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Blind and Visually Impaired Community

Last sync: 1y ago
8
Doctor with recent-onset photophobia wanting to be helpful with helpful tech tips for light sensitivity (self.Blind)
submitted 1d ago by drpsychmd
Hello all - I’m new to the community but have been very thankful of its existence and recent advocacy efforts. I’m an American psychiatrist and professor who recently experienced sudden-onset photophobia with odd neurological symptoms and significant functional impairment. It’s been months of seeing many doctors in several specialties without a clear answer, as many of you I’m sure have experienced. I share this experience coming from a doctor with an MD - doctors need doctors too, and sometimes none of us know what’s going on.

My condition has been fluctuating and my ability to tolerate screens has been limited. I’ve had to take a lot of time off work. I’ve been spending a lot of my free time trying to figure out solutions for this so I can see my patients, as a lot of my work involves staring at a computer screen seeing patients, reading chart notes, writing notes, etc. I’ve also been unable to drive and a lot of my work requires me to go into the office.

What has been so surprising to me - there have been many things but I will list a few - is the lack of practical information out there for people with photophobia and light sensitivity, let alone anyone experiencing visual impairment of any kind, and also the amount of false or non-evidence based information. I have also noticed that not a lot of doctors speak publicly about their experiences with medical conditions - this is not new to me unfortunately.

For me, I’ve found my older LCD iPad screen to be the most tolerable. I can’t tolerate any computer screens, and I cannot tolerate newer mini LED backlit iPad Pro models. I’ve compiled shortcuts and tips for using an iPad as your phone, tablet and computer, and I’d like to share if that’d be helpful to folks. There are also other things regarding light, color, motion, among other things that may be known but may not be and may be useful to share. A lot of this has been trial and error on my part. I’ve also been trying to read up on the medical literature when I am capable and become acquainted with evidence-based methods, or lack thereof, as well as Reddit tech subreddits and tech websites that focus on iPad shortcuts and accessibility features.

I decided to make this post because I didn’t want my efforts to just benefit me - I want to help others, and that would motivate me honestly. I’d like to help as a medical professional, not to provide medical advice, but to provide what I’ve learned given my background and training. I’m a tech enthusiast but I definitely don’t have formal training in programming.

As I mentioned, I’m not well-connected to the community and I’m not an ophthalmologist, so I’m wondering if (1) anyone here would benefit from me publicizing my findings or helpful tips as above, (2) are there any other forums that would be alternative or better places to reach people in need? Thanks in advance.
razzretina 3 points 1d ago
Something that may help you is putting everything on dark mode. If you can’t read white text on a black background there are other options. There are dark mode extensions for most web browsers too. With ipad and iPhone you can also access screen brightness in the control panel. I turn my brightness up and down all day and have my phone set to emit warm light at sunset (called Night Shift). There are also a ton of color options in Accessibility (became very familiar with these thanks to migraines). I’m skipping a lot of details here, this is a big topic.

There are plastic overlays you can put over paper to reduce that white glare and they come in tons of colors. Some people put them on computer screens too.

Try out different kinds of sunglasses and see if you can get comfortable with having a pair of indoor shades (as well as a darker outdoor pair if you need it). A good hat is also very helpful; there’s no shame in a bucket or cowboy hat if it’s got the light blocking coverage you need (you can get a custom made hat in some places even). I find baseball caps don’t cut it for overhead glare reduction but they might work for you.

Try lighting in your office that’s in corners or around the edges instead of directly overhead. Christmas lights can be for all year or you can get strings of smart lights that are more adjustable.

Reducing white wall space by putting up pictures and posters can help a lot too.

A lot of dealing with photosensitivity is little cheap tricks to reduce glare and change where the light is coming from.
drpsychmd [OP] 3 points 1d ago
Thanks for your advice and feedback. I really appreciate it. I’ve developed a few shortcuts for the iPhone and iPad that make adjusting accessibility settings and screen brightness easier. I’ve found green-yellow light to be most tolerable on my eyes/head, rather than the red tint of night shift, but I manually adjust this in settings. I definitely benefit from dark mode but a lot of apps and websites aren’t compatible I’ve found.

My partner found me mountaineering/glacier sunglasses which have been a lifesaver. They are yellow/brown-tinted, polarized, and block the top and sides with guards. I’m waiting on my prescription pair to be delivered. When I tried them on at REI, my life changed drastically. I’d look up Julbo sunglasses if unfamiliar.

I wear a bucket hat most of the time except for work :) I don’t have any shame. Thanks for your notes regarding white walls, I’ll pay more attention to that, thanks.
razzretina 1 points 15h ago
There's an extension for iPhone and iPad called Dark Reader that will force a dark theme on almost every website. It's been a life saver! And if you run into any apps that refuse to have a dark mode, in Accessibility you can do custom settings per app and for those I force Smart Invert. Even did that to my email because it kept using the white background.

Yes, bucket hats for life haha! I don't care how they look, I was so excited when I first discovered how much coverage they have, they're great. I got a few different ones to match my outfits.
Anianna 3 points 1d ago
I have albinism, which is clinically a different condition than albino, but related. It comes with some pretty serious photosensitivity. My eyes let in too much light, which is fun at night because my kids can't see me coming in low light when I can still see them pretty well, but it's not so much fun in the day or times like dusk when there is significant light scatter even thought it's not bright. I also have a lot of trouble driving at night in cities and suburbs where light pollution feels bewildering and disorienting to me.

