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AnniesDizzy

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I have been here before but it was a while ago so I thought I'd reintroduce myself.
I'm Annie. I have epilepsy. Mostly partial and partial complex seizures. I'm a grandma. I don't see my kids or grandkids much since I can't drive anymore. It's been three years since I lost my license to epilepsy.
I was doing pretty well. I had seizures once a month for 5 months then in late July they kicked back up to three or so times a week.
When I have a seizure my right droops. The eyebrow drops about half an inch and the eye closes sometimes almost all the way closed. It takes a while to open back up to normal. Lately the seizures have been so often that my eye is always droopy.
When I was a kid I always thought my eyes were my best feature. Now I look like Popeye.
I'm on a CPAP at night. It isn't helping. Most of my seizures come out of my sleep. Of course, coming out of a partial complex I can't tell if I've just randomly fallen asleep or if I seized until I notice my eye. I lose peripheral vision.
I'm on disability. I had a good career before this got so bad.
My mom says that it has been going on since I was a kid, she just didn't realize what it was.

Well, thanks for having me here. I hope to find some useful things. I hope to be a support to you too.
 
Hi! Sorry to hear about your troubles, but since you've been here before, you know there's a good crowd. :)
 
Hi Annie,
Are you seeing a neurologist? Maybe there can be something done with your meds that can give you better seizure control. Did anything change in July when the seizures increased? Any changes in your stress levels, general health, sleep, diet, hormones, etc. that might have played a role?
 
Hey AnniesDizzy, boy, reading what happened to you this July certainly reminds me of myself in June? I was having seizures but not many through the year. June was a hard month where I had them almost every day and slowly they are slipping back to a couple come my good weeks. I really feel for where you are at and I certainly hope they slow back down for you. Best step is as Nakamova asked if you have done... getting in to see your neurologist would be a good step, I know I am patiently waiting for that day to come end of the month - would have been earlier for me but when my neurologist office called to ask me all that is going on, they canceled my original appointment cause they wanted more time for me. I really hope youngest a good step forward heading back to where you were at, and a touch more positive would be GREAT!
 
I am seeing a neurologist. He ordered more tests.
Stress is a huge trigger for me. Just before the seizures kicked back up in July, I got to watch my grandsons for the day. They are busy little boys. I was EXHAUSTED from it. I don't know if that is what made the difference or what.
I get these waves of exhaustion that are not just being tired, it's like being tired to my bones. I feel like I can't even move my arms.
The neurologist increased the carbamazepine a little. Maybe that will help. I see him again next week.
 
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