Photosensitivity?

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JaneC

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My daughter was diagnosed as having photosensitive E but I'm pretty sure she has never had a seizure brought on by lights.

She's a big music fan and goes to a lot of gigs so I suppose I should be grateful she hasn't taken had than taken away from her but I was just wondering … anyone else who has this diagnosis yet doesn't seem to be affected?
 
I do not believe that's ever triggered a seizure for me but my diagnosis is JME light sensitive.
 
Thanks BlueCat, that's interesting. My daughter's original diagnosis was idiopathic generalised epilepsy with photosensitivity. Lately she's been having probs with absences and myoclonic jerks although her TCs are infrequent. This seemed to fit JME so I asked the E nurse about it and she agreed.
 
Good luck. My JME wasn't diagnosed until I was 42. And even with that, I want to talk with an E doc as I wonder if mine is more like your dtr's orig diagnosis. Brains! What can you do?
 
My daughter was diagnosed as having photosensitive E but I'm pretty sure she has never had a seizure brought on by lights.

She's a big music fan and goes to a lot of gigs so I suppose I should be grateful she hasn't taken had than taken away from her but I was just wondering … anyone else who has this diagnosis yet doesn't seem to be affected?

I was never diagnosed as having photosensitive E, but sometimes bright, flashy lights do get to me..... I have to turn away, otherwise I feel like a seizure coming on.

I can't believe they made this diagnosis, yet your daughter isn't affected by the lights.

Here's some interesting info on this type of E:

http://www.epilepsy.com/learn/triggers-seizures/photosensitivity-and-seizures
For about 3 percent of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures.
~This condition is known as photosensitive epilepsy.
~More common in children and adolescents.
~Becomes less frequent with age.

For about 3 percent of people with epilepsy, exposure to flashing lights at certain intensities or to certain visual patterns can trigger seizures. This condition is known as photosensitive epilepsy.

Photosensitive epilepsy is more common in children and adolescents, especially those with generalized epilepsy, and a type known as juvenile myoclonic epilepsy. It becomes less frequent with age, with relatively few cases in the mid twenties. Many people are unaware that they are sensitive to flickering lights or to certain kinds of patterns until they have a seizure. They may never go on to develop epilepsy with spontaneous seizures. They could just have seizures triggered by certain photic conditions. Many individuals who are disturbed by light exposure do not develop seizures at all, but have other symptoms such as headache, nausea, dizziness and more. They do not have epilepsy.
 
I've been diagnosed with photosensitive epilepsy. Shortly after my head trauma I had one of my first seizures at the "dance hall" on the base. I can't go to movie theatres either. Too much visual interaction on tv or online causes seizures. Same thing with a lot of lights while riding in the car at night.
 
Some of my sz's can be triggered by flashing lights, but it doesn't happen that often, because I stay away from the lights.My computer use to bring on my sz's but we fixed that problem with a glare screen.
 
I have JME with photosensitivity. Flashing lights at gigs or the flicker of a computer screen don't affect me - perhaps a bit unsettled and fidgety at gigs, moreso if the lights are dance-party quick flickers.
I'm very responsive to warm, flickering lights when my eyes are closed - for example being driven along a road with sunlight through trees, or through a tunnel with orange lights. It doesn't affect me if my eyes are open.
 
I've had epilepsy for 11 years and was diagnosed when I was 27 so I may be a little older than your daughter. I've been to several shows with strobe lights and I've never had a problem with them. I went to see Trans-Siberian Orchestra (not sure if you know who they are) a few years ago and their show is pretty much based on singing and a dramatic light show. I was ok when we left there.

At any show that I went to when the strobes or flashing lights went off a lot I'd look at the ground and not up at the stage just to be on the safe side. Even by doing that you can still see the lights out of the corner of your eye. I'll clothes them too sometimes but you may be able to see that the lights are flashing even by doing that.

Everyone is different however so just keep that in mind.
 
Everyone is different however so just keep that in mind.

I agree. It's also worthwhile noting that my responsiveness to light is also influenced by other factors - stress, how long ago I took my pills, how tired I am. Something else for your daughter to consider!
 
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