Hi All. I am 55 year-old Caucasian female, who is a non-traditional medical student. September 30 of 2016 I was in a MVA but at first I thought it was “just a concussion,” despite being held in the hospital emergency room all day until I was able to make words again and someone could pick me up. Lots of pain, memory issues and word issues and such as well as headaches and neck aches. A few years later i was formally diagnosed with migraine. During that time, I also began my premed training and learned that I actually had a traumatic brain injury that led to that migraine, complete with vision and vestibular dysfunction, vergence insufficiency, and a few other items. During the Covid shut down my episodic migraine became chronic, due to lack of continuity of care. I also learned that I had developed both occipital and trigeminal neuralgias, as well as severe chronic MSK pain and spasticity. I have had a lot of triggerpoints and occipital nerve blocks, get Botox for migraine every 3 months, have changed my diet dramatically to be an autoimmune protocol based diet: low acid no gluten no nightshades, etc. I self inject monthly with the biologic Emgality . And all of that seemed to be really helping. By the summer of 2022, I thought I had everything well under control…!

I was packing up my life to move to Kansas for medical school, when I caught a really bad head cold that turned into a chest cold. 🤔 I suspect it was Covid, but I never tested positive despite multiple tests. However, I surrounded by friends who were sick with the same symptoms and had tested positive for Covid. 🧐

I moved to Kansas and started medical school and within days, realized something was very wrong. I have never been in so much pain in my life. Within a few weeks I was suicidal and did not understand what was going on. My symptoms were drastically worsening by the day and I felt like I was having a panic attack nonstop.

My school is brand new and has a very BRIGHT and intense blue spectrum LED lighting installation that is so severe, combined with bright white walls and floors and reflective surfaces and bounced light not to mention large BRIGHT projection screens and monitors on almost all wall walls, adding additional light and reflection….after I had the suicidal thought, I requested a medical leave of absence and tried to figure out what was wrong with me.

Turns out my previously garden variety photophobia that was previously well-managed in my almost 30 years career as a Commercial/Film/TV visual effects supervisor, who was on set all the time, for living, and on monitors for a living …went into extreme overdrive and is now triggering everything dramatically. It also turns out that it triggers my inappropriate sinus tachycardia, a dysautonomia that I’ve recently been officially diagnosed with….Which I suspect I’ve had for a long time, and had such mild symptoms that never came up as an issue. Now I’m struggling to functioning on campus, even though I only have to be on campus a few days a week for labs - my school has provided reasonable accommodations of remote lectures, but refuses to extend accommodations for when I am forced to be on campus for labs - so I take a lot of drugs, prophylactically, I wear a neuromodulation device, a wide brimmed visor, Avulux filters or polarized lenses….yet it is completely physically, emotionally and cognitively exhausting and disabling.

It has completely annihilated me and I’m totally bewildered. I found this website doing a search for PubMed and related research on blue spectrum LED’s.

My MacBook Pro monitor is OK in dark mode, sonic hurts my eyes and my BenQ monitor is fairly tolerable, as long as it’s in dark mode.

The super blue LED headlights at night also annihilate me and make my face crawl with electricity, just like the lighting at school….

So what is going on with all of us?

also: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10052719/

    premedwidow

    Wow! I do hope and think you've found the right place! I have different sensitivities (to screen flicker type issues). However, I been using colored lighting gels to help myself and a friend reduce symptoms. We suspect it is to blue light issues with some LED home light (blue spectrum lighting on kitchen range hoods) in addition to subliminal light flickering.

    These are the gels I am using. I have them over a PC laptop screen as well.

    Newer model cars can also have subliminally flickering headlights and tail lights as well. That could contribute to symptoms in addition to blue light spectrum.

    As for buildings, I know of those who inspect and recommend guidelines for biologically safe building design: https://buildingbiologyinstitute.org/

    Thanks @"photon78s" for sharing the gels. I went on campus one day with my iPhone, spectrometer and Flicker Meter and took readings during lectures aka “labs”

    The lighting was definitively in the blue spectrum, but more interestingly to me was the amount of Flicker I detected. It was a imperceptible most of the time to the naked eye, but I can feel fluctuation in the electricity in my face. Sometimes you can see it in the video feed that our fed all over the rooms into these other monitors on every wall.

