Things that help with very severe light & noise sensitivity

Hi,

Over the past couple of years I’ve found some things that help my sound and light sensitivity significantly (at home especially). I just thought I’d post them, and wondering if anyone else has other things that helped them a lot. I haven’t seen a thread for aids that help with light sensitivity so thought I’ll start a new one.

Light sensitivity

- blackout curtains. If people don’t have blackout curtains, there are blackout blinds from Amazon - they go up to huge sizes and can be stuck on.

-dark migraine glasses. I love these as they go over glasses:


I also have yellow coloured light blocking glasses, not as dark but they block out blue light I think. I don’t really use them much since my light sensitivity became too severe because I need the dark green ones more, but if sensitivity is less severe they might help!

-light blocking eye mask. https://sleepsmug.com/collections/contoured-eyelash-friendly-sleep-masks
I’ve tried a few and these are the best I’ve found. Really soft, contoured so they cover the whole eye and also light doesn’t get in through the nose area. Basically (near) complete light blocking protection and (near) complete darkness.

-lamps in my room that *do not* face me and can be twisted 360 degrees. This means when the light is turned on, the light disperses around the room but never goes directly into my eyes or hurts me to anywhere near the extent it usually would. The one I currently have is this, it has 3 light settings (first one is dimmest), it’s also portable so can be taken eg to Hospital:
https://smile.amazon.co.uk/gp/aw/d/B08SBZVCQ5?psc=1&ref=ppx_pop_mob_b_asin_title

I’ve also ordered another one with different light settings so will post that if it’s good, as I’m looking for a dimmer one. This is how I’m able to, at times, have lights on for a short time (often paired with migraine glasses). If I didn’t have these lamps, I would never be able to have any light at all as I cannot cope with overhead lights, ceiling lights, normal table lamps etc. Before this, I also had a dim elephant night light. I’m interested what lights others use?

- setting screens and websites to dark mode, reducing brightness down

Noise cancelling

I have the fan on (ie like white noise) in my room a lot, this helps because then random noises, someone coming into my room and opening lids, washing machine, cars going outside etc doesn’t sound as loud as it otherwise would. Only certain fans work - some are too loud. I would still like to be able to not have the fan on, but my flat is still too noisy (for me), to be able to turn it off completely. I’m looking for a white noise machine which might be better than a fan.

Can’t currently cope with ear plugs that go far in the ear canal as it’s too painful, so I use:

-QuietOn noise cancelling ear buds for night time and during the day if needed. Can’t play audiobooks on these. they are more comfortable to sleep in. Note QuietOn 3 are now out (on Kickstarter), which are apparently much more comfortable to sleep with especially for side sleepers, and apparently they don’t touch the pillow. I have the older version currently, they do get rid of some background noise for me, eg droning or repetitive sounds.

-OR I use my Bose noise cancelling in ear headphones (some people prefer Bose noise cancelling over ear headphones)

If leaving the house (or if upstairs neighbour starts playing music, or if someone on road below plays loud music, or if Hoover is on at home etc), I *always* pair the Quieton / Bose in ear headphones, with Over ear earmuff defenders, I use these ones 3M peltor comfort: https://smile.amazon.co.uk/gp/aw/d/B00EJIN6M8?psc=1&ref=ppx_pop_mob_b_asin_title

I found these ones to be the softest that I’ve tried, they do put pressure on but the amount they block out noise is a lot. I found they blocked out a lot more (and different types of) noise than the Bose noise cancelling over ear defenders. Having said this, I still cannot tolerate more than a few minutes in a sensorily busy environment eg a hospital environment even with all these gadgets!

But without these, I wouldn’t be able to cope outside the home at all, and also wouldn’t be able to cope inside the home either. I hope some of these might help someone else too!

 

Interesting. I had prescription green glasses for my dyslexia/Irlen Syndrome since the mid 90's (I first got them as a mature student at university). The last pair I had made are now very worn and scratched. I'm now trying to find a local optician who will do the old-fashioned light box type colourimetry (as opposed to the computer version), but had never heard of 'migraine glasses'. They might work as a cheap interim solution.

My green glasses dramatically reduced my headaches, I couldn't drive without them. They don't make things appear green, the sky is still clear and blue to me in strong sunlight.

 

This is what we use on my bedroom window, it's excellent:



Then we have this up on the window in the bathroom - there will be light coming through at the edges, but that's okay because I'm only in the bathroom temporarily:



At the bottom of my bedroom door we place a draft excluder cushion to prevent light coming through at the bottom.

And here we have a thread about ways to block out light around the top and sides of a door:

https://s4me.info/threads/sarahs-adventures-in-blocking-out-light.20271/

This is my lamp which I've had for 3.5 years and is excellent. Dimmable light and it goes pretty bloody dim (although the maximum dimness varies a bit depending on how recently it has been recharged). Can choose between white and yellow light (I prefer white as yellow is overstimulating). The head of the lamp is positionable to where you want it. Battery-rechargeable and portable.

https://www.lepro.co.uk/5w-adjustable-desk-lamp-3100028.html

If I have to leave the house for an appointment, I always take a black T-shirt with me, which I can quickly use to cover my eyes if i'm getting overstimulated.

Twilight app for my Android phone allows me to turn the brightness down way below what the phone's settings will allow me to. If your phone/tablet is Apple then you can achieve same thing by using the "reduce white point" setting in the accessibility settings.

