• Introduction

  • Blue light photophobia, eyestrain, muscle spasms, pain, twitching

reaganry

Indeed- I'm feeling hopeful about the production monitor being something I may be able to tolerate long enough to (gasp!).... watch something! Looking forward to getting the technical specs of the ones they use on set. Then promptly buying one, assuming there's a good return policy on it 😉

The quinine I take is an alcohol free tincture (Secrets of the Tribe brand). The label says 'Organic Quinine (cinchona officianalis) dried bark. So I'm thinking it's not quite the same as the Qualaquin sulfate capsules. I'm hoping not, because I take 400-800 mg of magnesium glycinate per day. I only use the quinine tincture when I'm having twitching, which is infrequent (every few months, for a few days to a week).

It's weird that most of you guys aren't bothered by florescents, yet I am extremely sensitive to them. Are TV's insanely bright to most of you as well? For me, the brightness is practically blinding. I can only look at a television for a few seconds. So it's the brightness, followed by the strain, followed by the muscle pain. I'm also wondering if anyone else here has had muscle spasms in the eyelid due to eyestrain. I have the pain almost daily, to varying degrees depending on how good I've been about staying off my phone.

It's interesting to me you brought up the casein thing. I don't know if that was random or in response to something I said. (It's hard for me to go back over everything that has been written, for obvious reasons) so forgive me if I repeat myself or overlook things. Anyway, I'm sensitive to gluten and casein, but I can also tolerate goat/sheep milk. Grass fed butter isn't a problem for me either, as it only contains A1 casein in microscopic amounts. I'm currently off all dairy except grass fed ghee because I'm doing this low inflammation diet.

Just did the color blindness test. It was normal. Sigh. Always hoping for that "a-ha!" moment...

      Blair It's weird that most of you guys aren't bothered by florescents.

      I was. In fact back in September 2011 (when I first noticed this issue) I associated it with lights instead of screens.

        MagnuM

        I'd be interested to see if the 3GS works for me, if I can find one online and it's returnable. What phone are you currently using?

        The monitors they have at work are actually flat screens, not boxy at all. The picture is very nice, not too bright. I promise I'll let you guys know exactly what they are as soon as I find out. I never look at them for more than a few minutes, but that's a few minutes more than I can tolerate a "regular" tv, so I'm hopeful it may be the workaround for me and for some of you as well! 🙂

        I did try watching an old school box tv when I was at at Irlen center doing testing. It still bothered my eyes/brain. And every color combination of Irlen lenses proved unhelpful.

            Blair Wow, the 3GS is really old. May not be able to run too much these days aside from some basic Safari web browsing and SMS text messages. I used the iPhone 5, which gave me some mild symptoms, but not too bad at low brightness with NightShift enabled. Phones are usually used for quick checks versus long sessions anyway. I'm using the iPhone 6S+ currently with similar issues as the 5, but I think the larger screen helps. I have Nightshift enabled at all times on it, and the brightness is low, and I haven't had too many problems I link directly to the phone's display. Thankfully it's a non-factor for me in most cases.

            It would be helpful to find out what monitors at work are tolerable for you. If needed, maybe ask some techie there if he can even get model numbers for you too! Getting the model numbers would get you all the technical specs that go with it. You might be able to find a pattern of "eye safe displays"

            The first ophthalmologist I saw back in late 2013 suggested doing an Irlen Center screening, which I did back in April 2014 if I remember correctly. After a couple hour session, they did suggest I had Irlen Syndrome to some degree. When I returned to try different lenses though, I couldn't seem to find any lenses that helped to a significant degree over placebo, mind you, I was doing my tests against the printed word instead of the problematic displays that I'm not able to handle.

            Irlen Syndrome is a bit controversial, but I remember the vice president's son of our company worked as a summer student once and always wore these blue-tinted glasses. I spoke to the VP once and he said the glasses were essentially life-changing for him, because he had a lot of trouble in school with reading and such, and the tinted glasses were the smoking gun.

