degen LED lighting in the workplaces kills me. The absolute worst. Restaurants too. Worse than screens

Oh really, I thought I was the only one. Sorry about your situation.
My seat is at a window under the intersection of a vertical line of LED lamps and an horizontal line of fluorescent lights. 2 in 1, what a jackpot. In addition I also have reflections from outdoor light. In fact paradoxically at night it is slightly better.
Now when everyone is gone I move with my laptop to a conference room where there are arrays of mini-LEDs. Those feel so much better than the big lamps in my office. I need to find out why. I need to accurately measure the flicker.
By the way, I suffer from two type of disturbs. One is more physical, like eyestrain, neck and face muscle tension and eyelid twitching. The other is very poor concentration and extreme fatigue. When I go home I feel exhausted as if I have been run over by a truck. When I get in in the morning, outdoors is typically beautiful and sunny. I enter the office and immediately feel like a guinea pig in a hospital laboratory. The difference to natural light is huge. I really do not know how they can call that fluorescent bulb "natural white". It is insulting.

diop There are of course big organisations like Lightaware which are trying to get to the bottom of this issue and persuade manufacturers to produce better LED lighting.

Yeah, I did speak with them. The problem is we do not have a crystal clear evidence of what is wrong in the lamps and the displays. And according to all the doctors I visited I am healthy. Basically, I am making my symptoms up.

laur5446 Let me know if I can help with the email part because I don't want to give up yet.

Thanks, let's try to work on this. I downloaded articles probably a year ago but never made a move as I need to catch up with so many things...

    AGI I need to find out why

    Probably comes down to how they are powered. If the LEDs are powered by a standard light bulb fitting that will take any type of bulb they will flicker. But, if they are driven by some purpose built LED power supply, with a proper AC-DC rectifier, they will not flicker.

    • AGI replied to this.
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      3 months later

      I know not everyone is keen on seeking medical treatment here, but I thought I would add an update to my (lack of) progress.

      I have been taking Gabapentin for a couple of months now. It does nothing to help my eyes but it seems to have had a positive effect on my anxiety (although it's possible my lack of anxiety has been due to being stuck at home with nothing to do during quarantine--I have been furloughed and have been able to take a break from computers).

      I had the neuro-ophthalmologist send a referral to the Mayo Clinic. Sadly, and weirdly, they called me and said their neurology, ophthalmology, and pain specialists all felt they could not help me. It's possible the referral was written poorly, but I thought it was very sad that this very highly regarded medical facility declined to try to help me.

      My primary doctor has not found a neurologist for me to see and states I have to wait until this COVID situation has died down.

      I still want to see a neurologist but I guess I have to wait...my next steps are to email some researchers and possibly see a vision therapist like Martin has seen--although I have been told I don't have CI anymore. I might try Neurolenses but I have a feeling they won't help.

      I have a new laptop that hurts and my phone still hurts--I tend to choose to ignore this problem when I can because endlessly trying to find solutions is so stressful, costly, and makes me feel hopeless.

      Anyway, if anything else worth noting arises in my search for solutions, I will add another update.

        Hi, I've got same problems as you (with light and screens), but recently I manage to made a little discovery which maybe can help us somehow. My problems starts about 4 years ago, and I tried many things which didn't help me at all. Recently, while surfing the net, I came across "ayurvedic glasses", you can find over the net that they're able to fix/cure your vision problems. They're cheap, so I've decided to give them a try and ordered a pair. It stated that due to little pinholes, light entering the lenses straight, unlike ordinary glasses (or without glasses). You can't just wear them and forget about everything, you have to get used to them, starting from 5 minutes a day, and increase this time by another 5 minutes each day. I tried to use them in front of one of the screens which cause me symptoms even after about 10 minutes, and what I've realized, after couple of days, when I was wearing them for 30 minutes, none of the symptoms occurred at all! Unfortunately, there is one downside, after wearing them for few days I've noticed that my eyesight was getting a bit worse, so I stoped in fear of any eye damage that them can cause me...

        All in all, my discovery was that, I didn't experience any symptoms when wearing glasses! Maybe it will help us deal with the problem somehow. Please tell me what you think about this. Maybe someone tried those glasses before? Thanks!

          This was pretty crazy to read, it almost exactly mirrors my path over the past 15+ years.

          The sad truth we all need to accept is that doctors do not know what is wrong here. I've seen over 20 specialists in 8 states and counting, and gotten the same brick wall every time.

