Light sensitivity

[SH3]

Does anyone have issues with light sensitivity? If I am outside in a sun I am fine, looking straight at...like a tv or light I am fine but if there is a noticeable brighter light off to my side..for example I was at my drs and the window shade was lifted and the light coming in was brighter then the light in the room. I find it very distracting, I get lightheaded, eyes cant focus, brain cant focus and just uncomfortable..not painful. I sorta feel maybe..idk..disconnected when this happens. It's very hard to discribe.This has been going on for aboutdescribe. Very annoying.

 

[sweetkamie20]

for example I was at my drs and the window shade was lifted and the light coming in was brighter then the light in the room. I find it very distracting, I get lightheaded, eyes cant focus, brain cant focus and just uncomfortable..not painful. I sorta feel maybe..idk..disconnected when this happens. It's very hard to discribe.This has been going on for aboutdescribe. Very annoying.

Hi, SH3 I have light sensitivity for two/three reasons and they result in 2 different symptom sets.

The first light sensitivity issue is related to overstimulation and absence seizures (and maybe fibro). When my brain gets tired or I have an overactive mind, normal light contrasts and sound contrasts push me to the point where I feel like I'm about to pass out... my seizure medication kicks in and interrupts the pending seizure. If it didn't kick in I would experience "disconnection" during these brief moments. In my case they are actually just "mini" seizures.

People watching and people having them don't often know it is happening. I can even answer questions while I am having 1. Afterward theres a "coming back" moment but it's not startling. It's actually easy to miss because it's so subtle. Not sure how to describe it.

The second reason for my sensitivity is a medication I take for seizures - when I try to shift my view my eyes feel like they vibrate side to side multiple times (like a spasm). This happens ESPECIALLY when I try to focus on horizontal lines (like window blinds). My vision goes into quadruple vision and then returns to normal. My husband takes the same med and it does the same to him. Any psychotropic medication could probably cause this.

Not sure why but, in my case, now I can get fibro flares (symptoms are feeling a fever, sweating, unusual headache) from when I'm overstimulated by light and sound contrasts. Everything seems so connected.

Really frustrating because how much control do we have over light and sound?

 

[ChristaPeanut]

I do. At night we have to turn down the brightness on our tv after dark/before bedtime. Sometimes it can be from a regular light from a lamp. The sun doesn't usually bother me. I get headaches and sometimes have to lay down (if I can). Sometimes I wear a baseball cap to people's houses if I don't know the light situation beforehand, or if I do know it and that it could possible give me a headache. Have to keep our house naturally bright with windows open in the day time. The new LED lights (that are the bright ones) are kind of a nightmare for me.

 

[sweetkamie20]

I do. At night we have to turn down the brightness on our tv after dark/before bedtime. Sometimes it can be from a regular light from a lamp. The sun doesn't usually bother me. I get headaches and sometimes have to lay down (if I can). Sometimes I wear a baseball cap to people's houses if I don't know the light situation beforehand, or if I do know it and that it could possible give me a headache. Have to keep our house naturally bright with windows open in the day time. The new LED lights (that are the bright ones) are kind of a nightmare for me.

Sounds like it's the artificial light that possesses the light spectrum that hurts you. I went through a series of sunglasses to find ones that block the sunlight spectrum I need blocked. Maybe there's artificial light spectrum glasses. They market a lot of them as blue light blockers for TV computers phones...

If you choose to look into those, my advice is to not rule them out if one pair doesn't work. Try several brands if you can, different filters if you can. I had to try on about 20 different glasses to find the best spectrum fit. I suspect it is no different for artificial light blockers.

My eyes thanked me a ton when I got the right ones. They weirdly relaxed. No more squinting to block out light either . You never really think of how your eyes feel until there's an obvious change!

I'm really curious to know if you ever do find something that works for you! Keep me posted if you want

 

[Badger]

I've fitted 'warm white' LED lights to help make things more comfortable. TVs on the right picture mode will be D65 white light/midday sunlight which is natural. It's a good idea a having lights on / daytime TV mode and lights off / evening mode. Works well for me and avoids eye strain. Shifts in brightness can take you by surprise and be a trigger. The blue light filter shades for evenings sound interesting, a warmer white balance might help you to settle.

 

[JayCS]

blue light blockers

blue light filter shades for evenings sound interesting, a warmer white balance might help you to settle.

It took me a long time to realize that some gadgets (mac) have a "night shift mode" that does that, which I switch on fairly early, quite a few hours before bedtime.
Also browsers may have settings or themes or add-ons for a dark mode. Although I prefer just darkening the screens.
I have one room without curtains, so a lot of light, and one with blackout blinds, which now in the summer I often sit in with them pretty much or half down.
I can't really say how I "react", maybe I'll now try to describe it. I know light is good for the senses and mood, and sun good for D3. But when I feel "dimmed down", first or last hours of a day, I just prefer it dark some of the time, or alternate. My eyes and head ache a bit, same as if talking/listening then.

 

[ChristaPeanut]

If you choose to look into those, my advice is to not rule them out if one pair doesn't work. Try several brands if you can, different filters if you can. I had to try on about 20 different glasses to find the best spectrum fit. I suspect it is no different for artificial light blockers.