            The theory behind Irlen Syndrome is over-sensitivity of the optic nerve from specific wavelengths of light. The tinted glasses try to filter out that "offensive" light wavelength. That's at least how it was described to me.

              Harrison further blood tests some markers show that my immune system is permanently running and fighting against something

              Could this be auto-immune, e.g., it's attacking healthy cells (maybe in the eyes or brain)?

                  Blair I'm also wondering if anyone else here has had muscle spasms in the eyelid due to eyestrain.

                  I do have that with certain light sources, but the twitching is below the eye.

                    A lot of us were/are sensitive to fluorescents, especially the newer "high intensity" "full spectrum" variety. But the bigger problem is the screens. With a good screen and a visor on my head to block direct view of the offensive lights, I can exist quite comfortably for an entire workday under those lights. When I first had the symptoms I thought the lights were the trigger and literally worked out of a closet in my office for a couple months. In the end, they were only exacerbating the existing issue.

                      Gurm

                      What do you Mean with „visor“ ?

                      We have Dell p2213 Monitors at work — that are okay with Blue blocking Glasses , but the bright white lights fluorecents Kills me 😩

                        Gurm

                        There are actually a few scenarios where infection does persist chronically. The most widespread is Toxoplasmosis, its an intracellular parasite that favours brain tissue. In humans, once contracted it persists for life. Around 50% of the world's population is infected with this parasite, those it varies a lot by region.

                          ryans

                          Yeah. The problemt could be an auto-immune, but it is not sure. Like the Chronic fatigue syndrome where doctors suppose that also a currently not known auto immune disease is the root cause of the problem.

                          However it is clear that the problem is not a hashimoto or other kind of more known auto immune disease.

                            Blair Off topic: Yes you're right, I'm listening to metal mostly, and playing on V shaped pointy guitars 😃 I'm not in a band though.

                                Hello @Blair ,
                                some of your symptoms are very similar to my ones.
                                I have had eyes strain problem since 2013, near 2015 I began to notices discomfort with non-natural light and nervous tick/spasm (especially on right eye). I also had problems with trigeminal nerve that was injured 17 year ago. On summer of 2016 I became extremely sensitive even for natural light (strong dry eye syndrome) and on Autumn I got of bunch neurological problems, tinnitus and sleep problems.

                                I visited several ophthalmologist and neurologist. And in shortly I found one, that said very simple words:
                                "You have sitting job, don't do any additional physical exercices, don't walk enough. That causes my blood vessel to degraded. And have a lot of stresses that causes same for vessels."

                                After that I started to change my lifestyle.
                                I started with swimming (it was start of winter 2016/2017), its helps me a bit for a day or two.
                                With warm weather (end of winter 2017) i started to running, and it's add some freshness to my mind (with reliefe for several days).
                                In May I started riding on bicycle and suddenly in a month my eye dry problem significally decreased (but I have it in decreased state for a year from this moment).

                                At the end of 2017 summer I noticed that there is no further improvements in my state regardless of physical activity. And I began to experiment with relaxation practices (massage, yoga-nydra, R.E.S.E.T jaw therapy), yoga and breathe meditation. Maybe after a month of meditation I got some small improvements in my state. Further on one of R.E.S.E.T session I noticed some relief in head muscles (on right side) and start pay more attention for this area (head and neck). From that time I have noticed a lot of spontaneously activity in muscles (or maybe vessels) on my right head side.
                                But after that my practice become irregular for some time.

                                There should I also say that I tried to make some relaxation practices on winter 2016/2017, especially breathe meditation and yoga-nydra practice, but this practices were biased: sometimes I got better, but sometimes totally awful and I stopped do it for that time. I don't know how it could be explained, but maybe relaxation with bad blood vessels is not good idea. On Summer/Autumn 2017 my vessels became stonger.

