Any other photosensitive people out there?

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Faunts
Regular Member


Date Joined Apr 2011
Total Posts : 48
   Posted 4/15/2011 3:12 AM (GMT -7)   
Hi, I have not met another photosensitive epileptic person so feeling depressed about it cause I do not know what I am not suppose to do, what I can do etc.

If there is anyone out there can you post on here I just have a few questions. Thanks x

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5951
   Posted 4/15/2011 5:15 PM (GMT -7)   
Faunts, yes, my daughter has that problem. She's only had 2 seizures, (grand mal) 7 years apart, the second only a month ago. Both times she was in the sun.

But she's always had a strange reaction, I guess, to being in the sun. It makes her involuntarily brush her hand across her eyes and space out for a few seconds. Now she has expensive, polarized sunglasses and they seem to help with that.

The strobe-light thing they do with the EEG doesn't bother her - just the sun. Doctors haven't had a clue. Is yours similar?

Debbie
...fibromyalgia, hashimoto's thyroiditis, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......daily Nortriptyline, Levothyroxine, & Clonopin, and Tramadol and Midrin as needed

Faunts
Regular Member


Date Joined Apr 2011
Total Posts : 48
   Posted 4/15/2011 5:27 PM (GMT -7)   
Hey Debbie,

Strobes effect me but my EEG came back clear, i think they did not do it at a large enough time for me.

I fitted at least once a month, I am a student so I broke most of the major "no-nos" aka drinking.

I am on medication now and want to risk going back to gigs but the two times I have been I ended up in A&E. Luckily I am only Partial Epileptic.

Does you daughter get a feeling "aura" before she fits? I am kinda new to this epilepsy thing and trying to understand it but like I said I know no one who is sensitive to lights.

Steph
"I need you to recover . 'Cause I can't make it on my own!" - Faunts

Depression
Complex Partial Photosensitive Epilepsy - 1000mg Keppra
Dyslexic and Dyspraxtic

Anyone want to talk? Feel free to message me.

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5951
   Posted 4/18/2011 6:13 AM (GMT -7)   
Steph,

Yes, she feels weird, kind of removed, and things don't look quite right before a seizure. (At least she did a month ago when she had her 2nd seizure)...but she has often felt somewhat the same way in the weeks since, without getting one - it puts her on edge, to say the least.

Things are getting better now that she's back on her maintenance dose of Lamictal. She's 21, also a student, so she also drinks more than her doctor says she should - but what can ya do?? (Well, I am good at telling her what she should do, but I had my fun at her age!)

I hope you get it figured out soon. Do you get auras too? What med are you on?

Debbie
...fibromyalgia, hashimoto's thyroiditis, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......daily Nortriptyline, Levothyroxine, & Clonopin, and Tramadol and Midrin as needed

Faunts
Regular Member


Date Joined Apr 2011
Total Posts : 48
   Posted 4/18/2011 12:28 PM (GMT -7)   
Hey Debbie,

Yeah I get Auras, pins and needles in the head and I am out of it. I respond to questions but my mate describe it as, "sounding like your drunk" once I come round I have a headache, cant walk and lights hurt my eyes.

I take 1000mg of Keppra as I am Partial.

I use to seizure a lot but it calmed down to once a month or if i did something stupid like go to gigs.

Apparently with drinking (and what I have experienced) it is fine to get drunk just stay away from lights. I presume she knows all the precautions about being accidently exposed to strobes or lights aka triggers?

Thanks for getting back to me,

Steph xx
"I need you to recover . 'Cause I can't make it on my own!" - Faunts

Depression
Complex Partial Photosensitive Epilepsy - 1000mg Keppra

"I hope it's worth it, what's left behind me, yeah
I know you'll find your own way when I'm not with you
So tell everybody, the ones who walk beside me, yeah
I know you'll find your own way when I'm not with you tonight" - Fiction - A7X

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5951
   Posted 4/18/2011 8:23 PM (GMT -7)   
Steph, thank you too! Good luck.

Debbie
...fibromyalgia, hashimoto's thyroiditis, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......daily Nortriptyline, Levothyroxine, & Clonopin, and Tramadol and Midrin as needed

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 5/23/2011 7:16 PM (GMT -7)   
Faunts,
I am completely photosensitive. Sun, computer screens, florescent lights. I have temporal lobe seizures and take 1500 mg Keppra / day. I also have Lupus, so it is presumed that is what my photosensitivity comes from. Of course now you have me wondering.... Hmm...
SLE Lupus, Epilepsy, Spinal Stenosis
Plaquenil, Keppra, Medrol, Vicoden, VitaminD/Calcium, Ambiem

Make the best of every day.. You never know what tomorrow will bring you!

darkhumor13
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/20/2011 10:51 PM (GMT -7)   
Hi. I have photosensitive epilepsy, too. I also have not met anyone else with this same disorder. I feel like a rarity. I'm on 1,500 mg of Depakote ER. I used to be on just 1,000 mg but I started having more seizures a few months ago. My epileptologist said I might be having behavioral spells in addition to the seizures, because an overnight EEG didn't catch anything during my seizures I had in the hospital. I just think I'm having seizures because I'm really stressed out. The sun, strobe lights, video games, or any flickering light will cause me to seize.

photosensitivemum
New Member


Date Joined Apr 2013
Total Posts : 1
   Posted 4/23/2013 2:49 AM (GMT -7)   
Hi there

I wonder if anyone could help me. My mum developed photo sensitive skin about 5 years ago. It began as a rear side effect from medication and once discovered she discontinued use. Since then she has been suffering with it. In the beginning she reacted to all light- sunlight, electro magnetic and especially LED and energy saver lights. Now she mainly reacts to 'cold' light- energy efficient lights like light bulbs, new tvs and computer screens. Her face, eyes, scalp would burn and cause pain and bloodshot/ dry eyes. This was not always noticeable (ie redness) but til this day causes her immense discomfort.

