Visual sensitivity only when upright or due to OI

[Husband of]

Probably the worst ongoing symptom I have had since getting Covid has been visual sensitivity.
This includes sensitivity to different levels of brightness within my field of vision, sensitivity to blue light, sensitivity to glare, to looking at a screen while reading, to straining my vision, etc. Usually the result is motion sickness, headaches.
I often, even before getting Covid, get lightheaded when I stand up and have to fall to the floor to prevent fainting. I tend to close my eyes when this happens so kind of forgot that my vision goes blurry at these times. Yesterday I didn't close my eyes and noticed everything became a blur. Which made me wonder.
Are the visual processing issues a result of not enough blood to the brain? After all, I do feel a bit dizzy and light-headed all the time these days. At least when sitting or standing.

So I tested it.
I tilted my device's screen back and forth to mak glare move across it. This made me feel sick to look at it.
I then put my head below the rest of my body and repeated the exercise. I did not feel sick.

Then today, having never considered my issues may be OI based, I tried drinking a lot of water and electrolytes after I started feeling sick, and taking some Ginkgo Biloba to help increase blood flow to my brain.
I felt a lot better. Almost good even.
So I decided to See how I could handle glare moving across my screen, and blue light. Pretty well.

I will keep experimenting but thought I should share in case It helps someone else or if anyone else has experienced similar thing.

 

[kushami]

Excellent experimenting!

 

[linusbert]

i wanted to say, but you figured it out.
This orthostatic intolerances could be due to blood flow not optimal for the brain, usually this would resolve within minutes even when standing.
One way to address this is increase blood volume, means drinking a lot more water, if you are below 2 Liters its too less for sure if your body is sensible like this, try 3 liters a day of plain water. you might mix it with electrolytes. sodium increases water retention thus volume thus blood pressure.
so water + sodium should do the trick.

but there is another possibility, your nervous system not working optimal, this can maybe be treated with thiamin (b1) as this is important for autonomous system. and pots is a symptom of this.

maybe strengthening your adrenals might help as well, you can do so with
vitamin C, B5, Sodium.

also remember to keep the balance between sodium and potassium. those work in tandem.

another thing you can do, change your display/tv to red color tones. you can manually calibrate every tv.
i set mine to 150% red, 100% green, 50% blue.
and brightness to 50%.
careful, some tvs have invisible flickering due to PWM. usually its with lower brightness levels. mine has flickering somewhere below 25% , so i set my brightness above that.
flickering causes strain on your eyes and brain.

also check your lightning in your house that those are not flickering. even if your display isnt, the flickering of your bulbs will cause symptoms like light headedness, eyestrain, nausea, feeling of unwell.

there are apps to test for flickering. but you can just open your camera app and switch to "slow mo video", in that high fps mode, you will see most flickering.

rtings has some tvs tested also for flickering, https://www.rtings.com/tv/tests/motion/image-flicker
carefull with OLEDs, as EVERY OLED tv has flickering by technical limits. even if tests say otherwise. they just check for pwm flickering or black frame insertion, not the technological to be expected flickering.

 

[kushami]

I expect everyone is sick of me blabbing on about this, but please do consider OI as a possible factor in your illness even if you don’t have the stereotypical symptoms such as turning pale and feeling faint.

From what I have read in forums over the years, OI can manifest as brain fog, irritability, nausea, anxiety, feeling like you have low blood sugar, making poor decisions, emotional lability – and now adding light and screen sensitivity to the list.

In my case, I even found that improving blood flow to my brain greatly reduced what would be considered a mental illness symptom (excessive rumination).

 

[Violeta]

@Husband of, compression socks or leggings might help.

 

[MecfsPatient]

Have you looked into a CSF leak?

 

[Husband of]

Have you looked into a CSF leak?

I have wondered but I dont see it as something my doctor is likely going to want to investigate