                                At winter 2017/2018 I also noticed that long walks are also very helpful for my state (I walked about 10-15 km. and it was huge for me). Seems on summer 2018 my eyes spasm were ended.
                                On summer 2018 I passed formal meditation course and from that time I have practiced more regularly. And with practice I began to notice a lot of tension in my neck, especially on right side.
                                Seems from Summer/Autumn 2018 I became more robust for some led device/light (but not all).

                                Now I'm running, walking, meditating and riding on bicycle in warm weather. My state is much better that two years ago.

                                And as conclusion, try to pay attention for this areas and define how it suitable for you:
                                1. A lot of stress
                                2. Sitting job and restricted physical activity
                                3. Overtensioned head/neck/shoulders muscles

                                I'm not sure that this path is suited for you or anyone else. But if you want try you should find several physical activities that decreases your problem and start to do them more and more regularly from simplest phase to more complex. With time when you notice stopping in progress in your state it worth to switch to or add other ones.

                                @Blair Have you asked for an EEG while using a phone or computer? Could show abnormal activity that neurologists typically treat with drugs. I don't know if anticonvulsants would be at all helpful. I know you aren't keen on taking them (no one is) because of possible side effects, but some people tolerate the drugs well. Could be more beneficial than harm.

                                  Gurm I also wear a nightguard because I clench at night (what can I say, I'm a pretty intense person, ha). My migraines are ALWAYS located in the exact same spot, my left temple area. I've also experienced tinnitus issues in my left ear. For years I had a "rushing" sound similar to when you have water in your ear. It was sensitive to vibrations to the point I always slept on my left side. I used to be able to tell people a train was coming before the horn sounded because my ear would pick up on the vibration. I finally saw an ear specialist who diagnosed me with Stapedial Myoclonus and did a 'middle ear exploration with section of stapedial tensor tympany tendon', basically he used a laser to cut a piece inside my ear. It helped the sound thankfully. i do notice when I shower that the water running over that ear is about 3000x louder than the other after the surgery. A minor annoyance, comparatively.

                                  I also notice at times that there seems to generally be a lot of pressure in my skull. If I'm bending or moving a certain way, I hear and feel this enormous pressure in my head.

                                  I agree it's probably unrelated to the light sensitivity, as the ear thing started when I was 17, the surgery I was in my early 20's, TMJ stuff maybe mid 20's. Pressure in head maybe past 5 years. MRI is normal, though.

                                  I used to have anxiety attacks on the regular as well. They started when I was 19 and continued into my 30's. It's only been the last 3 years that they've gone for the most part. I attribute most of it to removing casein from my diet. It was actually only a matter of months after going off dairy that the light sensitivity started. Even though I rarely get panic attacks anymore, the generalized constant stress and anxiety of having an unknown brain issue that affects my life and causes me pain on a daily basis is quite... enough.

                                  I'm so glad that you have improved.... I know it's not as much as you would like and I feel the same way. I try to be thankful that I can drive at night now and use my screen provided I wear the right glasses, adjust settings to make it more tolerable, take breaks etc. The taking breaks thing SUCKS. I like to zone in front of my laptop for hours. I'm sure we all do. Sometimes I can get away with using it longer than others. The dark google background helps a lot. But I almost always pay the price with strain and that damn muscle pain.

                                  I have to shop at a variety of stores because of my diet. Trader Joe's, Whole Foods and Sprouts all have atrocious flourescents. I recently discovered the Ralph's down the street has some kind of can lighting above the produce area only. They may be LED's but they don't bother me too much, so I've been shopping for organic produce there.

                                  Your last statement really resonates. Right there with you.

                                  • Gurm replied to this.

                                      Blair so I wonder if it is dietary with you - I have to read back through this but have we already covered lutein/zeaxanthin/astaxanthin supplementation? That really helps for me. But the fact that the symptoms began shortly after cessation of dairy indicates... something. I wish there were a smoking gun for you... or for me - either a causative trigger or an actual cause - but there simply isn't. "A year after <blah> happened, <ugh> also happened" isn't really any kind of causation. It's barely correlation, much as we want to try to find a link. But in your case "shortly after" is a pretty big indicator. I wonder if there's something else at play there.

