Photosensitivity

[Stm252]

Are other folks photosensitive? How do you manage it if you want to travel and be out with your family?

[OpsDave70]

I sure do have photosensitivity. Bright light - or even “normal” light - actually activates my migraines, which I have almost continually. I tried Botox injections into my scalp for a year, but the side effects from the shots were becoming too severe to warrant taking the risk so i stopped.

To answer your question, cloudy, rainy days are my friend. The darker, the better. When I am with friends and family, I try not to sit facing a window of the sun is out or there is only light cloud cover. With indoor lighting, there is not much I can do except lay down for a while during the afternoon if it is practical. I did get a blue-light filter on my eyeglasses, and I am told that the filter is supposed to help. The filter (a coating on the lens) certainly hasn’t hurt, but I don’t think it has helped much either. For women, I would recommend wearing hair with fluffy bangs to act as a little hat over the eyes. Men with curly hair might benefit from the hair-hat-effect as well.

[UKToronto in reply to OpsDave70]

Can I just say that your hair-hat comment made me laugh out loud?

You are funny OpsDave70!

Thank you for putting a little laughter into my day!

UK

[OpsDave70 in reply to UKToronto]

People have no idea about the things we have to do to function. It can get pretty crazy and unorthodox sometimes!

[UKToronto in reply to OpsDave70]

Very true!

UK

[Frustrated2]

Right now I’m super Light sensitive. My eye doctor recommended getting prescription polarized amber tinted sunglasses to wear all the time. I am currently having to wear them even indoors. Hoping this will get better once I get on medication.

[Alex97]

I have terrible problems with the light atm. Outside sun light or indoor light, but I have been having problems with my eyes since last august where the front layer of skin (epithelium) on my eyeballs keeps peeling away. Would be interested if anyone has any advise other than wearing sunglasses everywhere, including at home. Even watching tv causes problems.

[Stm252]

Thank you all for your feedback!

[sian35]

Sungalsses are a best friend. I go for as dark as possible. Also a sun hat. Looks a bit daft sometimes but hey ho!

[SCMW]

Hi, I am photo sensitive, I’ve always been unable to tolerate flashes from cameras or bright light & used sunglasses a lot. I’ve found one of my biggest problems was with indoor lighting. In the office, new bright cool white led lighting & fluorescent lights caused a marked increase in virtually daily migraines. I purchased vista mesh glasses made by norville & found these helped. The best lights are incandescent. So I have warm light led lights at home but mostly lamp lit. Sunglasses are still used for bright light. I have actually found a marked decrease in headaches with use of colchicine. I didn’t find a huge amount on photosensitivity with behcets & don’t have uveitis currently but this has been an issue for me. If at work, this should be a reasonable adjustment & disability legislation should apply. Hope that helps.

[UKToronto]

Sunglasses!

Dark tint.

Reflective lenses.

And lots of them!

Here. There. Everywhere!

One in the car.

Forget that. Make it one in each car.

One in the bag.

One at work.

One at home.

And another one, you know, just for backup.

Sunglasses!

UK

[LostOH]

Yes absolutely on the sunglasses. Just an added safety/caution. I got so bad that I was wearing sunglasses in my work as a nurse on night shift! It was around that time I learned I had an eye stroke. More specifically retinal vasculitis and BRAO. If you notice an increase in light sensitivity it could be a warning and worth having your eyes checked out thoroughly.

[Stm252]

After all your posts I read up on PsA. Sounds so much like what I am dealing with (just no scabs or the dermatologic issues). It also makes me feel a bit hopeful that there is not a ton of bloodwork needing for proof. May actually be a diagnostic clue here.