I got really issues with my eyes

[linusbert]

since a year i have big problems with my eyes, and doctors do just say its migraine without listening, without doing proper diagnostics.. dont know what to do.

despite the usual eye problems, i now got a very weird sensitivity to glares and bright areas like a sunshined wall. it looks like just light... and on the other spectrum dark areas also just look dark, cant see texture in exteme situations and the window is getting smaller i feel.
also those after images.

but the real trouble is the glare sensitivity and sensitivity to bright light especially white leds or sun reflections.
its so that it damages my eyes permanently it seams. a few days ago i woke up, looked out of the window at the neighbours white wall which got sunshit at, and it was so intense i had spot in my eyes for long and now its a scotum.

but thats not enough, just making it dark doesnt fix it even, because darkness makes the problem worse, as is brightness. when i make darkness and the after images are worse. i feel also strain in darkness like its too exhaustive. and bright lit room also seams exhaustive.
nothing makes it better, i do not know how to rest my eyes to improve.
if i knew i need total darkness i would close the blinds in the room for a total week and do nothing else.. but i cannot, because if i do it just one night its already getting worse. its like nerves are fireing like crazy when there is no stimuli for longer.

its like eyes lost the ability to heal for stress and too less and too dark is stressing those.
what can i do to rest my eyes to regenerate?


last year doctor did OCT and looked into the eyes, said everything is fine. of course, what else. but his shining light through the eye actually made it worse. i cannot do this ever again. i got blind spots from this.
ai just says stuff like retinopathy and other bad things, but OCT should have shown that last year even if it wasnt that bad. and OCT was optimal.
ai says neuroophtalmologist , but thats not a good idea either, because there only a fresh assistant doctor is handling my case, and i already got migraine in my files. it would be a waste of time.

i feel what actually is happening is that the retina like my muscles are overstressed and then shutdown.
i am really scared to look out of the window, or go outside now. one glare and i could damage my eye further, even with 2 sunglasses.

does anybody know these kind of issues?
any idea how i can rest my eyes?

 

[Rufous McKinney]

does anybody know these kind of issues?
any idea how i can rest my eyes?

my eyes are awful

I won't be letting anyone shine any lights into my eyes, either. (especially after what you just said) Because I know what your talking about: this damage it causes.

I receive no help for the eye problems despite seeking help twice. They ran no meaningful tests and shoved me out the door. Told me I'm toxic and go get chelated. The eye doctor I saw said he got chelated 500 times but could not answer the question: what happened between 499 and 500?

So eventually the head of the eye clinic, their best doctor, told me I had to go to UCLA. Whatever that means.

I suspect our pupils are not adjusting to variations in light. So THAT is a huge problem. Mine are so much worse now, it was how long ago I visited eye doctors? (5 years)

My eyes pour most mornings. Also my eyes are swollen the swelling feels like it causes the eyes pouring.

Then, I can rub my eyes and it all feels like Acid is in them.

I might be able to focus them a bit, maybe once a week.

 

[linusbert]

my eyes are awful

I won't be letting anyone shine any lights into my eyes, either. (especially after what you just said) Because I know what your talking about: this damage it causes.

I receive no help for the eye problems despite seeking help twice. They ran no meaningful tests and shoved me out the door. Told me I'm toxic and go get chelated. The eye doctor I saw said he got chelated 500 times but could not answer the question: what happened between 499 and 500?

So eventually the head of the eye clinic, their best doctor, told me I had to go to UCLA. Whatever that means.

I suspect our pupils are not adjusting to variations in light. So THAT is a huge problem. Mine are so much worse now, it was how long ago I visited eye doctors? (5 years)

My eyes pour most mornings. Also my eyes are swollen the swelling feels like it causes the eyes pouring.

Then, I can rub my eyes and it all feels like Acid is in them.

I might be able to focus them a bit, maybe once a week.

woa this sounds more nasty than what i got. do you also get permanent blind spots?

