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Posted by on Dec. 24, 2009 at 12:07 AM
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Hello, my name is Kalsy, im 19 years old, single parent of 1 and have been diagnosed with epilepsy. I got diagnosed in june of this year but was told by the doctor that reviewed my EEG that i probably had it since i was 11 (when my weird seizure things started). I call them weird because im not laying on the floor shaking... mine are... different. Anyway i was wondering if you guys had any tips on how to cope? im having a difficult time because i feel like no one understands me and why im terrified of it.


by on Dec. 24, 2009 at 12:07 AM
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LIZARD66
by Member on Dec. 24, 2009 at 8:46 AM

There are literally dozens of types of szs. Are you aware during them? What do they look/feel like? I had simple partial szs in large clusters for 25 years before I knew what they were.

A very important part of dealing with any sz is knowing--and preventing, whenever possible--any triggers that set them off. Sleep disturbance, poor nutrition, changes in weather, flashing lights, hormonal changes, and illness are all common contributors.

If you notice a pattern to yours--if they result after certain things such as any of these, or others, that'll help control them. Med is just an added security, but identifying and avoiding triggers can mean the diff between partial control and complete control. :)

Good luck!

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

clarasmommy08
by Member on Dec. 24, 2009 at 3:59 PM

Thanks for the advice. Yes i am mostly aware when i am having a seizure but im pretty much paralized so even when someone is talking to me i cant answer them. I do know that flashing lights are a trigger but im not around flashing lights, like at all, and im still having them a few times a week. My doctor upped my dose of Lamital to 300mg, but if i cant find a trigger i dont think the meds are gonna do much good.


LIZARD66
by Member on Dec. 24, 2009 at 5:50 PM

Okay, so they sound like simple partials. I'd keep a journal to determine anything you can that seems to figure in. Is it going to rain? Is the season changing? How much sleep are you getting? Have you been sick? What are your hormones doing? Any unusual stresses in your life? What about caffeine or artificial sweeteners?

It can take awhile to pin down triggers. I didn't know mine for decades, and they aren't always avoidable, but fortunately, Keppra seems to work on them (hormones, sleep disturbances, air pressure changes). However, taking care of yourself is a very important ingredient to managing your epi. Eat right, manage stress, get plenty of sleep. Many people don't get complete control, too, but knowing and managing triggers can help tremendously.

hugging

LIZARD :)

43 yo mom with lifelong epilepsy and other neuro and autoimmune issues, and owner of Epilepsy and Seizure Disorders. Self-advocacy is VITAL to your existence, and it saved my life! Any questions at anytime, please ask!! :)


group hug

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