queenofpies
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Hi! I'm brand new here, and was hoping to get people's perspectives on some things, if that's ok!
I've had epilepsy since I was 4, and I'm now 30, but I've rarely had the chance to meet other people with epilepsy and compare experiences. I've only had a handful of grand mal seizures; most of the seizures I've had have been clonic, but partial seizures. I've been on Tegretol since nearly the beginning, which partially controlled the seizures all through my teens and early 20s.
Amazingly, it's now been about seven years since I've had a seizure. However, I still have days where I feel 'seizure-ish'. Is this a common thing? I'll get feelings just like those that normally used to precede a seizure. For me, it's a pulsing feeling in my left hand (which is where the convulsions always used to begin from), a sense of anxiety, and some clumsiness and brain fog. That always used to be my warning sign to lay low and stay someplace safe. However, it can persist for hours and not result in an actual seizure. These sensations often come when I've experienced things like sleep deprivation, dehydration, or major stress, which have always been seizure triggers for me.
I still have days like this a couple of times a month, and I'm starting to wonder if I should consider changes to medication, or if this is even epilepsy-related at all. I've seen my neurologist in recent years (he's great, and specializes in epilepsy), but because I'm not actually having seizures, he doesn't seem worried. However, I'm getting tired of the disruption it causes to my life.
Any thoughts would be much appreciated! It's really encouraging to see such a helpful group here.
I've had epilepsy since I was 4, and I'm now 30, but I've rarely had the chance to meet other people with epilepsy and compare experiences. I've only had a handful of grand mal seizures; most of the seizures I've had have been clonic, but partial seizures. I've been on Tegretol since nearly the beginning, which partially controlled the seizures all through my teens and early 20s.
Amazingly, it's now been about seven years since I've had a seizure. However, I still have days where I feel 'seizure-ish'. Is this a common thing? I'll get feelings just like those that normally used to precede a seizure. For me, it's a pulsing feeling in my left hand (which is where the convulsions always used to begin from), a sense of anxiety, and some clumsiness and brain fog. That always used to be my warning sign to lay low and stay someplace safe. However, it can persist for hours and not result in an actual seizure. These sensations often come when I've experienced things like sleep deprivation, dehydration, or major stress, which have always been seizure triggers for me.
I still have days like this a couple of times a month, and I'm starting to wonder if I should consider changes to medication, or if this is even epilepsy-related at all. I've seen my neurologist in recent years (he's great, and specializes in epilepsy), but because I'm not actually having seizures, he doesn't seem worried. However, I'm getting tired of the disruption it causes to my life.
Any thoughts would be much appreciated! It's really encouraging to see such a helpful group here.