                                      I need to go back to my eye doctor, and see if i can somehow have him check me strained and un-strained. Like, maybe bring a Macbook with me, have him check my eyes and then spend 30 minutes forcing myself to read small text on the Mac screen, and then check my eyes again...

                                          tfouto THANK YOU!!! So much!!! This is really helpful/valuable information. All I had found about lowering homocysteine was the folic acid/b6/b12 thing. Research is difficult for me, though.

                                          I apologize for the delay in responding. My previous reply to Gurm was 90% complete days ago, so I just had to finish it up. The past few days have been HELL. My job started back up but unfortunately I was only able to work one day. To make a long story short, (which isn't usually my specialty), I started feeling extremely dizzy, weak and just generally horrible. Ended up at urgent care, had a temp of 104.7 which wasn't going down with meds, got sent to ER, had to have a spinal tap as Dr. suspected meningitis (it was negative). Had abnormal EKG's. They wanted to admit me there but because I have medi-cal I had to get transferred via ambulance to a sub-par hospital in the ghetto, and that's where I've been for days. I have the flu and mycoplasma pneumonia. Taking some antibiotic called Levaquin, as well as tamiflu. My body is really fighting right now. I only weigh around 100 lbs but the meds are making me sick so I think I've lost weight. Not sure when I'll be well enough to go back to work. I think I'm going to stop the levaquin. It's making me extremely dizzy, not to mention killing all the good bacteria in my gut.

                                          Anyway- it's really interesting about the choline thing because when I was using cron-o-meter to track my meals/supplements every day, the one thing I would consistently find I seem to be deficient in is choline! I have been a supplement person for a while now, and had considered getting it, but I stopped using the app as it was just too much to deal with (especially with this stupid condition) and it kind of fell to the wayside. But now that I know choline can convert homocycsteine into methoinine I'm really going to focus on this. I do have some betaine HCL/gentian bitters I randomly take before protein heavy meals. I normally take high quality fish or krill oil for my omega's. I'm wary of taking anything that can raise my B12 or B6 at this point because they're both so high. I don't understand it. When I tried taking normal amounts of B12, B6 and folate they all skyrocketed on labs. I haven't taken any of them for months now, and my folate has normalized, but as of my last lab (12-14-18) my B12 was 1140 (ref range 243-894 )and my B6 was 92.4! (ref 2.1-21.7). I just don't understand. The Dr's never seem concerned and say it's water soluble so you just excrete it in urine. Okay. Well, if I was fasting when I did the test, where is the excess coming from?

                                          Again I do thank you so much for finding the info about choline and homecysteine for me. I'll try to read the articles or have them printed as soon as I can.

                                            Gurm Yes, I take 40 mg. lutein with 4 mg. zeaxanthin (minimum 1 mg mesozeaxanthin) every morning. I have astaxanthin as well and have taken it off and on. Not sure any of it does much for me, but it's supposed to block blue light, so I think it's an important supplement.

                                            It could just be coincidental that this all happened a few months after stopping dairy. As you said, it's hard to speculate. I do think the respiratory virus I had in October '14 (symptoms started late December 2014 and the spasm on Jan 1 2015) could have been the trigger, as my Neurologist theorizes. It's doubtful any of us will ever know for sure the why, which is difficult to accept but I'm trying. I guess I just need to focus on ways to live with it. I know we all are...

                                            Good idea about getting examined strained/unstrained. I'd like to find better doctors who are willing to work with me. That's definitely not happening with Medi-Cal.

                                              ryans This is a great idea, I just need better insurance I guess. Yeah, I hate pharmaceuticals but I'd try almost anything at this point.

                                                  Blair Really, try to find proper optometrist. Two other people here already confirmed that they have heterophoria. Hope its as simple as that (but still can be extremely painful and debilitating), if not, I hope you find your culprit.

                                                      dev