How Epileptic Seizures Make My Future Unpredictable

I’ve been an epileptic since I was 3, so close to 27 years. Just today I got out of the hospital after having gone into status epilepticus. I had three grand mal seizures, one occurring in the back of the ambulance. I bit my tongue and felt pretty much wrecked.

I’m lucky to have such a good neurologist and nursing staff that are patient with me because I always operate at half my mental capacity after a grand mal.

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For those who don’t know, there are over 40 different types of known seizures and they now think I have the ones I’ve hoped to never have. Most people who have these seizures get some warning called auras, but not all! I come to with my mum telling me to “take a breath” or my lips will be blue and it feels like an elephant squeezed my lungs with its trunk.

 

It makes my future unpredictable. I am just starting my career as a nurse. I’m currently in my third year of my degree, and I have to disclose everything to my licensing board APHRA. It’s been hard enough getting a job as a student. I’m so unsure of what to do with this degree. Epilepsy has already denied me the one thing most teens look forward to getting: their driver’s license. I will never get it. The meds just make me ridiculously hungry and cause me to gain a ton of weight.

There’s very little new research being done. There are these preconceived ideas about what epilepsy looks like – which is only the grand mal seizures. Many people don’t realize there are more than two or three types of seizures.

I’ve just gotten a bigger pill organizer because I have four or five horse-size tablets that don’t fit in my current pill box. All my meds have been increased. Now I just need to build my confidence again.

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Thinkstock photo via Volodina.