    It’s it sounds weird, but my trigeminal neuralgia seems to react to the light flickering. Anyone else have that experience? It’s very bizarre to me. Also, are there any other brain injured post mTBI photophobia people here?

      premedwidow

      Do you know of this website? The author of the site has participated on this forum.

      https://www.flickersense.org/led-health-effects/unanswered-questions-in-biomedical-flicker-research

      https://www.flickersense.org/testing-leds-and-screens

      Quoting from the latter link:

      I suspect that flicker causes neuroinflammation in the trigeminal ganglion, leading to the pain and feeling of pressure in the temple. I suspect that sensitization in the thalamus leads to the allodynia and other symptoms that might involve the cortex or other parts of the brain.

      Outside the scope of this forum, have you measured EMF (electromagnetic fields) intensity of your facility?

      premedwidow
      That link you posted I can relate to those symptoms but I will say that getting screened for irlens syndrome and getting their special color filtered glasses stopped the sensitivity to glare, photophobia, and even some led sensitivity. Unfortunately didn't fix the screen issue for me, just lessened symptoms at most. But away from screens they helped alot for me going outside and such. I wouldn't be able to go into Costco without them because the flourescents are so bad but they mitigate them when wearing.

      I found that using screens cause my photophobia, if I stay off all screens for weeks to months it goes away completely. The irlens glasses are cool because everything appears same brightness but that harsh photophobia feeling is gone. You also don't see the color in their lenses if it's a beneficial color you tested for.

        @premedwidow I'm so sorry you're affected too! I'm the author of the flickersense.org site and it sounds like we might have some experiences in common. For me flicker is a huge problem and in classrooms, projector flicker can also be awful -especially the kind that cycles between red-green-blue (visible in slo-mo video). Since you have a meter and are medically/scientifically inclined, it would be really helpful to learn more about the kinds of light that are triggering symptoms for you. I recently sent a batch of information collected about myself to the FDA Office of Radiological Health - to my knowledge the first such data they've received, have shared it with some scientific collaborators, and have posted a public version here: https://www.flickersense.org/testing-leds-and-screens. If you or anyone else on this forum were able to collect such flicker/light spectrum data about yourself, I'd encourage you to please share it with the FDA and I may also be able to connect the data to people who might study it. I also encourage everyone to please report their health issues to the FDA using Accidental Radiation Occurence form 3649 (notes on reporting here: https://www.flickersense.org/How-to-report-LED-health-problems)

          4 days later

          jen

          jordan

          I had migraine and some neuralgia symptoms before arriving at my medical school, but nothing even close to what this physical environment does to me.

          Part of the issue is definitely related to the BARCO projection systems that they use, which do cycle red-green-blue……color banding from hell when I attempted to record a "lab" lectures with slides one day….

          Computer screens definitely contribute to the eye strain, exhaustion, prime the painful left temple….etc. but being under the overhead LED's and blinded by the BARCO projectors puts me into a complete fight or flight response - documented by my Cardiologist as Inappropriate Sinus Tachycardia (a Dysautonomia cousin of POTS) triggered by the exposure to this environment.

          All the lighting on campus physically hurts….my face throbs - specifically worse and more painful on left side - which is the side of my MVA impact, migraine, trigeminal neuralgia, cervicogenic pain/head and throughout upper back and throughout my face and skull…..all of which is consistent with your theory Jne - jen - of neuroinflammation in the trigeminal ganglion - left temple for me. It's definitely a key part of the mechanism of this torture.

          I simply do not have the TIME nor bandwidth thanks to the constant pain I'm in, to jump into a reporting process that looks time-consuming and learning curve steep…..I'm a medical student trying to learn and pass tests so that eventually I'll be able to help others like me….

          Ironically going to medical school has already been one of the most painful and stressful things I've ever done, due to the intense lack of support and active hostility towards me and my disability….

          I suspect that we are all experiencing the effects of these photosensors that were discovered in the past 20 or so years: ipRGC's….

          Trying to learn about these and use that as a class related project

          https://link.springer.com/chapter/10.1007/112_2011_4

          https://doi.org/10.1016/j.tins.2013.10.004

          https://doi.org/10.1523/JNEUROSCI.4132-11.2011

          https://doi.org/10.1177/0333102418784750

          etc.

          More as I'm able….back to school stuff and legal stuff - related to the ADA issues at school - for now.

