All Meds are Not Created Equal

How long have you been taking your medication? It scares me when I read on different sites people want to quit them. Sure, I want to quit taking them, but I know I will feel very sick if I do quit taking them. It is not worth the risk my friends. Take your medication. Keep a seizure journal. Keep a journal of what triggers your outbursts (or in my case who) The most important thing with your medication is consistency.

Recently my pharmacist changed me back from Zonisamide (generic) to Zonegran (name brand). Now understand, he thought he was doing a wonderful thing. He found the name brand for a very good price. However, it was so much stronger than the generic, I was incapacitated for three days. What was a gesture of good will made me unable to drive or function. My system is just that sensitive. . The only relief I had was magnesium, and a whole lot of it.

Chronic illness is not for the weak, it sure isn’t.

I am 1 in 26

If I had a dollar for every time I told my father “I live with epilepsy, I don’t want to talk about it all day.” HA! He got the last laugh there. I am now out to be a voice when I had none At some point, you will meet or already know someone with epilepsy or a seizure condition. It affects 1 in 26.  The best guess is I had a stroke in utero. If I had to add them all together, I’d say I’ve had 25 grand mal seizures, or tonic clonic convulsions since birth.

The massive cocktail of legal drugs keeps those at bay, but I still get auras, hand tremors, leg tremors, have a horrible short term memory, and easily lose my train of thought. If you are around me any length of time, you know I don’t drink, but I just walk like I’m drunk. (Ok, I drank in college, but we digress) My right leg has very little muscle tone and I have no sense of stepping down (stairs, escalators scare the hell out of me) and I have a death grip on banisters and railings. Same with my right arm. My left had can instantly know, “That’s hot.” It’s a 5-10 second delay for the right. I get bruises and bumps that I have no idea how they got there.

While I am not the type to out dancing all night, strobe lights, hazards on while driving, police lights may cause a mild seizure. Scarier for me are auras that cause hallucinations, exploding head syndrome, limbs jerking involuntarily, just to name a few. There are so many types of auras, but that’s what happens to me the most.

The dry mouth I can handle, it always reminds me to drink more water. Fortunately, it has not been necessary to take tests like the EEG or CAT scans very often. I have an inoperable orange sized cyst in my brain. That is what causes the seizures and the absence of the corpus collosom, what separates your right brain from your left. Yeah, I don’t have that either. I sometimes envy the people who have always been able to have an activity filled weekend and go from event to event. The older I get and the more meds I take, it’s one activity, and I’m out. Exhausted. Dinner and a movie feels like a marathon.  But I am managing. I take my pills, have my auras, my side effects, and get support from church and friends.

I used to have days I wished I was ” normal.” I just had to accept Epilepsy is my normal, and that’s just my pill filled life.