Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Any one else have this problem?
Sat, 05/21/2005 - 09:04First of all, let me say I am so glad to find you all. It's nice to know you're not alone. Since I am the only one in my family with epilepsy, I was beginning to feel like my own little island!
I was recently diagnosed with TLE. I have the typical spots, panic seizures, tunnel sensations, hearing things that aren't there, you name it. But I also have periods where the right side of my body jerks, particularly my right leg. Sometimes right before it happens I get a crawling sensation on the right side of my head, like someone was tickling my brain. I was wondering if anyone else experienced the same thing? I wanted to ask my doctor, but you know how they are, busy, busy, and I always feel like I'm bugging them so I tend to keep my mouth shut. I was started on Topomax, but quickly taken off of it (What a horrid med!). I'm currently taking Trileptal 150 mg x2 a day, but am supposed to increase to 300 mg x2 a day soon. It seems to have begun to help with the other seizures(I haven't had one in a few days, but that doesn't necessarily mean anything), but not the jerking. Does anyone else have these or is this something not related?
RE: Any one else have this problem?
Submitted by mommy2kyra on Fri, 2005-05-20 - 17:52
Hi Sunshine :)
Welcome...I don't have the jerking thing, but I have heard others mention it. I, too, have TLE. Have you looked up seizures on epilepsy.com? There are ALL kinds of seizures, my neuro is quick to point out. The jerking may be part of the complex partial or maybe it's another type of seizure altogether. I don't know. A good place to start is writing out a timeline. For example, you notice that tickling sensation..then, your leg jerks...onto feeling panicked, and then spacing out for a minute. Whatever your pattern may be, write it down. Then you can share your observations with your doc.
Don't be embarassed. Your doc needs to know whether or not your meds are working. If you don't give him/her all of the facts, you won't get proper care. If you already know your pattern, even better! Call the doc today and let them know what you're experiencing. And don't EVER feel as though you're bugging your doc! That's what he/she gets paid the big bucks for!! LOL We're talking about your health...the most important thing...it's crucial that all aspects of your care are seen to. If the doc you see is always seeming annoyed with you, for addressing all your concerns, then get another doctor!
Good luck to you, see ya around :)
Heather
Hi Sunshine :)
Welcome...I don't have the jerking thing, but I have heard others mention it. I, too, have TLE. Have you looked up seizures on epilepsy.com? There are ALL kinds of seizures, my neuro is quick to point out. The jerking may be part of the complex partial or maybe it's another type of seizure altogether. I don't know. A good place to start is writing out a timeline. For example, you notice that tickling sensation..then, your leg jerks...onto feeling panicked, and then spacing out for a minute. Whatever your pattern may be, write it down. Then you can share your observations with your doc.
Don't be embarassed. Your doc needs to know whether or not your meds are working. If you don't give him/her all of the facts, you won't get proper care. If you already know your pattern, even better! Call the doc today and let them know what you're experiencing. And don't EVER feel as though you're bugging your doc! That's what he/she gets paid the big bucks for!! LOL We're talking about your health...the most important thing...it's crucial that all aspects of your care are seen to. If the doc you see is always seeming annoyed with you, for addressing all your concerns, then get another doctor!
Good luck to you, see ya around :)
Heather