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November is Epilepsy Awareness Month

November is Epilepsy Awareness Month. I’ve shared here before that I suffer from seizures. We’re not exactly sure on what causes them. The most I’ve been told is that there’s “something” on the left side of my brain.

My seizures started when I was a teenager. My last doctor has told me that it most likely sounds like Juvenile Myoclonic Epilepsy. Seizures are scary and frustrating. For sometimes weeks beforehand, I start having myoclonic seizures in my right hand, and of course I’m right handed. Living in a house with stairs is a frightening thing. I often need the help of relatives and friends when I feel a seizure coming on, because even simple things become difficult, and I need help with my kids. During this time, I’m filled with anxiety, and my moods are all over the place and off the charts. I almost always end up having a tonic-clonic seizure. They’re painful, and can be dangerous. I’ve had them in the middle of the street, on the toilet (more than once), I even had one while sitting on the back of a bench. I landed on my head, and was lucky to not sustain any injuries. A lot of my seizure occur while I’m sleeping, which you’d think would be a blessing, but then every muscle twitch wakes me up and leaves me wondering if I’m having a seizure. I’m afraid to fall asleep, and sleep deprivation is a huge cause of seizure activity. It’s a no win situation. We won’t even mention the nights I sit awake thinking about Sudden Unexpected Death in Epilepsy, or the very real fear of vomiting while seizing and choking to death.

It disrupts my life in so many ways. After a seizure I cannot drive for six months. I am taking medication that is destroying my liver and causing my hair to fall out. My memory is shot. It’s unbelievably frustrating.

I worry about having seizures in front of my kids and traumatizing them. I worry about having seizures in public, and wonder if anyone would help, or people would stare.

epilepsy

2.7 million Americans have epilepsy. 1 in 26 people with develop epilepsy during their lifetime. Epilepsy is not a mental disorder, it is a physical condition. There are so many different types of epilepsy, and many kinds of seizures. More funds need to be raised for more research. There are just far too many people looking for answers, looking for a cure.

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