Feel like a wuss - Epilepsy Message Board

shelseker · 09-22-2005, 05:01 PM

I have been reading more of the back posts from you all, and I am feeling like a real wuss. My son has 2-3 seizures a month and many of you are dealing with that many a day or week. I just don't think he should have them at all!!! I thought they could be better controlled with medication. But, his have stayed pretty constant the last few years no matter the dosages. If he would have a seizure and then bounce right back up, it wouldn't be so bad, but he feels crummy (and won't eat) for several days after each one. I guess I should be happy he doesn't have more, but I want him to have none! I just got an appointment for him for next week with an epileptologist at the local medical center's Epilepsy Clinic. He has seen regular neurologists before. I'm anxious to see if they come up with anything new and different. Anyway, I just want to you all to know that I admire your courage. You may not want to hear that, but I'm Michael's mom and I know how hard it is for me to watch him seize. It breaks my heart every darn time and it's been 11 years since they began. So, I think those of you who go through them regularly and are doing everything you can to educate yourselves and get yourselves the help you need, and then come on here and help folks like me and my son.....well, you're just a bunch of darn heroes!!!!!

Travis from MN · 09-22-2005, 07:19 PM

Don't feel like that.

I went years controlled on my seizures starting at age 5; until post high school. Thats when my problems started (seizures worsened). My worst originally would be an aura (ringing in the ear) usually. I might have a GM if I forgot to take my meds.

That blossomed into multiple a WEEK and a changing of my med routine for 6-8 YEARS. I had been able to DRIVE for 3 years. Talk about freedom being taken away. I had to move to the city so I could navigate with the bus system.

Three years later I moved again to another city that had a bus system (my only requirement). I found a Great Epileptologist up here when I went on the EFA's walk. Took 6 months to get in to see him but it was worth it. I liked that doc in the first 5 minutes of speaking with him.

So defining control is patient to patient basis. In my case; looking at my PAST where I had control; seizures were VERY RARE. After high school when they became a problem and we needed to explore other meds (I've been on more than 6, and combinations therein) it was more than 6 a month usually in the chaos years months. In my case that is a lot, compared to before when I had none.

Now I am down to one every 2 months maybe; and thats a SP usually. GM's are maybe every 4-6 months. Not good enough to drive. I want them down to every 10 months to drive. This state standard is 6 months (and you lose the license when you have one) so hence my reasoning for extending the time frame.

I don't know his history,nor do we need to know; or how many meds he has been through. I can only share my own. My seizures are from a brain tumor, non cancerous. I am fully able. It was discovered at a young enough age that I am not disabled in functions. Only side effect is the seizures that need to be controlled by heavy doses of medications.

Talking to others only helps in your education.

--Travis

neurowreck · 09-22-2005, 09:30 PM

Please don't feel like a wuss....you actually see what's going on- and that's got to be hard...those of us with seizures that alter consciousness or percepetion are usually semi to totally clueless, except for the "run over by a truck" feeling afterwards!! I had years with none....then moved back to a very stressful situation, got a bunch of weird infections (for me), and they've been a mess, along with another autonomic disorder, that i think is a type of seizure. Even my therapist says I'd scare someone to death with the symptoms I get..... boss sent me out by ambulance about 7-8 times from work after I'd be found face down...I remember none of any of that .....THAT is hard- the not knowing. But the seizures themselves are not painful, or even remembered. So you're the one who isn't the wuss to be able to be there for your son, and get him the care he needs. The goal of epilepsy therapy is NO seizures....some people get to that point , with maybe a breakthrough seizure if they're sick from something else, and their sz threshold gets altered by that, or lack of sleep.... I'm another one who can go for days after the bad ones and not eat.....haven't eaten 3 meals in a day for months. Everyone is different- but you're no wuss !!