You might benefit from a blue light monitor filter or anti-glare filter for the devices you have more trouble with. You probably won't benefit from the auto-adjusting brightness features on some devices because they'll never get it quite right. Set your screen brightness low and adjust as needed. Another user mentioned using dark mode whenever possible, which is excellent advice, though it can be startling when you go from dark mode to a site or app that doesn't support it, so be aware of that.

I get agitated in the warm light spectrum and am most comfortable at 5,000K or higher. I've changed most of the lights in my house since coming to realize this and it's really helped me. It's important (for me, at least) to really do the research about any light device I want to make sure it's within the cool spectrum range and a lot of lights designed for residential use are in the warm spectrum range. I also make sure most lights in my house are dimmable so I can set them to my preferred brightness (getting smart lights or smart bulbs really helps with all of this because they can be set to whatever colors make you comfortable and you can adjust how much light they put out easily in an app - set it and forget it). During the day, I prefer muted sunlight and don't turn lights on.

I have a nightlight that comes on automatically in the dark for my bathroom. I cannot stand to turn a light on at night and the nightlight is plenty for me to see with to use the bathroom. If you're not as sensitive as me, try two nightlights or have smart bulbs that you can set to a much dimmer setting at night (if you use something like Alexa, you can set timers on your smart bulbs or lamps so that they do these things automatically).

If you wear prescription glasses and need sunglasses due to photosensitivity, there are glasses that have magnets on them so you can add sunglasses to your prescription lenses. This makes your shades look more like regular glasses with darker lenses and I get asked less frequently to remove them indoors like I did sunglasses that looked more like sunglasses. Public places can be really bright and I have social anxiety, so this helps on both of those fronts for me.

You may need multiple different sunglasses, such as lighter ones for indoors and polarized darker ones for outdoors. Always get anti-glare coating, as well. If you use prescription glasses, get anti-glare coating on those to further assist with screens. If you don't wear prescription glasses, you can get anti-glare glasses without a prescription to wear when you're using screens.

I do not recommend transitioning lenses unless they've made significant improvements in the last decade. They have difficulty going dark in situations where you really need them to like in a car and can take too long to adjust in general. It's much better, imo, to just change your glasses or add or remove sunglasses.

If you have to work with overhead lights, see if you can wear a brimmed hat. I prefer a boonie hat because the brim goes all the way around and I'm not going to get a burst of light in my periphery if I turn my head just so like with a ball cap. In a work situation, you may need to request it as an accommodation for disability.

I also wear my boonie in stores where the overhead light can be glaring and I certainly wear it outside, not only to mute sunlight in my eyes, but also to protect my obnoxiously fair skin.

If your eyes feel strained from too much light, find a darker place to chill with your eyes closed for a while. When you're light sensitive, too much light can trigger a migraine, so pay attention to what your eyes and head are telling you. For me, being out in the sun or exposed to excessive indoor light can make me feel sick, as well.

E-reader screens can be much easier to tolerate, but, of course, their use is very limited. I prefer to write on a digital notebook that uses e-ink technology as it doesn't have the glare of paper and I can control the backlight (some, like the Remarkable don't have a backlight, but the screen doesn't glare either way).

Best wishes on your journey adapting to the glaring world. I hope you can find answers.
TK_Sleepytime 2 points 1d ago
I think it's always helpful to share what we've learned. Yes, some of us may know it already but people are suddenly afflicted with vision issues and looking for answers and tips at all times. This sub also gets frequent traffic from family and caregivers who are looking for tips to help accommodate others.

I also have photophobia. My biggest surprise has been that ophthalmologists don't really factor it in when reporting what you can see. Yes my glasses correct to 20/80 vision in my one eye, but not if the sun is out, or the floor is reflective, or the screen is too bright, or....
drpsychmd [OP] 2 points 1d ago
Sorry you also struggle with light sensitivity and vision problems. I’ve also learned a lot about ophthalmologists during this journey - which is pretty interesting, because I knew colleagues who became ophthalmologists, and ophthalmologists also had a certain image at least in medical school and among doctors. I think for me it has been most interesting, and also frustrating but also interesting, learning how vision problems are triaged between optometrists and ophthalmologists, and sub-specialists.
drpengu1120 1 points 1d ago
I just wanted to say I appreciate this thread. I have been dealing with worse photophobia the last year (or at least my ability to tolerate it got worse after I was pregnant in that rather than it just being painful, it triggers migraines).
drpsychmd [OP] 1 points 1d ago
Thanks for your comment. I’m sorry you’re dealing with photophobia. It’s been triggering migraines for me too - which has somehow been confusing to all of my doctors. I’ve found being on migraine prevention medication to be really helpful with the migraine symptoms - it took a while for me to realize and believe this myself honestly. My migraines are very atypical and I was initially skeptical and pretty pessimistic. I’m not doing super great but I think the migraine symptoms are improving. I hope your recovery has been an overall upward trajectory as well. Wish you the best.
drpengu1120 1 points 16h ago
Thanks! I’m still trying to figure out what’s going on. I say migraine but I don’t know if it’s that or something else. I just get weird sensory stuff that lasts a few days. Seeing a migraine specialist soon.
PaintyBrooke 1 points 20h ago
I find that overhead lighting in low ceilings, lights near eye-level, and white surfaces are more difficult for me. I’ve painted my studio darker gray and put a black tablecloth on my work table, which cuts down on light reflection. I’m cultivating a collection of fabulous broad-brimmed hats.

At a recent doctor’s appointment he said that I’m a poor surgical risk and recommended I “control the light” in my surroundings, which is infuriatingly impossible if I’m not at home. He did mention that there is a kind of sunglasses that don’t shift color, just contrast, and they might help me. I forgot what they’re called.
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