• AwarenessHealth

  • Is healtcare access without screen or LED light injury available anymore?

My concussion-like symptoms triggered by screens or LED lights are now triggered my such little flicker exposure that I can't do video visits for healthcare anymore without severe injury. At the same time, the healthcare facilities in NYC have all now switched to LEDs (as far as I can tell), making in-person healthcare at those facilities an impossibility for me without extremely severe, long-lasting brain injury. In 2019, an in-person visit in an LED-illuminated clinic caused about a week of mTBI symptoms, including peripheral blindness that was detected by that neuroopthalmologist (but that was gone on a later visit keeping the lights off). I've become much more sensitive since then and a 3-hour LED exposure in 2021 triggered ~10 months of severe mTBI symptoms and now, in 2024, I still haven't come close to returning to my prior baseline sensitivity. I keep getting worse, I'm so sensitive now, that even wearing a blackout mask isn't sufficient protection for more than a very brief period of time in LED lights - either because the mask leaks light, or because flickering light is penetrating through the side of my head.

I'm currently working with my health insurance company to see if there is any possibility for me to see doctors at home now - so far no luck, but options might not have been quite exhausted yet. The only option I've found is telahealth that can provide very limited telephone care, such as prescribing antibiotics for a sinus infection, but that can't do things like renewing a prescription medication for more than a very brief period.

I'm also contacting hospitals to see if they can provide any safe care to people who are injured by screens and LED lights - unsurprisingly, there's no response yet, other than "no."

Has anyone discovered any options for healthcare access that don't use screens or LED lights, especially in the US?

Right now, it seems like I've lost safe access to any healthcare until the FDA figures out appropriate safety regulations - at best, probably many years from now.

But if people like me have to avoid accessing healthcare now to prevent brain injury or otherwise protect our health, how can fair medical research on LED injury be possible?

Are others having trouble accessing healthcare safely?

    jen Hey Jen! I'm the Jordan who spoke to you on the phone a couple months back.

    You should look into dispatch health I believe its called. They are partnered with multicare, might be a good at home visit option if they have that in your state. Not sure if they are partnered with other health care facilities. I personally never used them but I've had family who has and they come out fairly quick.

    Also if get screened for irlens syndrome, you'll be able to get tested and have their custom lenses made. It's the only thing I've found that helps with harsh LEDs/fluorescents.

    Btw didnt you say you used an iPhone? I had BAD concussion like symptoms and other sensitivities due to using my iphone. Back then me "using my iphone" was just briefly flashing the screen at me to read a notification throughout the day..which was enough to totally throw me sideways. I did switch to the non Leica model xiaomi 13T which isn't perfect but still doesn't impair my cognitive function to the extent as the iphone did.. also doesn't make me feel like I'm overstimulated. The sensitivity to light, sounds/stimulation is much better too. Maybe it could also be a decent option for you. I run it at 2941Hz pwm which I'm not sure if you can tolerate ? But like I said even with it not being perfect it's still night and day better than all iphone I've had. You using a iphone for what I assume little time each day might be enough to hold you into the sensitivities you are experiencing.

    • jen replied to this.

        jordan Thanks, Jordan! You're right - I know my iPhone SE 2022 is extremely bad for my brain. Trying to test other screens is definitely on my to-do list, but I'm just super-slow getting to anything involving screen or LED light exposures since I have to take long breaks between any flicker exposures to allow some brain recovery.

            jen I so understand that! I actually bought one of these just to go screenless more. It's basically a screenless phone that runs on T-Mobile. It's has a special AI OS so you can use it all by voice for any tasks, if you did need a screen it does have a laser projector that shines on your palm if ever needed. I plan to use it just with voice paired to Bluetooth earbuds.
            https://humane.com/

            • jen likes this.

              jen I wish I had a great answer for you, sorry to hear this.

              Most practically I wonder if you could find a better sleep-shade goggles that totally block out everything, and have someone assist you, such as a blind person would use a "sighted guide".

              jen that I can't do video visits for healthcare anymore without severe injury.

              Also wish I had a better answer. But blind people do use computers succesfully with screen readers (programs that literally read the screen), such as VoiceOver on macOS / iOS or NVDA on Windows. One of the best computer programmers I know is blind. It's a learning curve but could pay off.

              • jen replied to this.

                    ryans Thank you for the help! Unfortunately, I've tried many blackout masks and none have been close to good enough at preventing injury. I've been trying this strategy for the past few years. They're good enough protection for a couple minutes navigating a hallway with LED lights with assistance, but aren't sufficient for a longer time in flickering light. It seems like we would need some real science/engineering to create sufficient protective equipment that still allows breathing. No one knows yet whether signalling from outside of the visual system can be triggering of injury too, but it's possible. For example, I often feel pain shooting along my cheekbone just below welding glasses when out in NYC after dark, which makes me wonder if part of my injury might not be via the eyes. There's some science suggesting non-visual system biological effects of pulsed or continuous LED light (photobiomodulation therapy), so there's a possibility that just blocking vision might not be sufficient protection. We need more careful science than I'm able to do on this issue on my own without sophisticated strategies to try to identify biomarkers of injury and then develop PPE that can prevent triggering that injury. I've unfortunately reached the point that many trials of what's currently available are hurting me too much without getting closer to a solution.

                    In regards to screens, yes, figuring out how to use a computer without any screen could be useful for some tasks. That's another thing on my to-do list. My initial trial a while ago using the built-in software on my iPhone was frustrating and I didn't know how to turn off the screen so kept hurting myself. But I just now figured out I can use "Screen Curtain" to turn off the screen when Voiceover is on, so I'm going to try again. Thanks for the extra motivation to try again!

                    Regardless of the screen issue, I still need a safe way to see a doctor in person and visit a hospital, if necessary, without incurring severe brain injury with neurological side effects that seriously damage my health in a number of ways.

                    • jen replied to this.

                        jen But I just now figured out I can use "Screen Curtain" to turn off the screen when Voiceover is on, so I'm going to try again.

                        The screen turns black, but the backlight is still on and emits a dim glow....I guess I'll test that, but why can't Apple just turn off the light??!!

                          dev