          I'm so grateful to have found you all.

            premedwidow I totally understand not having time, especially if it involves screens. As far as reporting goes, if you ever do have a little time, your experience could be very helpful to share with the FDA - they need our injury reports to know there's a problem and to justify starting to take action and hopefully eventually develop safety regulations. Each of us seems to have a somewhat unique story in terms of symptoms, even though there's also a lot of overlap among us, so I think it's important that the FDA hears from as many unique voices as possible, and your story is compelling.

            I've been trying to convince the FDA that their current reporting process is too hard for us and doesn't garner very useful information and have suggested they allow phone reporting, but no luck so far. Perhaps if you emailed them the link to this thread, that could suffice to share your symptoms and experience. Their official form is Accidental Radiation Occurrence form 3649 and you can basically say "see attached" for all of the non-useful specific questions and then attach your story. It can be sent in by snail mail or emailed to RadHealthCustomerService@fda.hhs.gov. The FDA Office of Radiological Health is probably our only hope for getting safety standards eventually. They'll also assign you a case number, which could be useful to reference in some of your other legal strategies. I've also spoken with them on the phone and know others have too after requesting this.

            I really hope you're able to obtain safe access to an education! It seems like we're in a limbo area since the wold assumes lights/screens are safe and can't possibly cause injury. We should have the right not to be forced to undergo injury that that create severe disability. If I haven't been injured by lights/sceens, I have no disability, so have no protection from harm in the current system. Even the medical system is excluding me from safe care.

            If you're researching the molecular biology that might underlie flicker sensitivity, iPRCGs are a candidate (I read a lot about them, but it's not totally convincing to me that they explain everything), but it's also possible that light-absorbing proteins or other molecules targeted in photobiomodulation therapy (not necessarily restricted to the known visual system) could also be targets - either ameliorating effects or triggering symptoms. Unfortunately, that field has been too sparsely explored to date to provide more than hints of possible targets, but they've found that the dose, wavelength of light, and whether/how the light is pulsed matters for creating biological responses. Minutes of light can trigger over a month of effects, suggesting signalling that could trigger changes in gene expression. That's consistent with how long I'm affected after an injury - often weeks to months. There's research on brief treatments with red and near-IR light being anti-inflammatory and helping to reduce mTBI symptoms. There are the most papers about this and the target proteins/pathways have been fairly well studied. There are different protein receptors that could be targets of blue or green light in photobiolodulation therapy in a family that includes touch and pain receptors, but this has very little study so far. I link to some reviews on photobiomodulation here. I wonder if the high near-IR/red light contributes to why I can tolerate incandescent light flicker much better than LED flicker. It's pure speculation, but I wonder if pulsed light might be triggering signalling from a touch/pain receptor in the brain that initiates an inflammatory response. My most common and persistent symptom is a feeling of pressure/swelling in my right temple. I also know from my testing that color-to-color flicker is a lot worse for me than flicker without sequential color change. I know sequential color flicker can be bad for people with epilepsy (like in the Pokemon cartoon incident in Japan), but I don't happen to know anything about the underlying molecular mechanism of that. A lot of LEDs seem to have sequential color flicker.

              jen You might be onto something with touch/pain. I turned off haptic and the constant ir light on my phone months ago as got the feeling that they kept amping up something. At one point I also bought an Apollo Neuro device and discovered just how much the senses / nervous system could be amplified from something as simple as just driving vibrations into some bone in the body. They got some studies on that. https://apolloneuro.com/pages/studies-roundup

              More than happy to discuss random theories in some thread. Went down the rabbit hole on photobiomodulaton, magic 40 hz flicker, the effect of red light on epilepsy, NMDAr / temporal acuity, mitochondrial issues, occular rivalry and too many other things this week. Just didn't have anywhere to rant about them. I feel like this could be solved even without new studies.

              Clinical Evidence of Nurosym?

              https://nurosym.com/pages/clinical-evidence

              Seems like their are a lot of vagus nerve modulation devices coming out these days.

              It seems to me that the pulsed aspect is crucial element as I have read about in the emf/emr arena (still talking about triggering energies and radiation). For example:

              Expanding Use of Pulsed Electromagnetic Field Therapies

              https://www.tandfonline.com/doi/abs/10.1080/15368370701580806

              Neurophysiological Effects of Flickering Light in Patients with Perceived Electrical Hypersensitivity

              https://journals.lww.com/joem/abstract/1997/01000/neurophysiological_effects_of_flickering_light_in.6.aspx

              Pulsed Electrical Stimulation of the Human Eye Enhances Retinal Vessel Reaction to Flickering Light

              https://www.frontiersin.org/articles/10.3389/fnhum.2019.00371/full

              Control of the Flickering Light Sensation Based on Superimposed Electromagnetic Fields

              https://ieeexplore.ieee.org/abstract/document/7112153

              jen Thought about your note on temple swelling. Could it be that it induces temporal arthritis, and that is the cause of the severity? In which case I would really look into that as there might be remedies to shorten the hits once it sets in as it is vascular.

