Can't stand light!

[Sharon]

It's getting so difficult for me to tolerate normal lighting.
I find myself frequently turning the lights off just to give my eyes a rest,
avoiding places with bright lighting and actively searching out darkness.
It definitely affects my eyes (they even get redder with light!) but the light also
seems to make me more fatigued, dizzy and lightheaded.
What is the world can I do about this? Avoid life? Become a vampire?
I'm kind of already doing that.

[Lotus1]

I have trouble with light.

Wear big orange coloured lens glasses to help, FL41 tint for migraine sufferers.

I feel for you....

Lotus1

[Joe S.]

Florescent lights have UV added to make them look white. Th e same is true with LED lights. There are LED bulbs that allow you to select the color. Some of these are found in RV's.

You can get Gels that will filter out the UV. (They are used for theater stage lights).

[Sharon]

Lotus- Thanks, any way to filter out the light with glasses without changing the lens color? Like something they can add to the existing lenses which has no color?

Joe- Which lights do you find are safest? What are these gels exactly?

[AnneNeville]

Gels: https://www.pnta.com/lighting/gels/

I'm not sure how you'd use these with regular lighting fixtures, however. They are made for theatre lights. Very cool!

[Joe S.]

I preferred soft white incandescent. (Hard to find now). I have a compact florescent next to me that I use with a shade to change the color of the light.

A gel is a piece of colored plastic like material that is put in a frame to attach to a theater light so it will change the color of the light. Some dyslexics have found that if they place a gel of a specific color over the page they are trying to read the words stop jumping around. The toneation therapy was originally developed using light with colored gels. Some people will cut the gel material and stick it in their windows as a fake stain glass. 

[Sharon]

Thanks Anne and Joe,
This is all very interesting.
So the general idea is to simply change the color of the lighting?

[cccourt1942]

You're having a time, girl!  Before I get to the light, I didn't have time to reply to your gland/parotid swelling.  A) the fear of lymphoma is always at the forefront of our minds.  B) My first  rheumy said it's really unusual for the SjS patients to develop lymphoma: we see our drs too often, etc.  I can't say calm down about that fear as you didn't actually say that.   I will tell you it is the foremost tht in my head the first year I was dxed.  Also, the massage link sent will save you..and warm compresses.  Re: antibiotic for swelling.  Maybe..if you are lucky to have one on hand.  The antibiotics are used when you have the intense (down to your knees) pain and distension.  Your duct is stopped up...and the bacterial infection (I've been told) is practically instantaneous.

To light: In my last private office and therapy setting, I brought my own lamps in.  The students loved them too.  Of course I had zero idea why my eyes were so sensitive.  It was gradual.  I wore sunglasses almost all the time...my last four or five of glasses were those onto which I can/could clip sunglasses on.  I have varilux lens.  Anyway..in my home for a LONG time...maybe 6 or so years, I kept my plantation shutters closed, and attempted to have no more than one light on in my home at any one time.  Stores which had nothing but fluorescent lights....wait..that can't be true.  ALL stores have fluorescent lighting...so the ones I guess with LESS flrs lighting I avoided.  I was in the hospital once during those years and kept my head covered.  When asked, I would say the lights hurt my eyes.  I was certain I would be taken to the psychiatric wing before I got well! 

And I will never know if it was the restasis which improved my eyes enough for my ophthalmologist comments on the condition of my eyes' surfaces each time he sees me...or if it is Low Dose Prednisone.  Or plaquenil..or supplements...but here's the kicker:  I had the sound sensitivity too.  For Christmas I bought new turntable with blue tooth speakers for myself.  I have almost every record I ever bought.  My house is filled with music, loud music, again.  My children can't believe I can tolerate sound again.  So what caused that?  I don't put Restasis in my ear canal. That's silly...that's just our audio grabber...the auricle!  In your line of work you understand/know/studied anatomy of ear...so you know all that. So Sharon?  Why can I tolerate both of those messed up senses now?  OH...and remember, I had burning tongue when finally dxed with SjS....and had suffered that at least  two years.  Stopped eating practically everything over at least a 6 year period.  Tht it was the tongue: now I believe I lost my taste.  btw: Haven't smelled properly in decades. 

Good luck in controlling light in your life.  The lenses and other hints are worth a try. 
ccc

[Sharon]

Yes C3, my system has been going wild lately.
I don't know if it's due to the Orencia medication messing with me or just
the SJS symptoms getting progressively worse.
The gland swelling eventually subsided on its own (can't explain why) so now
I'm just left with the swelling I get when eating which no doctor can figure out.
No testing (including MRI) could explain this phenomemon.

I did try bringing in a beautiful big lamp with a dimmer into my office. Took all my strength to lug it in.
And...it immediately blew and caused a short-circuit black out with actual steam rising from it!
Just my luck. I have not had the strength to get a new one but It's always on my mind.

Going to stores is another ordeal entirely, not to mention going anywhere under the sun even with sunglasses and protective clothing. I flare within a minute. I even tampered with the flourescent lighting at one of my workplaces...I'm that desperate. I could not even imagine staying at a hospital like you did! I would likely do the same as you. Yes, I'm certain many people think I've gone nuts as well. Many hint at it.

Some of the issues concerning our senses might be due to nerve involvement, though with the eyes it may have to due with the dryness disrupting corneal protection. I have an ear that feels chronically plugged for years now but again all testing shows nothing and hearing test is fine. It's interesting how they come and go with you. Gives me hope some of these symptoms may pass. I know I had metallic taste in my mouth when symptoms first began and it passed after awhile. Yet another symptom no doctor could explain.

I'd feel alot better if I could control at least ONE symptom out of the entire bag.

[Joe S.]

Change color on specific areas of the body.