Sound sensitivity

So now I seem to have some sound sensitivity but I don't know if it is the typical ME/CFS hypersensitivity or not.

I never had sound or light sensitivity before, even when I felt much worse at the beginning of my illness. In the past few years I've been getting worse and worse though and this new sensitivity seems to be a part of that.

This only happens to me when I'm feeling terrible to begin with, it is not present otherwise and it only applies to certain sounds. First I thought it was simply a cognitive issue, that I found it even more difficult to pay attention when someone was talking (it is probably both though). Then I realized it wasn't just that and that there is also some sound sensivity, which has got stronger recently. Now it can be unbearable, it is literally a terrible feeling for my ears, like the sound is hurting them, I definitely feel it is overwhelming. To me this mostly happens when someone has a sharper (or higher) voice, so it mostly applies to people/movies etc.

However, I don't generally get worse from this, although it is also true that I tell people to just stop talking to me when this happens, so I don't experience it for very long.

My question is: is this similar to what others with ME/CFS feel? What I think is that mine may just be starting as I'm getting worse and is not full-blown but I also think that maybe it is just the sort of sensivity you have when you feel terrible anyway and everything is just way more stressful because of that. (However, lately it can be really unbearable so I'm less inclined to believe the latter.)

 

Hi Wyva, I’ve had light and sound sensitivity which started year 2 of my illness. It’s much worse for sharp, loud or high pitched voices (or dogs/ traffic noise / TV). I can’t have a conversation with other people talking in room — I can’t block out the background noise. My family speak quietly or whisper and my relatives who normally shout are asked to speak quietly.

I think it is combination of tinnitus (I have ringing in ears), sound sensitivity and also a brain energy or inability to “gate” information problem. I become overwhelmed and exhausted and cannot process information. This happens not just w loud noises but also w people who talk very fast, interupt sentences and go off on tangents. My brain becomes full and I want to sort of scream “STOP”.

 

Commiserations - it's always a bit depressing to find there's yet another form of garbage ME/CFS is going to throw at you.

I'm not sure typical will show up here - my guess is that these 'sensitivities' get processed through the individual brain in somewhat individual ways. I'd experienced intense light and sound sensitivity when getting Rubella (pre vaccination for boys era) as a kid so when both started to kick in with ME/CFS I had some prior reference. Also I've had tinnitus since a child so I had a head (pun !) start in separating out some of what was going on for me, I wouldn't presume on anyone else's experience:

1. Tinnitus + ME/CFS = an additional challenge to parsing background/foreground sound - a cognitive problem.

2. Total sound sensitivity = as though every sound was turned up to full volume and unbearable.

3. Pitch specific = lower register sounds less intrusive, higher pitch more intrusive with increase in pitch moving quite quickly from bearable to unbearable.

For me 1. + 3. are base problems becoming worse with general symptom worsening or PEM, while 2. occurs when I'm having a bad patch with other symptoms.

I have no idea what any of this means, nor in the case of 2. & 3. could I easily separate cognitive from sensory experience although some of it is pretty damn visceral. Unless I'm really ill, I generally find having a sound source I can control - TV, headphones etc a better option than trying to get total silence -and in any case the tinnitus is a constant companion.

 

So sorry you’re experiencing this. I have no idea whether what you have is typical, or what I have is typical, but here’s my experience and you can judge how it might relate to yours.

I have had noise intolerance/sound sensitivity/hyperacusis since day 0 of the infection that triggered my ME/CFS (viral meningitis). So it’s been a symptom for me through every severity of ME/CFS I’ve experienced (all except very severe).

You said it only happens when you’re feeling terrible. For me, 2 things happen when feeling terrible:

(1) symptoms I don’t even know I have in the background all the time are revealed

(2) sensory overload or a more general cognitive overload or an even more general overload occurs


When I say

(1) symptoms I don’t even know I have in the background all the time are revealed

I mean that because I’ve gotten worse over time, I can look back and realise, ah, I actually had symptom X all the time, it was just so mild that it was only revealed in PEM/extreme circumstances. Even when I seemed to have fully recovered, I still had some noise intolerance, but it was only obvious in situations that were pretty uncomfortable for normal people too. Those situations were unbearable for me, though, not just uncomfortable, and continuing to expose myself meant a rapid drop in cognitive ability.

When I say

(2) sensory overload or a more general cognitive overload or an even more general overload occurs

I mean…a kind of “Too much, stop!” scenario. For example, someone will be talking to me and I just hit a wall and cannot understand what they’re saying any more. And any further attempt to understand or talk or do anything except rest literally hurts and is distressing. Or when I was able to be out in the world, I’d be in an environment where there was a lot of sensory input eg noisy café or something and I just wouldn’t be able to function any more, but would be fine if I went to a quieter, calmer place.

I’m not suggesting that these things are completely separate, far from it, they are really intertwined for me.