 

[InitialConditions]

since a year i have big problems with my eyes, and doctors do just say its migraine without listening, without doing proper diagnostics.. dont know what to do.

despite the usual eye problems, i now got a very weird sensitivity to glares and bright areas like a sunshined wall. it looks like just light... and on the other spectrum dark areas also just look dark, cant see texture in exteme situations and the window is getting smaller i feel.
also those after images.

but the real trouble is the glare sensitivity and sensitivity to bright light especially white leds or sun reflections.
its so that it damages my eyes permanently it seams. a few days ago i woke up, looked out of the window at the neighbours white wall which got sunshit at, and it was so intense i had spot in my eyes for long and now its a scotum.

but thats not enough, just making it dark doesnt fix it even, because darkness makes the problem worse, as is brightness. when i make darkness and the after images are worse. i feel also strain in darkness like its too exhaustive. and bright lit room also seams exhaustive.
nothing makes it better, i do not know how to rest my eyes to improve.
if i knew i need total darkness i would close the blinds in the room for a total week and do nothing else.. but i cannot, because if i do it just one night its already getting worse. its like nerves are fireing like crazy when there is no stimuli for longer.

its like eyes lost the ability to heal for stress and too less and too dark is stressing those.
what can i do to rest my eyes to regenerate?


last year doctor did OCT and looked into the eyes, said everything is fine. of course, what else. but his shining light through the eye actually made it worse. i cannot do this ever again. i got blind spots from this.
ai just says stuff like retinopathy and other bad things, but OCT should have shown that last year even if it wasnt that bad. and OCT was optimal.
ai says neuroophtalmologist , but thats not a good idea either, because there only a fresh assistant doctor is handling my case, and i already got migraine in my files. it would be a waste of time.

i feel what actually is happening is that the retina like my muscles are overstressed and then shutdown.
i am really scared to look out of the window, or go outside now. one glare and i could damage my eye further, even with 2 sunglasses.

does anybody know these kind of issues?
any idea how i can rest my eyes?

You should google 'Visual Snow Syndrome' to see if this describes your symptoms. Note that the syndrome involves numerous symptoms and not just seeing noise/static in one's vision — this is a common misconception. The other symptoms are afterimages (palinopsia), trouble with glare, floaters, photophobia, etc. This is a vision/brain dysfunction, and the eyes are generally found to be healthy.

https://caringmedical.com/prolotherapy-news/visual-snow-syndrome/

 

[Rufous McKinney]

do you also get permanent blind spots?

no....Somebody I know had Swiss cheese vision after screwed up Lasik Surgery.

- the eye thing has been a problem for FAR longer than my worsening ME exhaustion. I had to stop driving at night, 20 years ago because of blurred vision. My eyes always had trouble adjusting to headlights, for instance.

 

[Rufous McKinney]

This is a vision/brain dysfunction, and the eyes are generally found to be healthy.

I'm often saying that what ever is the eye problem and the ear problem it is all tied into the brain and it's all a type of BUZZ. Some days I have far less of it, which is nice.

My feet also go numb. The bottoms/balls of my feet will go totally numb when Electric Brain is intense. This goes away, I don't feel it at all, on better days.

 

[bad1080]

my eyes got really bad after having measles: https://www.aao.org/eye-health/tips-prevention/six-ways-measles-can-affect-eyes-2
maybe there are more viruses that can damage the eye?
also check your vit.A levels!

 

[Wishful]

The effects from blight lights could be retinal chemistry, or could be a processing problem beyond the eye. If you had a dedicated medical team and unlimited funding, maybe they could determine which it was by mapping optic nerve signals. I think ME affects brain cells, in areas unique to the individual, so this sort of symptom is what I expect people to report.

Do the symptoms vary with your ME severity or PEM?

 

[linusbert]

Do the symptoms vary with your ME severity or PEM?

i am not sure yet, in the beginning i thought yes. there was some fluctuations, so i thought at first its overstrained retina, because it feels like what i got with everything else in body, it just heals not back to 100%.
when i have the stars and visual artefacts they seam to go along with the body, improving when everything else does. but the after images and the blind spots i am not sure.

but my muscles and other tissues seam to be not directly related to the severity of eye issues. usually when i get better, everything gets better, but the eyes seam to have different rythm.
it started to get really weird intense when i did a lot of acerola juice, like it made the eyes extreme light sensitive. i stopped the juice, i got better. i am not taking the juice anymore it gets worse. it might be something else i eat which causes this, but i am not sure what, because i am not eating that much. basically i am eating bread and cheese.

i added wild blueberrys to my desert now and hope it does something positive. in the past plant extracts made it worse though... aaaaaah i do not know what to do.

 

[linusbert]

You should google 'Visual Snow Syndrome' to see if this describes your symptoms. Note that the syndrome involves numerous symptoms and not just seeing noise/static in one's vision — this is a common misconception. The other symptoms are afterimages (palinopsia), trouble with glare, floaters, photophobia, etc. This is a vision/brain dysfunction, and the eyes are generally found to be healthy.

https://caringmedical.com/prolotherapy-news/visual-snow-syndrome/

i did see that, could be related.
i also have a neck thing going on, because in the beginning the stars came with certain bad head positions.
and having bad neck posture over prolonged time did do symptoms like tinitus and hear issues.. the eye issue is new though.
even when a physiotherapist worked on my neck, i got a scotum in central vision which did resolve hours later. i feel when i have bad head position while sleeping this might add to the issues.

this image from the article i mean somewhere the neck is wrecked with me

 

[Zebra]

I suspect our pupils are not adjusting to variations in light. So THAT is a huge problem. Mine are so much worse now, it was how long ago I visited eye doctors? (5 years)

I can't shed light on @linusbert's complex visual problems, but I do know what this is because I was diagnosed with this condition.