          Basically, after years and years of searching and traveling, it boils basically down to this:

          It is a brain problem, not an eye problem.
          It MAY involve the trigeminal nerve, specifically the supraorbital branch that pierces the currogator muscle near your eyes.
          It can be a screen issue or an issue with what drives the screen (good screens can go bad when switched to different sources)
          There seems to be a likely sinus connection
          And thats about it.

          I've tried every medication under the sun, had more MRI's and brain scans than you can imagine, travelled all over the US and seen the top specialists, been to countless quacks, cooks, and snake oil salesman, did vision therapy till the cows came home, and none of it was a cure. The only positive things I found was vision therapy helped with one every specific case (credit card terminals in stores), a beta blocker seems to increase my resistance to CFL lighting, and migralenses help a little bit.

          My current nuerologist, who I eventually settled on because he was the first one to level with me and not feed me bull, said that problems like these are not uncommon, they tend to go away as we age. And I have experiences that, I started getting this issues in my late 20's, I am 45 now and there are things that bothered me before that no longer do (CFL's used to be my biggest trigger, now they are almost harmless, although you rarely come across them anymore, and LED headlights on cars used to be awfulo and they have gotten much more tolerable over time). He said based on his observaitons these tend to age away around your mid 50's to 60's. Not a great diagnosis bu it's something at least

            bisk89 Recently, while surfing the net, I came across "ayurvedic glasses", you can find over the net that they're able to fix/cure your vision problems. They're cheap, so I've decided to give them a try and ordered a pair. It stated that due to little pinholes, light entering the lenses straight, unlike ordinary glasses (or without glasses).

            If they help you then great, but no offense, those look like total bunk.

            laur5446 I had the neuro-ophthalmologist send a referral to the Mayo Clinic. Sadly, and weirdly, they called me and said their neurology, ophthalmology, and pain specialists all felt they could not help me. It's possible the referral was written poorly, but I thought it was very sad that this very highly regarded medical facility declined to try to help me.

            They were just being honest. Our condition is so rare it is not studied, or known, and there is no treatment or even a name. You learn after a while that despite all the "oohs" and "ahhs" around modern day medicine, it is extremely focused on the most common ailments people have, As soon as you stray off the beaten track into somehting more exotic, you very quickly reach the limits of medical science and are left in the cold.

              ensete If they help you then great, but no offense, those look like total bunk.

              You missed the point...

              ensete The sad truth we all need to accept is that doctors do not know what is wrong here.

              So true.

              ensete a beta blocker seems to increase my resistance to CFL lighting

              Could you please say which beta blocker?

                AGI Could you please say which beta blocker?

                Propranalol. I started at 60mg, then went up to 80, 120, and settled at 160. I have been at that dose for about 10 years now. It's not a cure by any means, but as I tell my nuero, it's better with it than without it. And as an bonus I have great blood pressure 🙂

                  ensete Propranalol.

                  It seems to be an anxiolytic, does not it? Any side effect?
                  Are you taking it specifically to cope with eyestrain or for blood pressure-related reasons?
                  Thanks.

                    AGI It seems to be an anxiolytic, does not it?

                    No, it's a beta blocker. It's used primarily to treat high blood pressure. It is also indicated to help with migraines. I was prescribed it to help with the migraines

                    Any side effect?

                    When you first start using it, or whenever your dosage increases, for about a 3 days you feel awful. You have zero energy, your arms and legs feel like they are made of concrete, you are sluggish. It sucks. After you adjust however you feel perfectly normal. Your heart rate is overall lower and you have a few less bpm and will get winded a little faster than normal. It is also dangerous to skip a dose since your heart adjusts to running on 1/2 the adrenaline so going back to normal is risky.

                    • AGI likes this.

                    @ensete Thanks.

                    Are you "intolerant" also to LED and fluorescent lighting?
                    If I remember correctly, you wrote somewhere that your problem is color rather flicker or dithering. How did you find it out and what does that mean? Are there colors that your brain cannot process?
                    Once I was tested for Irlen syndrome but I could not tell a difference between the various lenses I was offered to try. I mean, within the couple of minutes that the test took, it was impossible to make an assessment. Have you tried glasses that filter out a specific range of the visible spectrum? And have you ever experienced photophobia from intense sunlight?
                    I am a sinusitis sufferer too by the way. And AC can be as bad to my body as offensive lighting.

