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Photosensitivity anyone???

Topic: 

Hi all, I was just wondering who (children or adults) was photosensitive and to what and what type of seizures it ellicited?The only types of seizures that are produced form this, from what my epi tells me, are Absence, Myoclonic and some types of Primary Generalized TCs.I am Photosensitive to about everything, and had to recently buy polarized sunglasses to avoid some of it.  However I can't hide behind them all the time and some things are unavoidable, but they do cut down on the glare and UV rays that cause the brightness of things.  Can you believe that even Christmas lights set me off.The other night I was at a Christmas party with my for a ladies group at my church and some clown started taking pictures, and BAM, I had fallen into my mom who was standing next to me or the next stop would have been the floor had she not caught me.I only had an Absence that lasted about 15 seconds or so, according to her.  After this person took about 10 pictures, and ellicited about 5-8 seizures out of me, my mom told her she needed to cut down on it for this evening.  She was mad and that was Thursday, and this is now Sunday, and she is still not talking to me.  I also have Myoclonics as well, and they were also tripped by the other activity, so I had multiple seizure types going on at once.The seizures continued for the next 48 hours.I had to spend the later part of the party with my head in the hood of my coat everytime she took a picture, because she just couldn't not do it.Nancy 

Comments

How unbelievably inconsiderate! It's not like you just don't like flashes! They cause you serious harm. That makes me really mad. I am photosensitive, mostly to flashes from cameras (especialy the kind that flash several times in a row), strobe lights, and sometimes blinking neon, sunlight flickering through trees (especially when riding in a car) and a few other things. iget nauseated, get internal flashing lights, and then facial twitches and limb jerks, and it can take hours to recover. I went to see The Lion King, and spent an hour recovering in the lobby after the show. I has asked about strobes, and the usher said no, but they did have very rapidly flashing lights in a scene late in the show, and that did it. I get really angry because i'll tell store managers or theater staff that it's dangerous and they need to warn people, or turn off strobes, and they smile and say of course, and thendon't. I had seizuresina street in Key West several times in a few days because of store window strobes.I don't get why your mom is mad at you. You didn't design your brain. It shouldn't have taken more than one mention to get the camera put away. I can't believe you had to put your head in a coat. I'm hopping mad! Aurora

My mom is NOT mad at me, she has NEVER been mad at me for having epilepsy.  I was born with it, so she has been living with it for 31 years, most of which have been undiagnosed.The person who is still mad at me is the one who was taking the pictures, and got her underpants all in a wad when my mom told her she had to watch it with the camera and not take as many pictures as she was or with the vengence that she was.  This person just gets ridiculous with the camera, and takes like 100 or more at every single church event.It is that kind of ignorance that I can't handle or deal with.  It makes me want to somehow ring their necks until their stupid little heads pop off.Nancy

HI,

I think I'm Photosensitive w/o Epilepsy. and have been that way for about a year. Funny thing is that I was first trigged by Christmas lights. Any way. If the person forces you into in the hood. You ask nicely a couple of times to please turn of the flash. If they don't ask the host to have them stop taking pitchers. and if that don't work you walk up to them grab the camera remove the batteries and the Flash Card ( or rip the film out), hand back the camera and tell them if they want the pitchers back they can have it at the end of the night. Then walk over to Host hand over Items to Host and go on with evening. It is then up to the Host what happen next. If the person that keeps flashing the camera at you after they have been notified of your condition presets, then that person is committing assault on your person. If need be call cops and/or break camera.

My triggers are any flashing light, light and shadow, TV, & pattern. I'm on Topamax and that keep my seizures from hours long to minuets long.

Phototo sensitive epilepsy.Yes that's me.I have a glare screen in my monitor because of it.MY tv can even bring on my seizures and that's not very common.Now the flashes lights will do it to me definitely. Belinda

This is new my 2 year old daughter started having seizures at 3 monthes we never had a problem with lights, now ceiling fans sun light that peeks through the slats in the blinds going out side from in the house, reflections from water when she goes in the pool, shadows from trees passing while riding in the car not to mention any toy with a flickering light sets her off and I can't get her to wear sunglasses! this summer wasn't as bad as last, last summer I couldn't take her outside during the day we would have to wait for overcast days or nighttime to go swimming. Her epilepsys are always changing so its been hard to diagnose but its hard because I never know day today how it will be I have two other children and its hard to accomidate everyones wants although they have been patient on the days we try to get out as a family and she just can,t do it I,m hopping as she gets older she,ll understand she needs the sunglasses before any resentments start from the other children.

My five year old daughter was diagnosed with reflex epilepsy; she is very sensitive to natural sunlight and needs to wear polarized sunglasses when outside. The frequency of her seizures is great; she would have them constantly if in bright sunlight. We have had the diagnosis for over a year and have had very little success with medications.

YES - my daughter also has myoclonic episodes when exposed to sunlight and we have been struggling to find a medication that would control it.  She also has absence seizures and has had 3 tonic-clonic seizures.  Two of the TCs were caused by medication changes that the neuro prescribed in an attempt to eliminate all three disorders.  At this point, we are happy to have her TC and Absence seizure-free, but the involuntary movements she has in sunlight have caused her social anxiety.  If anyone has a formula of one or more medications that has lessened or eliminated photosensitive myoclonic movements, please share!!!

Dear Samantha

Our daughter Carmen has epileptic photosensitivity. We are currently using Topomax, Kepra and Lamictin as a morning and evening cocktail. Generally we have control over 'grand mal' but Carmen's sensitivity to natural light is not really improving. We are trying to find other options. Carmen is 12 going on 13 now and she has had the condition since she was about a year old. Lamictin is the main player in the control of the 'grand mal' seizure but it seems like it can increase light sensitivity ... so somewhat a paradox if this is the case. We have yet to get confirmation of this but what we have observed in going through old photos is that she was wearing her sunglasses less when she was younger.

What medication is your child currently on?

Last May I became photosensitive after having E for at least 13 years. I was not photosensitive before May. The photosensitivity brings on myoclonic seizures. I am a graphic artist and was going to school online to finish my bachelors degree in law. I was suppose to graduate in May.I will be going to a specialist in new york next week to get back on the computer.

Trish

Hi,

I hope I've chosen the proper space here for my comment, I've just signed on here...
The crazy thing is for the past 10 years, I've been suffering off and on from seizures myself, however my doctor has been unable to find a specific cause - other than A-typical migraines.
I do have photosenitive tendencies myself, however - such as sunlight through the trees while in the car, strobe lights (can't go through haunted houses and have a heck of a time at concerts or clubs)flickering flourescent lights are the worst for me - some stores have particularly bright lights that I can;t even bear to be under, even when they're not flickering.
I've never suffered the same way twice - any one or all of the follwoing can happen - sudden, intense headache; vertigo, numbness in face, eyelid twitching, blurry vision, slurred speech...I've passed out a couple times as well.
My Doctor calls them Simple Partial Seizures and to make things even more complicated, most of the time, they just come on completely out of the blue, usually while I'm driving (Now THAT'S terrifying) and sometimes they have absolutely nothing to do with photosensitivity.
I've also had full on tonic clonic seizures, but again - it's never been diagnosed as epilepsy...

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