Light sensativity

[Jsol]

HiI have scleroderma and raynauds but for 6 years previous (and currently) to that diagnosis I suffered with vestibular and pain migraines and since cannot be under florescent or LED lights. These lights cause me to be very sick. I wonder if anyone else suffers with such chronic light sensitivity from these lights? I am fine under old style incandescent bulbs.

[Krazykat26]

Yes I do. I don't have scleroderma..I have lupus and I'm extremely light sensitive to both sunshine n flourescent indoor lighting. I went into a supermarket last week for the first time in ages n even though I was covered up with long sleeves n a wide brimmed hat n sunglasses I could only handle fifteen minutes n had to get out of there!! Hospital lighting is the same. I've had to change all lightbulbs at home. When we moved into our current place there was a flourescent tube in the kitchen without a cover on it n I flared really badly with lupus until we realised it was the lighting!! I had to have a lamp in there until we could get some spotlights with warm light bulbs.If u go onto the lupus UK website n scroll down to Eclipse you will find out all about photosensitivity. I don't suffer with migraines as a rule but when I'm exposed to artificial light I feel nauseous, hot, head thumps, n I feel like I'm gonna pass out..then I start to feel shaky n faint so I have to get out.

You're not alone Jsol..light sensitivity is a very real thing 🤗💜🌈xx

[Jsol in reply to Krazykat26]

Hi. I'm sorry you suffer with Lupus. The lights are just a life changer for me. I'm so very restricted even with hat and migraine glasses. There seems to be no link for this amd scleroderma so I expect I'm just light sensitive too. Thanks for the reply and I hope one day we cam be light tolerant.

[hunkyd0ry]

Hi all,

I am in this forum as I am a patient too. But while I cannot report any photosensitivity myself, I am following this thread with great interest as I am a lighting designer by profession.

About 2 weeks ago I first heard of this when going for one of my hospital check-up's and found the department desk in almost darkness. Doing the lighting design for these kind of places and always having to make sure to achieve certain lighting levels to carry out certain tasks I was surprised to find people working in this dim reception, so I ended up having a chat with them. Two of the female staff did complain about their migraines being triggered by the lights there!

Less than 2 weeks later I find this post here!

This is really not anything I have come across before so I will be following this post and its comments and hope to find out more. Hopefully by understanding this subject better I could make some kind of contribution by bringing some awareness into the world of professionals that do design lighting in your workplaces.

Would you be willing to help me by answering a few questions for me?

I would much appreciate it!

[hunkyd0ry in reply to hunkyd0ry]

lupusuk.org.uk/eclipse/a-gu...

[Krazykat26 in reply to hunkyd0ry]

Would you join the lupus UK site n post this on there? I can guarantee that you'll get lots of replies as approx 60% of lupus patients experience photosensitivity 💜🌈 xx

[Jsol in reply to hunkyd0ry]

Hi.Absolutely. Lights are what stop me from living my life! I'm fine in old style incandescent lights in my home but anything else makes,me very sick. I use to work as a research scientist in labs but had to stop due to my chronic aversion to lights that started suddenly 7 years ago. Bare bulbs are hell and everywhere. LEDS flash so often a second it's impossible for me to stand up properly when I'm near them. It doesn't help that these lights are at different levels of brightness in different places. Headlights are another.

Because I have many hospital visits and I have to wear migraine glasses and a cap. Every nurse I speak too says they get headaches under lights all day. Every person!

Happy to answer any questions. I just want old school lights back ha!.

[hunkyd0ry]

Hello again. I have put a questionnaire up onto Surveymonkey, the link to which is here:

surveymonkey.co.uk/r/98GVBQW

I would be very happy if you could help me with my research about lighting sensitivity by answering the 9 questions.

Thank you so much!