                      AGI

                      Are you "intolerant" also to LED and fluorescent lighting?

                      That depends on what and when. Here's my history:

                      When I first encountered symptoms, it was a little over 15 years ago, and I was triggered by CFL bulbs. I should mention that standard tube fluorescent did not cause me any issues, just the compact ones. That sent me down our long journey. At the time LED lights were not mainstream, there was no such thing as LED light bulbs, it was still an incandescent word.

                      As the years progressed, incandescents started to get more and more replaced by CFL's. This led to the question that to this day I have not answered, was I born with this condition and just never noticed because CFL's weren't invented until later in my life, or was it something I developed? Probably never figure that out.

                      Anyway, as the years went on and my misery progressed and as I started realzing how rare my condition was since doctor after doctor could not help me, I started on migraine treatments. Most did nothing, but propranalol helped a little. A few years after that I was tested for Irlen syndrome and "daignosed" (as much as one can be diagnosed for a syndrome) and when through the lens test procedure and ultimately get a pair of lenses made that 100% cured my condition. For 3 months. After that, they stopped working, and despite multiple attempts at re testing and hundreds and hundreds of dollars on new lenses getting made, I was never able to find a lens color that made any help at all, so I abandoned that road.

                      It was around this time LED's started coming out, and CFL's started waning in popularity. I immediately noticed that LED's were much more hit or miss, some LED's were instantly pain inducing, but some LED's cause me no issues whatsoever.

                      Around that time I started down my nuerofeedback and biofeedback treatment, and this is also when smartphones started coming onto the market and my issues with those screens started happening. Much like LED's some were fine, most were terrible. The nuero and bio helped a little more in my CFL issue but not with the LED issue. At this point in my life, CFL's don't bother me much at all, not that it matters since they have basically vanished from the face of the earth since LED's supplanted them.

                      For LED's, some things have gotten better over time, when car headlights switched to LED's it was a REAL problem. But nowadays LED highlights rarely cause me any issues at all. After one of my sinus surgeries I was put on a daily anti allergy medication and this helped with the LED sensitivity. It might be the medication, it might be the surgery, it might not be anything I did, maybe the LED's just got better or something changed in my brain that made it not as bad.

                      The primary irritant at that point became screens since everything in the world was moving to digital displays, phones, tablets, thermostats, credit card readers, cars, you name it. And most of them caused severe eye strain. I was diagnosed with convergence insufficiency and went through vision training, which 100% cured me for credit card terminals only. No improvement on any other digital screen. Explain that one.

                      The color connection came up when I found I was able to take a screen that was arming me (PC screen) and completely eliminate the issue by loading the correct ICC profile. Like 100% eliminate the issue. And certain colors of web pages (specifically a very light gray, #FEFEFE is the hex code) will instantly trigger a migraine. Lucky for me Microsoft picked this color as it's new toolbar background color in Office 2016 with no way to change it. Thanks Microsoft. Also lots of bright white can cause me issues, which was awesome when Google decided that Android should no longer be based on dark tones by instead be a retina searing white.

                      So thats roughly where I am today. I've seen countless doctors in 7 states and have learned no one out there has "the answer" we are looking for, and just hoping my neurologist is correct in telling me the most likely outcome is that I will age out of this around my mid to late 50's to 60's.

                      I am a sinusitis sufferer too by the way. And AC can be as bad to my body as offensive lighting.

                      This is just something I have observed. Nearly everyone I have met with our condition also seems to have severe sinusitis. I have had 3 sinus surgeries myself. I met one person who had identical visual symptoms to me, and had unrelated surgery on his pallete, and to his surprise his lighting and screen issues were 100% cured after the surgery. My pet theory is that the nerves responsible for the pain we get run through the sinus and pallette area (it is a heavily enervated area) and reducing inflammation there may block the brain signals causing our issue? Who knows.

                      I also know that for some people stuff like flicker, dithering, and PWN can cause issues, but for me they are not. Which indicates different triggers are affecting different people and then producing the same symptoms, or triggers are getting misidentified and leading us down rabbit holes. At this point in my life I have abandoned any hope for a "cure", and have adopted a strategy of leading as pain free a life as I can: when I find a setup for a computer, TV, phone, whatever, that causes me no pain, I NEVER change it unless I absolutely have no choice. Yes that means I have a 7 year old smartphone and a 8 year old TV and a 12 year old car with no digital displays and I will never use Windows 10, and if anything breaks and I have to find a replacement its ruins my life for a while, but thats just the hand I got dealt. There is no feature, benefit, new capability, performance increase, or anything that is worth being in pain for. Just my philosophy

                      And AC can be as bad to my body as offensive lighting.