              I actually had an experience here one day where I took Some Q10 after a long break, pretty rapidly afterwards got pretty heavy pain in my right temple, that went away rather fast along with my visual snow and text glow. Pretty weird experience. No idea if the pain altered some hemodynamics, or if it just forced things to shift to some other brain state. I would get that Q10 could improve things as it helps the mitochondria, but I can't really explain that pain. I've seen similar anecdotal reports from other with visual snow that it disapears after some severe pain.

              If symptoms reliably show up in the same spot it would be fairly trivial to check what is going on with EEG and MRI. Not necessarily that expensive even if it isn't covered by health insurance. Might be worth it if you can get a clearer picture on where something is happening so it is easier to dig thru studies.

              Even considered buying one of these home EEG devices and eye tracking with micro saccades to see if it is possible to get some better intuition about what happening.

              • jen replied to this.

                This makes it seem like hospitals will adopt even more harmful LED lighting:

                Transmitting patient’s health care information using LEDs in hospitals through VLC technology

                https://link.springer.com/article/10.1007/s12596-023-01650-8

                Full paper

                VLC refers to visible light communications. They do mention the need to reduce flicker but I'm not sure their requirements will be safe:

                The rapid and repetitive changes in brightness is termed as fickering. Flicker causes distraction. Becomes hazard to health when the area of retina exposed to flicker and also it causes headaches and even epileptic seizures [8]. The danger can be most catastrophic, when the flicker occurs at the frequency range of 3–70 Hz [8]. The offender for the flickering of LEDs caused by pulse width based digital dimming modulation drive circuitry. The vDSM, a pulse width based digital dimming modulation technique supports LEDs dimming without flickering as the dimming frequency is more than 300 Hz [9].

                async If symptoms reliably show up in the same spot it would be fairly trivial to check what is going on with EEG and MRI.

                Thanks so much for the ideas! The pressure is focused in my temple, but expands to include a larger area when LED injuries have been more severe, including inflammation closer to the eye and probably the ear too, as I can develop vestibular/balance impairment. Sometimes it expands to include pain in my jaw or along my cheek on the bad side. Brainfog/short-term memory impairment, insomnia, and nausea are common with LED injury for me. With enough time away from screens/LEDs, the symptoms all go away. I need to keep things at a level where symptoms are gone or extremely low with only a little head pressure, as debilitating brainfog starts next.

                I've been checked out by many doctors in the past, but unfortunately don't have a safe way to do any further testing now that all of the medical facilities here have installed LEDs. 2 MRIs showed "no structural basis for headache" and an EEG was also normal. Unfortunately these were just normal MRIs, not fMRIs and I was fairly symptom-free during both of them since they have to be scheduled way in advance so I happened to be in a period of having avoided LEDs for long enough that my symptoms had subsided. I've asked, but doctors have said there isn't a system to do evaluations when I'm actually experiencing symptoms. Really annoying. A neuroopthalmologist has detected peripheral blindness on my bad side when I was exposed to the LED lights in his office (and then about a week of concussion-like symptoms), but it wasn't present on a later visit when the lights were kept off. My speculative theory is that maybe there was inflammation that created pressure on nerves in the visual system.

                @"async"#p34507eye tracking with micro saccades
                I know many people on this forum experience eyestrain, but I don't , with the exception of one day with especially intense head pressure/swelling that had expanded to create tightness around my eye that made it hard to move my eye from side-to-side. LEDs often trigger pain and initiate concussion-like symptoms for me even when my eyes are closed and/or I'm wearing a blackout sleep mask, so it doesn't seem like my eyes need to be doing any tracking for brain injury to occur.

                I'm happy to chat more about theories via DM.

                9 days later

                please keep posting. this medical detail is helpful.

                5 days later

                jordan getting their special color filtered glasses stopped the sensitivity to glare, photophobia, and even some led sensitivity. Unfortunately didn't fix the screen issue for me

                Really interesting experience with Irlen lenses:

                They actually work on my M1 MacBook Air.

