Epilepsy & Seizures Support Group

Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...

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/ Epilepsy & Seizures Support Group

Photosensitivity Epilepsy Anyone??

deleted_user
deleted_user
I have PSE and the doctors are saying that I have had since a pre-teen. I knew somethings were wrong with me but was Strokes were my problem. No one ever did a EEG or a MRI until after the Grand Mals started in 2005. Now I can look back and see things about myself that I thought were normal but were not. Just wondering what others people with do and if meds work. I am on 3000 Mgs of Keppra and 600. Mgs of Dilantin. How much more of this med. can I take.
deleted_user
deleted_user
I was just diagnosed with it in December.I know actually what you mean.They say their are only 1 in 40,000 people with Photosensitve Epilepsy. I don't know about Keppra. They have me on lamictal only 300mg a day. I cannot believe I found someone who has the exact kind of epilepsy as I do. Ask your neurologist how much more you can take!!
deleted_user
deleted_user
I also have photosensitive epilepsy.
I've had it for years.
can't take Keppra allergic to it and Lamictal.
I've had MRI's CT scans EEG's brain surgery the works.
But nothing controlld my seizures.
deleted_user
deleted_user
PS is a large part of my seizure problems...keppra is the only drug i can tolerate....but it really doesn't seem to help when the seizures are triggered by lights

i have 4 different pairs of perscriptions glasses i wear....all have a mirror coating on them...that seems to help...they're all polarized...and they have various shades of tinting...none are completely clear....and that also helps a little

i wish my doctors had some tips on living with this....you have to deal with lights....and they freakin' flicker at times....
deleted_user
deleted_user
I find the haddest part to be going out in public. If there is a lot of talking around me it starts to sound like bees buzzing in my head. I will stop talking or repeat over and over the same thing. I know I am skipping (thats what I call it)but can't get a hold on it. Can be standing in line to order at a fast food place and can't think of the names of what I want. I now never go anywhere like that without my best friend or daughter. I have no idea how to get my Drs' to understand this. Do they just not know too much about PSE or do they think that I am just crying over spilled milk. Jade
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