Thanks! I have thought about it but got overwhelmed when I read people's responses to them online! My friend has a pair that he wears to our game night at a friends house (we both have trouble with the light there; he's got chronic migraines, and I get really bad tension headaches). Sometimes when i have bad headaches any light will affect me. We have to close all the curtains/shades in the house. Thanks for the advice. I will let you know!

 

[Badger]

It took me a long time to realize that some gadgets (mac) have a "night shift mode" that does that, which I switch on fairly early, quite a few hours before bedtime.
Also browsers may have settings or themes or add-ons for a dark mode. Although I prefer just darkening the screens.
I have one room without curtains, so a lot of light, and one with blackout blinds, which now in the summer I often sit in with them pretty much or half down.
I can't really say how I "react", maybe I'll now try to describe it. I know light is good for the senses and mood, and sun good for D3. But when I feel "dimmed down", first or last hours of a day, I just prefer it dark some of the time, or alternate. My eyes and head ache a bit, same as if talking/listening then.

Those night shift modes really help, I've left my mobile on dark mode. Blackout curtains come in in handy, our sun room has them and blinds to restrict the light to a comfortable level. It doubles as my evening home cine room.

 

[sweetkamie20]

Right there with you! Dim the brightness on the screens, wear sunglasses everywhere I can, keep the lights off a lot, and one day hope to tint my car windows.

 

[cookiebaker]

light sensitive here, too... any bright light strains the eyes, and often results in headaches... i tend to keep the house fairly dark (i am a mushroom, i like the dark! lol) Outside, sunglasses are a MUST, even on overcast days...
I do tend to go for a dark mode in forums and such, if it is available. (dont suppose there is one here?)

 

[JayCS]

I do tend to go for a dark mode in forums and such, if it is available. (dont suppose there is one here?)

No, but have you considered turning your browser to a dark mode, or using an add-on for that?
(Just checked in Profile: Preferences: no. But I changed some alert settings in the process.)

i tend to keep the house fairly dark (i am a mushroom, i like the dark! lol)

I was just gonna say that might account for a few fun things here (in the pub subforum) too...

 

[cookiebaker]

No, but have you considered turning your browser to a dark mode

my browser is set to dark mode, but it has no effect in this forum (or a few others i frequent)

hmmm... pub thread? might have to check that one out! LOL
Not much of a drinker, but I do know how to have a little fun

 

[JayCS]

Not much of a drinker, but I do know how to have a little fun

Same here! Edit: Good thing is we can eat and drink all we want there, @Auriel's , my ...

 

[SH3]

Thanks for everyone's input.
I went to the eye doctor because it was seriously annoying. She said I am straining my eyes because I need glasses... :-( I didn't feel like I needed glasses but when she did the test and showed me before and after vision through glasses I was floored. Its not a huge prescription but enough to cause my eyes to be strained. Is sudden eyesight change a Fibro thing? I still have so much to learn.

 

[JayCS]

Is sudden eyesight change a Fibro thing? I still have so much to learn.

Yeah, I'd say so, but usually more sudden and more temporary or rather fluctuating than you've described it.
My impression is that it's like everywhere in the body the eye muscles that are having problems.
So I'm wondering if yours may also fluctuate... praps my ongoing experiences with that can help you compare and my ideas how to improve it again also:

As I read and write (incl. making music when I can) all day my eyes should be pretty taxed. But sometimes I can see brilliantly, sometimes have comparatively great difficulties. Admittedly often worse in the evenings, maybe increased by low light or night mode on my screen, but not necessarily and independently how much I was reading/writing. And best after eyes closed. I used to praise my physical therapy, osteopathy and acupressure for that effect, but now I've realized I can do it all on my own - just close eyes for a longer time.
This brings me on to a different cause, same times: Dry eyes are of course better when we've had our eyes closed. That's praps something we can exercise without artificial supplement of drops: When they are very dry I rub my hands to warm them, then cup them over my eyes. After that I do a gentle Gua Sha massage using a jam lid above and below the eyes. Once again something I learnt in a youtube video... (As with all remedies I prefer stimulation to substitution or suppression.)

I know since my teens I was fascinated of praps being able to improve eyesight with eye exercises. I then gave up explicitly doing them when I read that there's not much proof for this. But had to wear my glasses less and less anyway, haven't worn any for over 10 years. But I think I do eye exercises without realizing. Just thinking about it, I quickly cleared my vision just by switching my focus from screen to points 2, 3, 5 metres away. And also a quick youtube search shows me that that there are loads of ideas, but this one of my is probably long learnt.
These eye exercises may be perfect for you/us, quite like all other fibro exercises. A video on the "Be Inspired" channel by the neurologist Andrew (D.) Huberman from Stanford Uni struck me, interesting reliable information put in a clear way.
Main suggestion is the same as I do it, but ideally opening a window or going outside for the relaxing the eye muscles by looking in the distance and also by the panorama vision. Interesting aside that windows take upt to 50% of the blue light out of the sunlight, which we need in the daytime. Another reason. If it weren't so hot I'd now quickly run outside...