I believe it's called "tonic pupils" when the pupils don't expand or contract properly to changes in light.

My opthalmologist completely missed this over the course of many visits and many complaints.

It wasn't until I saw a neurologist who carefully examined my response to one of those little pen lights (in a darkened room) that I received validation for what I was experiencing.

I'm sorry I can't be more helpful @linusbert! You deserve answers and solutions!

 

[Rufous McKinney]

My opthalmologist completely missed this over the course of many visits and many complaints.

They sure miss alot. Mine ran almost no tests.

I "have a neurologist" now. (went there, to ask for an LDN Rx so I could get pills and he gave me an RX).

Maybe I might have him check for this tonic pupil business. I can drop by anytime after 11 am. I dont need an appointment. (He's over at the hospital, in the AM). At least then I"d know something more about something.

@Zebra: thank you sweetie!

 

[Zebra]

thank you sweetie!

Your note made my entire day.

 

[linusbert]

Rufous , did you try Blueberrys?
i got myself a box of frozen organic wild blueberrys for the fridge, its easy to "cook" , just put in a cup , close it, wait 3 hours until they are unfrozen, and eating. 100g a day gives like 400-600mg anthocyans.
they should do kinda wonders, maybe they do for you too?
i am on it since 2 days, should notice effects in a few weeks hopefully.

https://www.healthbenefitstimes.com...ealth-are-they-the-ultimate-vision-superfood/

https://www.acs.org/pressroom/press...s-really-help-you-see-better-in-the-dark.html

it says it potentially helps with photobleaching, kinda looks like my issue. also dark adaptation.
in healthy not much effect was found, but for us sick, this could make a difference maybe.

 

[kushami]

I was just watching a lecture by Dr Brent Goodman about diagnosing autonomic problems, and he mentioned pupillometry as being something he considers for his patients. I don't know how it is done or whether it involves shining bright lights or anything that could be damaging.

(He just mentioned it in passing while going through a long list of autonomic signs and symptoms that may need to be covered in a diagnosis.)

 

[Rufous McKinney]

Rufous , did you try Blueberrys?

I eat some blue fruits, but not in very large amounts. I'm afraid my blood sugar, often iffy, would not be good if I ate too many.

I ran into a supplement I take one a day, with a bit more of all that.

I was doing Acai periodically with berries. I prefer to blender up fruit and suck it down with a straw. I feel guilty about the Brazil part and Acai is kept frozen, super big carbon footprint issue.

And thank goodness Im not in the US with the new 50% tariff on Brazil.

 

[Rufous McKinney]

i got myself a box of frozen organic wild blueberrys for the fridge,

I assume you know not to eat protein or yogurt or milk products WITH the blue fruits. It interferes with absorption of the anthocyanin.

 

[linusbert]

I assume you know not to eat protein or yogurt or milk products WITH the blue fruits. It interferes with absorption of the anthocyanin.

i did not, good you said it!

I eat some blue fruits, but not in very large amounts. I'm afraid my blood sugar, often iffy, would not be good if I ate too many.

actually blueberrys should do good things to your sugar, as it acts kiiiinda like a glp 1 agonist. thats what those famous weight loss injection drugs do.
buuut, everytime i eat it with lunch my sugar post meal is higher... but for the other meals it seams to be normal or lower. not sure how that works.
i believe my phase 2 insulin reaction being impaired, so things which seam good nor normal people, like slowed glucose absorption in the guts, might be bad for me, not sure yet.

 

[Rufous McKinney]

actually blueberrys should do good things to your sugar

Some gorgeous ripe local organic strawberries showed up, I"m going to go raid those once they pass getting soaked in iodine. (In Mexico, vegetables and fruits are typically soaked in dilute iodine for about five minutes.

 

[linusbert]

Some gorgeous ripe local organic strawberries showed up, I"m going to go raid those once they pass getting soaked in iodine. (In Mexico, vegetables and fruits are typically soaked in dilute iodine for about five minutes.

now thats interesting, i am allergic to iodine! and i am allergic to many fruits... now i see a pattern. imported fruits having had this procedure.