Comments on: Dealing with epilepsy, specifically myoclonus

Question: Dealing with epilepsy, specifically myoclonus

arnold — Mon, 04 Feb 2008 18:25:26 -0800

What kinds of little things do you do to copy with epilepsy? My wife recently has started to have myoclonus, besides the normal auras and occasional tonic seizures and are looking for ways to alleviate them a bit or at least cope. She's been prescribed Lamictal, and is easing into the dosage to prevent the rashes, before easing off her current medication (Carbatrol). We're supposed to go back to her neurologist in six weeks or so, but in the meantime "the jerks" become really distressing at night, especially when she's trying to fall asleep. When they finally stop her muscles are fairly sore.

By: thinkingwoman

thinkingwoman — Mon, 04 Feb 2008 19:11:18 -0800

is there an epilepsy support group in your area? or an online community? i'm sure the hivemind will have some ideas, but it might be more fruitful to hone in a little more specifically on your target audience.

that said, i know nothing of epilepsy, but i do know about sore muscles. you might want to look into deep tissue massage to release the lactic acid (which causes soreness). also, a banana is good--a little extra potassium seems to help. and i love me a hot bath with epsom salts, although that might be a little time-consuming in the middle of the night, or first thing in the morning.

good luck--i'm sure this must be very frustrating for you guys.

By: the dief

the dief — Mon, 04 Feb 2008 19:13:59 -0800

Oh man, I feel for you. My wife's got complex partial epilepsy; she's on Lamictal and Trileptal. Even with those, she still has seizures about once a month, usually in her sleep. How I cope, and try to help her cope:

1. Enough regular sleep for the both of us.
2. I try to make sure I have access to Ativan for post-seizure application, because she tends to have them in clusters.
3. Keep a positive attitude and/or know that it could always be worse. Mrs. the dief volunteers at a brain injury clinic; the folks there have it way worse than she does.
4. During her seizures, I try to make sure she doesn't hurt herself. Since we're both usually in bed, it mostly means grabbing her to make sure she doesn't fall off the bed.
5. Post-seizure, her head aches like crazy and her muscles a bit also. I try to remember she won't be at 100% the day of.
and 6, this sounds obvious, but she's not doing this to irritate me, inconvenience me, or cause me stress. I try to react with love and compassion.

We're lucky enough to live in a civilized country with a sane (read: socialized) healthcare scheme, so unlike when we were poor and living in the US I feel very secure knowing that I can call the ambulance if the seizure lasts long or if she hits her head and it won't cost me a thousand dollars.

If you have any more questions or want to talk about more seizure stuff, please Mefi mail me.

By: the dief

the dief — Mon, 04 Feb 2008 19:15:29 -0800

Oh, and no rashes for us with the Lamictal. You probably know this already, but if you do see rashes, let your neurologist know immediately.

By: Ironmouth

Ironmouth — Mon, 04 Feb 2008 20:22:08 -0800

Don't miss your medicine. That's the key. Have your supply in ahead of time.

By: ClaudiaCenter

ClaudiaCenter — Mon, 04 Feb 2008 21:31:01 -0800

I have always been very impressed with the work of the Epilepsy Foundation. Here's the affiliate responsible for Iowa.

By: ClaudiaCenter

ClaudiaCenter — Mon, 04 Feb 2008 21:34:11 -0800

Here's some links to internet support groups -- I think you would get helpful answers if you posted your questions in that kind of group.