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Long time epileptic, first time post

So, to introduce myself...

I'm a 36 y/o Canadian-American guy, currently living in New Orleans, though Montreal is my hometown. I had my first seizure at age 20 in early 2003, and my second seizure (and diagnosis of epilepsy) a few months later. It's been sixteen years filled with trial and error of various AEDs, until a high dose of Keppra XR (5,250 mg/day) and Vimpat (400 mg/day) actually started to work for me in 2011. The comorbid major depressive disorder, anxiety disorder, narcolepsy, and (ironically) insomnia adds to the fun. Because of the treatments, side effects, further seizures, and negative behavior directly caused by the epilepsy, I've only managed to finish 3/4 of my bachelor's degree (several years too late), owe a ridiculous amount of student debt (which I can't pay off), am stuck living at home with family, am unable to drive, cannot get a job (I'm either over or underqualified), and cannot maintain romantic relationships longer than several months, as my previous partners promise to be empathetic and understanding, but can't — I get it. I've lost friends because of the stigma out there, and I've needed them more than ever over the past 12 months. I've worked as a freelance photographer and filmmaker, until my equipment was stolen in a violent robbery, and my property insurance company is using my epilepsy to try to deny the claim, meaning I can't work. (Yes I know it's discriminatory and illegal for them to do it, but I can't afford to retain legal counsel to stick up for my rights. And the federal government/DOJ doesn't even want to take disability and human rights cases.)

I thought I'd try an epilepsy forum to see others that can relate, at least somewhat. It's lonely without anyone that can commiserate and understand. My neurology team is...terrible, other than giving me my prescriptions when I have other epilepsy-related issues that need to be addressed. In fact, the Keppra and Vimpat don't seem to be working as well as they used to.

Sorry, I'm bad when it comes to describing myself, and I apologize for rambling on. It's hard to talk about all of this as a man with epilepsy and the toxic environment where sharing and empathy are highly discourged. I hope that changes someday, and soon.

Comments

malajube,Yes, I share with

malajube,Yes, I share with the pain you describe.  As men we are often criticized for not sharing our feelings yet I've noticed that when I open up I often feel despised for my immaturity and incorrect thinking about my feelings.  Even when I have told doctors about disturbing thoughts and feelings resulting from medication side effects they don't seem to take it very strongly.  To help me better relate with my medical team I've turned to books like: The Silent World of Doctor and Patient, The Practice of Autonomy, and How Doctors Think to get a better understanding of how to convey my needs across to the "professionals" who are supposed to help me.And I too have had my struggles keeping jobs.  I could get in, but once they found out I had epilepsy and am supposed to avoid certain activities required of their job I was out and had no defense.  I don't think of myself as disabled but I do collect Social Security Disability Income because as I see it I live in a society which refuses to understand how to work with "risky" persons.  They would rather hire persons from drug rehab centers or just released from prison than someone who might have a SEIZURE.  

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