Any other photosensitive people out there?

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

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

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

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...

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

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 .

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 .

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

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...