Hi everyone,
First off, I’m so grateful to have found this forum, and I would like to thank Ryan Smith for letting me know this existed.
I’m a female in my 30s and I reside in California. My symptoms started exactly 3 years ago today... New Year’s Day 2015. I was editing photos from a recent shoot on my laptop and noticed my eyes were feeling tired and strained. I took a short break, and returned to editing. I suddenly felt a very strong muscle spasm above my right eye. I immediately shut the screen and realized I needed to take a longer break from the computer. Since that day, my life has never been the same.
Within the days that followed, I felt an excruciating pain above my right eye, in the crease of the eyelid. Like a severe headache or what felt like a metal claw gripping above and behind my eyeball. I noticed anytime I tried to use my laptop, phone, or look at a television screen that the light bothered me. It seemed much brighter than before, and gave me almost immediate eyestrain. During the same period I also suddenly developed extremely dry eyes. To the point where I had to use artificial tears almost constantly. The light sensitivity was so bad, in fact, that I was unable to drive at night for several months. The red brake lights, especially the newer LED lights were insanely bright and caused me pain. I remember specifically being a passenger in my ex boyfriends car one night. I had dark sunglasses on, my eyes closed, my hands covering the sunglasses, and I could still somehow see that red light!!!! That’s how sensitive my eyes suddenly became.
Since then, I have been to countless optometrists, ophthalmologists, two Neuro-ophthalmologists as well as two neurologists. I have been been told there is absolutely nothing wrong with my eyes after numerous tests. I have been diagnosed with photophobia but told that there’s nothing that can be done as they are unsure of the cause.
Interestingly, my photophobia only applies to blue light from television screens, phone screens, fluorescent lighting. LED lighting, other than brake lights, doesn’t seem to be as offensive as fluorescent lights. I strongly dislike the harsh brightness of LED’s, and I cannot be sure of this, but they don’t seem to trigger migraines or twitching like florescents. I’ve always preferred soft amber light, and have five Himalayan salt lamps. I use Edison bulbs in combination with amber light. I make sure to expose my eyes to the sunlight and not spend too much time in a dark environment as I read that can exacerbate light sensitivity issues. Worth noting: Incandescent, halogen, sunlight does not bother me. And I have very light blue eyes.
The doctors seem to be in agreement that it is not my eyes, but rather my brain’s perception of the light that is the issue. I have purchased at least 15 different pairs of glasses over the past three years, none of which have alleviated the issue. I wear the dark indoor Theraspecs when I have to use my phone. I have an older iPhone SE and keep the Night Shift on at all times, as well as the brightness dim. My laptop, which has become nothing more than a way for me to listen to music, I use the dark google/YouTube themes, flux, as well as a lighting gel taped over the screen. I absolutely cannot tolerate the brightness of other peoples phones (which they forever shove in my face), or any type of television screen. Even in my peripheral vision, the brightness is overwhelming. And even using my phone turned down, with any type of glasses (and I have tried several including polarized sunglasses, fl-41, amber tint, LED blocking glasses etc.), it does help with the brightness, but my eyes still become strained very quickly.
I won’t go into detail as to how devastating this has been to deal with as I’m sure most people here can understand and empathize. I would just like to briefly state that this has added an element of difficulty to my life that has been extremely frustrating to say the least. I used to love enjoying a good movie, watching videos on my laptop, connecting with others on social media, researching, etc. Fluorescent lights bother me terribly and I have been unable to go into any public place that uses fluorescent lighting without a giant sun hat and extremely dark glasses. Not only does it make it hard to see what I’m doing, but I feel like a freak. The FL 41 glasses don’t seem to be dark enough to block the fluorescent light out so I wear super dark polarized sunglasses when I do my grocery shopping. It sucks trying to pick out produce!
The one work around I did find (which was actually recommended to me by a friend who grows pot) were method seven LED growing glasses. Because they are green which is opposite of red on the color spectrum, I was able to use those to drive at night although it was a bit dangerous because everything was quite dark. That aspect of my condition has improved somewhat to the point that I am able to drive at night, although the brake lights definitely still bother me, I deal with it- and don’t usually require the method7 glasses.