Putting my phone and tablet into grayscale mode is essential for me. On Apple you can do this via the accessibility settings. On Android, how to activate this depends on which version of Android your device is running (check this by going to 'about device' in the settings). Google how to activate grayscale mode on your particular version of Android.

 

@Sarah94 there’s also this blackout blind that we have: easynight blackout blind (without suction cups) (XXL 3m x 1.45m)


it’s the biggest one we’ve found or if people have multiple windows, you can cut them to size.

My lamp has similar settings, warm / white light too, although I’m the opposite and find the yellow light better as I find the normal white light too stimulating!

@Simbindi the migraine glasses are very dark green (people can’t see my eyes through it if I’ve got them on), and in a dim light I can’t really see much! So they’re not good for doing tasks if your lighting is dim, but they do help a lot for headaches / light sensitivity. You would be able to see what you’re doing in a brighter light though, and again still helps for light sensitivity, but they definitely tint everything green for me. So I think possibly quite different to the glasses you had before, although very helpful.

 

Mine are very dark green. These look a slightly different shade of green, actually identical to the colour of green glasses that my eldest daughter was prescribed when she was about 10 (but never really wanted to use). I think Irlen Syndrome must be caused by the physiology of the eye-brain, that is, something to do with how an individual processes certain wavelengths of light. It seems to me to be something different to dyslexia itself. I would love it if the condition were to be researched by competent scientists.

 

So it turns out the lamp that I recently got which I wrote about above, isn’t actually good. I thought it was dim; it turns out it was only dim because the power was running out and it wasn’t connected to the mains.

Once the battery got recharged again, it was too bright for me. so I’m back to my pink elephant night light (which doesn’t have a rotating head, but on its dimmest setting it’s very dim so it’s fine). my other slightly brighter lamp (which does have a rotating head) which I use if I need to see things - is kind of broken, which is why I got this Amazon one, but never mind it didn’t work out. I often find I need very specific types of items so things often don’t work out for me!

 

Might be of interest: https://www.s4me.info/threads/noise-reduction-acoustic-vents.37011/

 

I'm trying to figure out if what I have is the typical "light sensitivity" of ME/CFS.

For a couple years at least, I have light sensitivity in that it's almost painful to my eyes to be outside on a bright day. I have to constantly be squinting. Like what you'd expect if you were looking almost directly at the sun, but I can be looking the complete opposite direction or looking at my phone on a sunny day and I have to squint.

Around the same time I started having night blindness where my eyes don't adjust nearly as well as they used to in the dark, so everything is harder to make out at night than it used to be. So I think these are related.

I don't really know what it is people describe with ME/CFS-light sensitivity, but it seems like something different. For me, the pain and effects are entirely localized to my eyes and don't cause significant PEM as far as I can tell.

I went to the eye doctor and he said my eyes look healthy apart from astigmatism.

 

@forestglip I have the same thing - and the same results from the ophtalmologist. I also developed Visual Snow recently.

 

Night blindness too? I've never seen anyone else with ME/CFS mention that.

 

Would you still recommend these as of now? Are there any better alternatives?

 

Poor night vision is a part of Visual Snow (VS), I did not have it before I got VS.

 

I developed what looks like it matches the wikipedia definition of visual snow almost exactly ever since I had to spend a month functionally blind due to a severe crash.

Of course I don’t have a confirmation because I can’t see ophthalmologists.

 

Oh I see, I should have clicked the link you sent where that person also says they have low night vision. I don't think I have visual snow though.

I kind of hope what I have is a downstream effect of something else or something with the brain, and not structural changes of the eye even though that's what it feels like. It feels kind of like my eyes are letting too much light in. Structural eye changes seem like they'd be much more difficult to reverse. (Upstream causes might be irreversible too but also maybe not depending on what it is.)

Gotta say, vision is one of my favorite things, and I want my eyes to work well for the long haul.

 

Same for me, in combination with sleeping less than 2 hrs, sometimes none at all.

 

Visual Snow is thought to be neruological. It has only gotten some attention recently because it was long thought to be a part of migraine auras.

I believe some studies have found increased activity in the visual processing areas of the brain. I don’t know what it means or if it’s significant. Some suggest that the ‘filter’ for noise is kind of broken.

VS feels like something is wrong with your eyes. But it’s not. So I understand your worry! I was lucky to be able to get it checked out with only some relatively minor PEM afterwards.

 

I struggle with contrast most so for example don’t watch tv in a dimmed or dark room , whilst many well people enjoy that for a film (although it makes me think pace / movement in mentioning that as watching films is too much, and anything fast or too HD and deffo not 3D type things)

strangely I feel like I lose my balance more in the dark and don’t do pitch black at all to really test the night vision

but I can get what you’ve described on bright days and am careful with or feel impact of overhead (or lamp/other types of) lights that are too much

I don’t know which of the above fall into or are anything to do with light sensitivity. When I get a migraine I have full on putting the nearest towel or dark jumper over my head for extra dark sensitivity, so I assumed it’s ‘that’

I also have days where I have to wear sunglasses ie different grades - but are these the same thing?

 

I don’t use these anymore. I think I remember I used them in hospital and they really helped me a lot, but they are a bit uncomfortable when sleeping on your side with them. I did get the Quieton 3 (or 2?) which were better for side sleepers but still weren’t too comfortable. I think they also stopped working at some point and I didn’t replace them.

At home, I don’t really need as much noise cancelling at night, so I don’t use any active noise cancelling devices at night anymore. I use the Loop dream which I find helpful, they’re just foam type earplugs but have an oval shape, I find them comfortable (more comfortable than the Quieton).