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Lis

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I've never really talked to anyone who has epilepsy. How can that be? I didn't even think about it until now.

Mine are simple partial with some generalized seizure activity. I've never lost consciousness. I'm all sensory. They affect perception, smell, feel, my brain feels stuffed and time is far away. I can't converse. I see mouths moving and words finding their way into my brain in horrible slow motion. Then my brain can't seem to put them all together nor find the words to respond back. It's so painful I can barely be around other bodies.

My vision is so clear and sharp and I see every movement, color, in horrible detail. Everything looks so sharp it hurts. Of course lights, patterns especially bright lights, white backgrounds seem to pulsate and that's it vision and perception just went haywire.

These are just a few among many. It took years to be diagnosed correctly. I was misdiagnosed with every mental illness except schizophrenia because I don't exactly hear strange voices in my head and only talk to God when I pray. My eeg's are interesting. It seems one spike sets off another and another and the effects would take days to wear off.

I'm now on 3000mg of Keppra, 400mg of Lamictal a day and have a vagus nerve stim and the seizures are pretty well under control. Mostly.

It would be interesting to see if anyone shares this "not your garden type variety" of epilepsy - so I was told by my first neurologist. I just can't think it's that unusual.

Thank you for any comments.
 
Hello Lis,

My Son has E not me

just wanted to wish u a warm welcome to CWE/

So gald u took time to share, thank u....We can and do all learn from each other = no doubt the CWE members will be in with some feedback..

"seizures are pretty well under control. mostly " so glad to hear this, its been one long road for u to get there!
 
Hi Lis, Im new too and I can relate to being diagnosed with MI/epilepsy and how they over lap muddling out what is what. To be honest, Im completely confused by it all.

My son has a VNS, so I would be interested in sensations or how it feel to have one because he is unable to communicate with me about this, only if your willing to share that is.

but anyway, Ive had a lovely welcome here, so know you will get the same :)
 
Hey Lis
welcome, I'm on Lamital and Keppra too. Yay!!
were glad your here.
 
Hi Lis, welcome to CWE!

I'm sorry you had such a long rocky roady to the epilepsy diagnosis; unfortunately that seems to be a common story among CWE members. Here at CWE you are definitely among folks who can empathize with what you've experienced. Make yourself at home!

Best,
Nakamova
 
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