Community Forum

Happy or Safe

I was diagnosed with Tonic Clonic epilepsy at 10 and at 18 had my first status epilepticus episode, it lasted 4 days. I take 200mg's of lamictal-XR 2xDaily. Given my life so far and disability I value quality of life above all things, not material possessions per say, freedom to live how I choose. At 18 I moved in with extended family to escape an abusive parental situation. My epilepsy has no diagnosed triggers, the best correlation the Neurologists could come up with was that it is brought on by family stress. I continued to have what I thought was Tonic Clonic seizures every few months for 7 years. 3 years ago I learned that by drinking alcohol medicinally during extremely stressful events like holidays or encounters with my parents I could avoid seizures. At age 25 I moved away from my extended family after things got too stressful and now live alone despite the risk. They think I'm going to die within a couple months. After hearing a detailed description of the episodes I determined I was actually having Status Epilepticus episodes for the past 7 years, not Tonic Clonic. My family didn't know the difference in severity. As a male adult with Epilepsy I have always struggled with confidence, to be independent and accepted as little help or medication I could live with. Ever since I was 18 when I woke up I wondered if I would have a seizure that day, when I went to bed I wondered if I would ever wake up. That fear will never go away, I really am living life on the edge, however I refuse to let it destroy my life any longer. Living alone has released so much stress, but it has definitely added financial stress. I'm lonely without a support system or family to rely on, but if people pull away when they think you might die I don't think I should have truly relied on them in the first place. I'm working on building a new support system but my new lifestyle doesn't leave a lot of time for this kind of thing. It's frustrating but so far I'm content with what I've wrought. I'd appreciate an outside view?

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