                      I had to install an $18,000 mini split system to re mediate my issues with HVAC.

                      That was a lot of typing.

                      • AGI likes this.

                      Thanks a lot for all the details. I feel you.

                      Out of curiosity, why do you think the AC affects us so much? You seem to have solved that problem. What was your finding?

                      About vision therapy, could you briefly summarize the type of exercises you carried out? Were more of the Brock String type or cards/colors etc etc?

                      Do you also have vertigo / lack of balance issues? I ran some balance tests with closed eyes and was ver worried about my poor performance. Recently, I also discovered that I suffer from seasickness. Furthermore, a few months ago I started swimming in the sea and I had a few episodes in which the sea was moderately rough. When I got out of the water, I fell to the ground. I tried to stand up and fell again. I had to wait minutes to recover. My head was not spinning though. My whole body was affected. The first time I thought it was from excessive efforts and low blood pressure, but it happened again and I am now sure it was caused by the waves.
                      I suspect that all those episodes are related to a complex disturb which manifests itself also at work under certain overhead lights. Indeed in the office I feel fatigued, I lack concentration and somehow my balance and consciousness of what surrounds me are impaired.

                      18 days later

                      This is interesting. I have never seen these but I don't think they would be a feasible solution. Have you tried them again?

                      ensete This was pretty crazy to read, it almost exactly mirrors my path over the past 15+ years.

                      I appreciate hearing your experience and reading about all you've gone through to try to find a solution/cure. It definitely makes me feel pretty hopeless but confirms my thoughts that I will just have to come to terms with adjusting my life around this problem. The one thing that will always be a nightmare is work...I can avoid screens at home but I can't at work. And I can't find a home setup that works for me but don't have the money to continuously switch out electronics. Why does your neuro say it's likely you could age out of this condition? It would sure be amazing to just wake up one day and things would be back to the way they used to be. Can I ask what states you saw specialists in? I hope to move to the northeast in the near future and hoped doctors may be more helpful up there but overall, I think I will just continue to meet brick wall after brick wall like you have. Although, I think you have done a good job narrowing down possible causes--there is just no help available. I actually have never had any serious sinus issues.

                      ensete You learn after a while that despite all the "oohs" and "ahhs" around modern day medicine, it is extremely focused on the most common ailments people have, As soon as you stray off the beaten track into somehting more exotic, you very quickly reach the limits of medical science and are left in the cold.

                      Yeah...I am learning this quickly. 🙁

                      Update below
                      I have tried some more strains of medical marijuana that have not helped. I tried kratom (legal) and it did not seem to help. I think I will just give up with medical help until I move (later this year or early next year) but I will continue to update periodically if anything changes.

                        laur5446 Im sorry to read that. Did you give a shot to the eye exercises? I think if you followed through, you could get some improvement. Might not cure it completely, but for me the pain is 1000 times better.
                        Judging by the tests I gave you on skype, you have a serious case of convergence insufficiency. I am helping a friend right now with the same. Its a lot of work, but at least a thing that can be improved until (if, when) tech companies take notice and change something finally.
                        I can make you a shared google docs sheet with progress reports.

                          martin I'd be interested in progress reports--how are you measuring progress? By pain symptoms?

                          And yeah, I keep starting the exercises and giving up. I have greatly appreciated your patience and assistance but I think I need some in-person guidance because I worry I don't do them correctly. I am still toying with the idea of going to an in-person clinic for the vision therapy but it costs so much money. Additionally, I have been told by the last doctor that my CI is gone. If a couple of professionals tell me I have it and a couple tell me I don't, I am at a loss at who to trust. So I am still definitely considering paying for a few in-person sessions but I am tempted to wait until I move (which could be 6 months to a year from now) just because I have lost faith in the health care professionals in my state.

                            laur5446 Yes, pain or lack of is a good reference. So is progress report in exercises, as when you improve the numbers and levels of it, then you know youre getting better. I can make you a shared google doc, but you have to get the 3d paper glasses and the brock string for the exercises.

                              martin I do have the glasses and brock string. I just get frustrated with it because it's hard to know if I am doing it all correctly.

                              dev