I try to use my phone as little as possible, which is difficult in this day and age. It has caused me to feel very alienated from society-which may not be a bad thing, but feeling like it’s difficult to connect to others is. Being introverted and somewhat of a loner, I’ve always preferred to connect with people over the computer, so this has been socially detrimental.
I work as a stand-in on TV shows and movies, and I often come home in excruciating pain because of the lights I have to deal with on set. There aren’t many options as far as other employment. And I love what I do. Most jobs require you to work under fluorescent lighting or use a screen, neither of which I can tolerate. So I continue to do my job with this condition, (which has really become somewhat of a disability) and just hide it the best I can. I do wear my glasses when I can, if anyone asks I just say the lights give me migraines, which is true. I have suffered from migraines since I was 19 years old, but before this happened had absolutely no issues with screens. The dryness has gotten better than it was in the beginning, but when I wake up in the middle of the night, my eyes are bone dry so preservative free refresh drops are always close by. If I use my phone too much, which happens often, I am left with pretty severe pain above my right eye. Both eyes become strained but it’s almost always been only the right eye which has the spasms. I also have bouts of twitching which is so irritating, I’d rather deal with the pain. The only thing that has helped with the twitching is quinine tincture. I discovered quinine was helpful, and rather than drink tonic water which is full of high fructose corn syrup, got the tincture on Amazon. I take a fair amount of supplements for various reasons, worth noting for this condition: lutein with Lutemax (meso-zeaxanthin), magnesium glycinate, butterbur. The lutein may help slightly. I’m currently taking a break from the butterbur, as I’m not sure it was doing anything and I’m already taking so many other things. I took it for about 2-3 months. I’ve been taking magnesium glycinate for years, for muscle relaxation. I take b-2 for migraine prevention, cbd oil for inflammation/migraines.
The neuro-optho I saw towards the beginning of this issue diagnosed me as having an orbicularis muscle spasm, which was treated with Botox injections above my right eyelid. I had had the pain constantly for four months, and it took another month before the Botox worked, but the pain finally, temporarily went away. Maybe for a few months? Since then I have lived with it chronically, I have good days and bad days, more bad than good and the pain can sometimes last 4 to5 days. Cyclobenzaprine helps, but I can only take it occasionally as my body becomes immune to it. The doctors wanted me to try amitriptyline as it can apparently affect the parts of the brain that deal with light sensing. I was hesitant as I hate taking pharmaceuticals, (especially old school antidepressants) but when desperate I did try quarter doses and noticed maybe a slight improvement (but nothing miraculous where it actually enabled me to look at the screen) however the side effects were unappealing so I stopped it. The neurologist I saw several months ago thinks the issue is caused by inflammation. A few months prior to the symptoms starting, I was very sick with a respiratory virus for a little over a month. The neurologist I saw claims that he has had other patients who also developed similar symptoms about a month or so after having a respiratory virus. He thinks I’m dealing with inflammation. I asked him if the information was in my brain, he responded that the information was in my blood. Curiously, all bloodwork which would show signs of inflammation is normal. Even so, I have been doing a very strict auto immune Paleo diet, so far, no change. Every time I have some hope that I have gotten closer to the root cause, I feel I’m back at square one. Obviously I don’t want to mask the symptoms with a pharmaceutical, or wear glasses that hardly take the edge off the strain, or take an insane amount of supplements. And while the diet I’m eating is surely healthy, having to prepare almost every meal from scratch is getting old quickly. I was already gluten/casein free, but Paleo AIP is very difficult- especially while at work.
Workarounds are great if they help, I’ve seen a lot of talk about several different types of monitors and I can only begin to fathom the difficulty of trying to figure out if any of these devices would work for me. I use the talk text and look away from the phone, but because I am somewhat of a detail oriented perfectionist, I will have to go back over this and fix the majority of the typos. But if I miss some, surely you will understand why. I know this has become quite lengthy and I’m sure I’ve left some information out.
After three years of living with this, I am so over it and just want my life back. I am desperately pleading with any of you who read this, if you have any suggestions as far as what could be causing this, or what may help.. please let me know. Thank you so much for taking the time to read this, I look forward to future discussions, and it’s comforting to know that I am not alone. 
I now need a SERIOUS break from the phone. 
