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Photosensitivity anyone???

Tue, 12/07/2004 - 18:47

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

Re: RE: Photosensitivity anyone???

Submitted by diannapop on Mon, 2008-03-24 - 15:00
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!!!

Re: Re: Re: RE: Photosensitivity anyone???

Submitted by Denise And Gabri on Sat, 2007-04-28 - 15:18
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?

Re: Photosensitivity anyone???

Submitted by Trish on Tue, 2006-01-31 - 17:06
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

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