pipe hard enough to make me sweat on a warm day—but having your body make music doesn't seem to act on cognitive capacity and sensory tolerance in the same way as hearing it.

 

I can certainly relate to switching off like this. Performing solo in an exam or a concert requires trusting that you've done enough preparation so you can stop being analytical. I've done this more times than I can remember and I have never been able to recall a single detail afterwards, (excluding the inevitable mistake which sticks in my memory like glue) so I can't say I got anything immediately satisfying out of it. Must be blind panic I suppose yet it still doesn't consume lots of energy.

Playing for myself is far more rewarding. However, I'm always extremely alert, thinking and planning (pre-verbally) at the same time as I'm enjoying it. Part of the fun for me is working out how to do it physically so it aligns better with my emotional intent, rather like a fun puzzle. It's still not energy-draining and is far more emotionally satisfying.

Edit: after a midday sleep I've changed details here and there and now I'm going to shut up

 

IF it is allodynia or hyperalgesia...

even then, exposure therapy is only recommended to be applied "as the patient tolerates" (and works best when it is "without a large underlying medical component")

So ripping the curtains open doesn't comply with exposure therapy (for allodynia or hyperalgesia) anyway.

edit: forgot the link