Similarly my noise intolerance and cognitive functioning are very closely linked - I simply cannot have a conversation with background noise. Cut out the background noise (by closing door/headphones etc) and I can follow it again.

You describe the actual sound of a particular voice hurting your ears, occurring only or mostly in the context of feeling dreadful. For me, noise intolerance is much worse in PEM, and exposure to certain sounds when in PEM is hellish.

I have not had the experience of a particular voice causing problems, but I do find people who interact in a calmer way much easier to cope with cognitively.

The situation you describe is also a cognitive activity – having a conversation – and I would often hit a wall during a conversation where I need it to stop, completely, right now, because I suddenly feel so awful. (I’m not referring to upsetting conversations, just normal ones when I’ve been talking too long or doing too much generally.) Other symptoms including noise intolerance (but also pain etc) skyrocket during that time and will subside with rest.

When I’m feeling as good as I get, exposure to noise is a good way of plunging myself straight into PEM (first a cognitive kind of PEM, but if the noise is bad enough, it’s a complete crash, including both cognitive and physical symptoms). But when I’m feeling as good as I get, I can also handle more noise to begin with before reaching the point of no return – the threshold is higher, and will only be broken by more extreme noise.

If what you describe was happening to me, it would be a sign that I needed to take it easier. But even when I was very mild, things like this happened every now and again in unusually loud environments, and I was fine afterwards, so it probably depends on how you are more generally.

You say you’re getting worse so maybe you need more rest now? I have less sound sensitivity when I’m less PEM’d, but you’ll just have to play around with it and see what’s true for you.

I seem to have written a long, rambling, unclear post. I'm sure that's what you were looking for!

Wishing you all good things, and nice calm, low voices.

 

This is an important part of it. It's a very real phenomenon, and there can be a cumulative effect. Once our brains have registered that a particular type of sound is really hard on us, they put up defences against it, which depletes our energy even faster, which makes us even more sensitive.

Gating works in other ways too. I can't hear what my friend is saying in the cafe if there's background music playing or someone else is talking, because my autism means I hear both sounds with the same level of priority. I can't ignore a chaffinch calling in the tree outside, because my brain never learns which sounds are potentially threatening and which can be ignored—it goes through the whole process of "What's this? Have I heard it before? Is it a threat? Do I need to do anything?" every time, even if the bird is calling every few seconds. When the gating system doesn't work, either because of extremely low energy or neurological differences, the result is rapid exhaustion.

In some ways, I find the issues caused by autism easier to manage. The annoying chaffinch can be dealt with by simply sticking on my headphones and playing music—I've heard the song hundreds of times before, I know exactly what sound is coming next and when will happen, so I can ignore it. Unlike the unpredictable, unevenly spaced bird calls.

 

Dear Wyva, I hope it gets better for you.

As far as I am concerned, my noise intolerance appeared at the same time as ME. I am hypersensitive to the point that I constantly wear earplugs, day and night (except in the shower !). I even have nude earplugs that are smaller and more discreet (than my neon orange ones !), if I have to go out.

Sometimes this intolerance is so bad that I also have to add noise-canceling headphones... The repeated low-frequency sounds are the worst for me, a real torture because my brain hears them permanently, impossible to concentrate or even to think. It can also be very difficult to protect yourself from them since these sounds pass through walls... As previously highlighted, a kind of sensory overload phenomenon. As if the brain was no longer able to attenuate unimportant stimulations so that we forget them even if they continue, being then incapable of accommodation.

Obviously, this contributes (in addition to my other symptoms) to severely restrict my ability to be in public or be/talk with others. In addition to being " painful ", it exhausts me completely. Me too, resting in silence is the only thing that helps me get back to my base level. And like others, ordinarily, this intolerance worsens in PEM, can sometimes even trigger one. Anyway, reading the previous posts and despite everything, it appears that the experience can vary from pwme to pwme, both in form and in severity.

 

Interesting you should say that: I may not have ME, but I find light sensitivity is usually a precursor to a migraine for me.

 

I think light sensitivity as part of the initial onset of migraine is fairly common but migraine itself is likely pathologically heterogeneous, so in both migraine and ME/CFS the symptom experience may be similar but the route to producing the symptom may vary between sufferers: https://eyewiki.org/Ophthalmologic_Manifestations_of_Migraines

 

(Not really sure where to post this, sorry if it's off topic)

I was half-listening to the BBC 6 Music breakfast show as usual today. Someone who'd called in to suggest a song started talking about his partner who has Long Covid, and how they can't listen to music together the way they used to because she has difficulty processing sounds. It's easier when it's a song she knows well.

I was pleased to hear a bit of awareness-raising for an aspect of LC that doesn't get as much discussion as the fatigue/cough/brainfog stuff.

 

I hadn't realised that people with MS suffer from this, too:

https://www.standard.co.uk/homesand...dons-noise-wars-noise-pollution-b1178594.html