grilosaurus’s Profile

Close Epilepsy & Seizures

I was diagnosed with epilepsy at the age of 17, and it's been up and down since then. I've never had a tonic clonic seizure, but I have had seizures that effect motor function, and I'm fallen during a seizure a couple of times (once I hurt my wrist). Mostly my seizures are harmless (though unpleasant). They often are sensory and involve hearing changes and feeling intense pain. They are triggered by loud sudden noises, or being startled from behind--that sort of thing.

Treatments

Keppra Not Working

It was awful. Made me seriously wacky in the head (emotionally speaking), and it seriously screwed up my cycle. I definitely do not recommend. It made me borderline paranoid!!

Tegretol Not Working

It worked for a while, but eventually stopped. Side effects were awful. Made me dizzy and tired, and gave me slurred speech.

Trileptal Somewhat Helpful

It's the best thing I've taken so far. One seizure a week (give or take) is the best result I've had thus far. Side effects are pretty monstrous though, and I have to take so much of it to get a moderate result. My stomach is a mess, and it gives me a major druggy buzz thing (makes my face hot, burred vision, dizziness to the point of not being able to walk). I take most of it overnight to avoid most of the SEs, but still feel it somewhat. And I'm just sleepy/tired all the time.

Vagus nerve stimulation Considering

I am very interested in trying this, since medication therapy doesn't agree with me. I'd like to eventually cut back on the pills at least somewhat, they are eating me up inside, and I've never been so skinny! But it's because I feel sick all the time.

Zonegran Somewhat Helpful

It worked OK, but eventually gave up on it because it caused me to lose weight (I don't have any to lose). I went from 120 pounds to 105 within a year, without changing my eating or exercise habits. I still can't gain the weight back, even though I'm off it. But it also messed up my urinary system a bit, so I switched to trileptal.

Trileptal Working / Worked

The side effects are probably the worst I've had short of Keppra (seriously, it completely changed my personality, it was very scary). But it's also worked the best. I take most of my pills overnight to avoid the bulk of the side effects, and if I time it right I mostly just feel sleepy during the day (and occasionally "blurry", visually and mentally). I take 2400 mgs a day. It eats up my stomach really bad though. I've just learned to live with it.

Close Parenting Toddlers (1-3)

I have one child, a boy named Miles. He's turning 2 in September. He's a real sweetie pie, but feisty too, and so smart! But not much of a talker. He loves music and dancing. He'll dance to any sound that has rhythm--the washer, beeps in the grocery store...)