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Re: Cataplexy & Fluorescent Lighting

Posted by eBarbieDoll on January 20, 2004 at 06:49:45:

In Reply to: Cataplexy & Fluorescent Lighting posted by Javacat2000 on January 19, 2004 at 17:30:55:

I had febrile convulsions at age 2 1/2. never knew why, and within 2 years I was cataplectic. This was in 1964. The doctor mixed up dexedrine in his office for me and it was like a suspension I took by the spoonful. I missed 50 out of 119 days of kindergarten, and that ended up to be my best attendance for the rest of my school years. (this was way before home-schooling was acceptable.)They didn't use the word Narcolepsy back then like they do now. All I knew was that I was Cataplectic.
by 7th grade, 1975 I was disabled. at first they thot it was mono, then rheumatic fever, and finally after 3 years of being more in than out of hospitals I was diagnosed with 'sero-negative' SLE or Lupus. One of the distinguishing features that got me the DX of Lupus was photosensitivity to sunlight and flourescent lighting.
I was put on prednisone for the next 20 yrs. In the whole space of that time I only once had a positive blood test that is indicative for SLE(there is no blood test to determine it--only a profile and history of symptoms). I remain extremely photosensitive. But I have always questioned the DX of Lupus. It is too convenient when I am not having any 'symptoms' to conclude I am in remission. The primary symptoms are EDS, multiple inflammations(of anything that can be inflamed), generalized muscle weakness with no perceived antagonist and photosensitivity. sound familliar?
when I am in flourescent lighting I feel as if the energy is being sucked out of me thru my head, my hands start to itch and burn and I develope two cherry red spots of color on my cheeks that look like clown make-up. If I stay in the lighting too long, I have a total body collapse. This is one of the reasons why I was determined to be Disabled by SSA---back in 1986 there was no ADA and work places were not required to use UV shielding for a photosensitive employee. I am worse when the lighting is low and close to me, but I also have problems in the warehouse-type stores that use very bright lighting. I get mentally confused, break out in a sweat, and get weaker and weaker. Afterwards I have a raging headache. I can feel some relief immediately if the lights are turned off, but it takes days sometimes to get rid of the 'hangover' if it was a particularly bad one.
eBarbieDoll

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