                Prior to this, on other laptops like my otherwise perfectly usable 2012 Lenovo Yoga 13" (which I entirely disabled dithering on) or 2015 12" MacBook, putting my Irlen lenses on simply adds way more glare to those screens and makes me feel nausea, I have to take my lenses off when using those laptops because otherwise they suddenly start feeling unusable to me.

                In addition, my lenses also don't work on my 2015 15" rMBP (AMD) which already is unusable and has really bad dithering, putting them on doesn't improve anything and makes me feel even worse looking at that computer, my Irlen lenses add an extreme amount of glare.

                HOWEVER…

                I'm having an ENTIRELY different experience wearing my Irlen lenses (color filter only, no perscription) while using my M1 MacBook Air + Stillcolor.

                Unlike the other laptops, I do not feel ANY additional glare. My eyes are not twitching more when I have them on, in fact the movement of my eyes feels more stable. The lenses are actually WORKING and helping reduce strain even further. I feel like I can type way more without the screen going "double vision", and colors feel more relaxing.

                I have no idea what makes the panel in this laptop respond entirely differently from other PC and Mac laptops but it feels like my Irlen lenses are actually "compatible" with my M1 Air.

                Since my experience was already pretty good on my M1 Air's panel with the Stillcolor app, this makes it even better and I'm finally able to take advantage of the depth perception and expanded field of vision benefits I get while wearing Irlen lenses WHILE using my laptop.

                -

                As a side note, prior to this discovery, the only screens that were "compatible" with Irlen lenses for me were (surprisingly) OLED iPhones. Putting the info out there that Irlen lenses actually help a LOT with OLED, totally makes my iPhone 14 Pro look different, backgrounds look much less "noisy", and I get WAY less dizzy while using OLED if I have my lenses on.

                I am pretty sure Irlen lenses work on OLED displays because they reduce PWM sensitivity, as they also consistently make rooms with flickering LED and flourescent lighting much more tolerable.

                (Funnily enough, this means using my OLED iPhone with Irlen lenses — at least on iOS 16.4.1, LOL — is actually WAY more comfortable to me than using my terribly temporally dithered LCD iPhone SE 2 on iOS 17.2.1 no matter if my lenses are currently on or off. Although I have a much worse time using OLED without my lenses on though.)

                -

                However, this M1 MacBook Air is the first traditional LCD I've used that actually feels BETTER when I'm wearing Irlen lenses instead of introducing additional symptoms, which has totally surprised me. Feels so amazing to finally be able to simply keep my lenses on after opening my laptop.

                  DisplaysShouldNotBeTVs wow that's amazing I'm glad to hear the benefits on those devices! The glasses are designed to "calm" the brain and stops visual stress. My irlens diagnostician said that everyone is different so after using them for awhile it can help heal the brain from any past trauma (concussion for example) so you could get to a point where those added benefits are still there without the glasses after wearing them for awhile.. If not then you'll just only have them when wearing the glasses which is fine. I do also want to add that these glasses work with flourescent and led sensitivitys. I cannot walk into Costco without them lol. I think these could help a lot of people here!

                  Edit: what colors did you end up with on the lenses? You could always go back for further improvements by adding more colors too 🙂

                    jordan I do also want to add that these glasses work with flourescent and led sensitivitys.

                    Yup this is what they're most useful for for me, get a LOT less tired in buildings with flickering lightbulbs as long as I have them on.

                    I also have a second pair of lenses with a distance perscription and those are game-changing for non-indoors use in sunlight. The outdoors looks absolutely beautiful and more vivid then I've seen in YEARS — they entirely makes the outdoors feel like the 2000s again.

                    jordan you could get to a point where those added benefits are still there without the glasses after wearing them for awhile

                    Yep my depth perception has been getting better in general.

                    jordan Edit: what colors did you end up with on the lenses? You could always go back for further improvements by adding more colors too 🙂

                    Greenish yellow with 2 layers, not sure the exact values. However, trying to add an extra layer seemed to add too much glare.

                      DisplaysShouldNotBeTVs I'm gonna go back and have my colors updated I haven't wore mine in awhile. For me they took away OCD/ADHD like symptoms and especially anxiety!! I first had aqua blue and then switched to aqua blue + double purple. I never have wore them with my Xiaomi 13t amoled screen so I think it'll be worth to revisit them and see if it helps the "text jumping at me" feeling. I'm so happy they are working for you !!

                        dev