She has seen many doctors about it and been treated by skin specialists (basically just unhelpful, expensive consultations), allergy clinics and alternative medicine but to no avail. She avoids these lights and subsequently finds socializing hard with our technology and cannot keep up with technology as it literally causes her pain

Does any one out there have any advice, treatments, anyone having a similar experience?

As her daughter it frustrates me I can't help her. She is a strong woman but this has really disabled her.

Thank you

countryboy
New Member


Date Joined Jun 2009
Total Posts : 18
   Posted 5/18/2013 8:34 PM (GMT -7)   
We were on the road recently and when we stopped for something to eat, as the clerk was handing us our sandwiches, her arm turned on the card-reader laser.

The light his my wife's eyes and instantly threw her into a seizure. Due to the nature of her type of seizure, she was in bed, in and out of seizure for about 2 weeks. It took a month for her to recover.

The first time lights set her off was during the EEG. Since then we have given up on movies as the flashing lights set them off. Additionally we went to a championship rodeo last summer and to our surprise they started it off with fireworks and lasers. Bad idea.

Since the laser card reader incident, I have made a point to ask retailers to point them downward. They look at me like I am a crazy person.

My thinking--they are dangerous. Be careful.

Bayou Hunter
New Member


Date Joined May 2013
Total Posts : 9
   Posted 5/21/2013 12:46 PM (GMT -7)   
I am but my problem isn't the sun it's the lights in stores like a Walmart . I have to get in and get out I can't stay in there all day or I'll get weak and that can lead to a seizure for me . So I always have shades on . I can do EEG's but as I said it's the lighting in stores and not all of them . Some are worse than others .

Bayou Hunter
New Member


Date Joined May 2013
Total Posts : 9
   Posted 5/21/2013 12:51 PM (GMT -7)   
I just read this from another post and do they give you different meds for photosensitive epilepsy ? This is something I never knew.

Bayou Hunter
New Member


Date Joined May 2013
Total Posts : 9
   Posted 5/21/2013 12:58 PM (GMT -7)   
I will keep Everyone in my Prayers Everyday , if the doctor say it's ok , take your vitamins exercise . I got epilepsy from boxing many years ago . Computer screens , lights in stores etc cause me problems so I'm always in shades .

Bayou Hunter
New Member


Date Joined May 2013
Total Posts : 9
   Posted 5/28/2013 3:56 PM (GMT -7)   
Is there certain glasses that you can wear when you are photosensitive that protect you or do you need a change in medication ? If anyone knows please let me know . I know there is alot of knowledge in this community so please help .

Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5951
   Posted 5/29/2013 2:56 PM (GMT -7)   
Hi, Bayou Hunter.

I don't have epilepsy (though I do have migraines and get very dizzy and disoriented from patterns, lights, etc so I think I'm somewhere on that continuum...)

I posted on this thread back in 2011 about my daughter's experience - she has epilepsy and sunlight is a definite trigger for her grand mal seizures. Her neurologist told her to get polarized sunglasses - around $200 - and they seem to help. No one understands her photosensitivity, since the EEG with lights don't affect her. In fact, it's only sunlight.

As for medication, she's still on Lamictal, which she's been on for almost 10 years.

Good luck.

Debbie
Moderator, Fibromyalgia Forum

Fibromyalgia, herniated disc L4-5, (recent discectomy), DDD, Hashimoto's thyroiditis, IBS, migraines, visual disturbances, tachycardia, hearing loss (probably Menieres,) balance issues, chemical sensitivities

Bayou Hunter
New Member


Date Joined May 2013
Total Posts : 9
   Posted 5/29/2013 6:11 PM (GMT -7)   
Thank you Acheybody , this has been a problem for me for years
only the light in stores (some worse than others) bothers me . I will look into polarized sunglasses . I wear them everyday and everytime I go into a store because it offers me some protection against the lights . They can weaken me until a seizure hits but I thank GOD for his Protection . I hope they find a cure for this too one day so none of us have to be on meds for this stuff . I thank you so so much for getting back to me on this . I just found this site and am glad I did . Have a good rest of your day .

abvhaiel
New Member


Date Joined Apr 2015
Total Posts : 1
   Posted 4/17/2015 10:05 AM (GMT -7)   
faunts, et. al.
yuir not alone. thats for sure. im also highly photosensitive, as a reaction to my anticonvulsants, which has been a major life quality changer for me as im a outdoorsy guy. i have completely uncontrolled epilepsy, i suffer full on tonic-clonic seizures several times a week and very high doses of epival were more or less keeping it in check. but the cost was hyper-sensitivity to light, visually. the sunlight is the worst and i wear perscription sunglasses and a ballcap even on cloudy days. the lights in places like walmart, as mentioned by another poster, drive me insane, as do computer monitors. after a recent change to an allergic reaction to the epival, which resulted in an all over sore body rash with purple bruises. ive just been switched over to keppra and had HOPED that perhaps a change in medication wouldve reduced that photosensitivity but... sadly, no matter where ive looked, theres nothing beyond sunglasses that can be used to deal it either...
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