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Is doing nothing an option?

Sat, 12/02/2006 - 04:02
Hi, my name is Da. I'm from Thailand, and have recently been diagnosed with temporal lobe/hippocampal epilepsy (left side). I have partial complex seizures, once every week or two, in which I stare off into space and my right hand clenches up. My MRI showed lesions in the left temporal lobe and hippocampus, probably as a result of oxygen deprivation when I was born (umbilical cord around my neck). Or maybe tapeworms. I don't know. I've only had the seizures for about a year, and the only real impact this epilepsy has had on my life so far is driving. When my husband saw me drive my motorscooter off the road and plunge into a ricefield, he took away the keys and said we'd work transportation out some other way. My neurologist has put me on Trileptal, which makes me dizzy, but so far it's a low dosage. Too early to tell if it works or not. In the meantime I have scoured assorted websites looking for information. Most of my immediate questions have been answered, but there's a few questions that don't seem to be addressed, and I'm hoping someone on this site may point me in the right direction. 1. What if I do nothing? Will partial complex seizures destroy my memory or language abilities? If I get pregnant, will such seizures cause hypoxia in the fetus? (If we decide to make me pregnant, I would rather not be on any meds.) Will my seizures become bigger/more serious? 2. What's the low-down on trileptal, really? Classified by the FDA as 'C', 'not enough research' to assess damage/birth defects. Are there any current research programs underway that could give us more information? Maybe they have working papers or something? My neurologist here doesn't give me the kind of detail I'm after, and I'm not a gambler. 3. So much talk is in odds--percentages of chance for side effects or birth defects. But how do we interpret this? I mean, seizures will have x% possibility of causing problems, and the meds will have y% effect, does that mean we add x+y? I'm not too good at statistics, and it's hard to assess just what sort of risk we are really looking at here. My neurologist so far has been stand-offish talking about pregnancy, just reciting these kinds of statistics, but I think that's a common thing here in Thailand where abortion is illegal and hence doctors avoid discussing anything that may lead to it. 4. Can trileptal or any other drug cure me of this epilepsy, or do I have to be on drugs all the time? My doctor says the success rate of drugs for my type of epilepsy is only 10%, and that surgery is likely. That sounds grim, although it hasn't sunken in yet. So I can still write about it glibly. To be honest, if possible I'd prefer option 1, do nothing. So I don't drive, big deal. My husband, typical male of our species, wants to do all the driving anyway. But if doing nothing will damage me down the road, or if it will cause problems in a pregnancy, well... different story! Thanks for reading, and sorry for posting such a long message. I'm new to all this, and although I don't feel traumatized by my diagnosis, I have this uneasy feeling, like I'm on the cusp of hearing bad news from my doctor. I want to educate myself fast so I can squeeze better information out of him in my next appointment. I can read pretty technical stuff, and I like detail, so I'd be grateful for any leads for answers to this stuff. Thank you, Da

Comments

Re: Is doing nothing an option?

Submitted by missemmy on Sun, 2006-12-03 - 00:00
You had alot of questions so here are alot of links to help find you some answers. www.efa.org www.epilepsyontario.org www.aesnet.org http://www.ninds.nih.gov/disorders/epilepsy/detail_epilepsy.htm http://www.lamictal.com/epilepsy/patients/about_seizure_disorders/treatment_goals.html http://www.aesnet.org/Visitors/PatientsPractice/aed/index.cfm www.trileptal.com www.epilepsy.com http://www.epilepsy.com/info/women_pregnancy_medications.html http://www.epilepsy-101.com/ www.keppra.com http://www.epilepsyfoundation.org/answerplace/Medical/treatment/surgery/

Re: Is doing nothing an option?

Submitted by scorpio on Sun, 2006-12-03 - 07:44
I cannot make any personal comment on trileptal or pregnancy since I have never taken the former and, being male, am unlikely to become pregnant but have you thought of trying a course of acupuncture? There should be lots of practitioners in Bangkok. An acupuncturst in Singapore was the first person to control my epilepsy, twenty years ago. Nowadays, the 200mg/d Lamotrigine/Lamictal I take stops me having seizures but I would not hesitate to try acupuncture again if things got worse. Hope things get better. Chris

Re: Is doing nothing an option?

Submitted by debmvernon on Sun, 2006-12-03 - 08:05
I am just beginning with medication for epilepsy myself. I started having dizzy spells, then fainting and finally, seizures, before the Drs. found out what was wrong. When I started having the seizures it was rapid. I went from 1 to 5 a day in a matter of weeks. So please do not try to go the doing nothing route. It will make your life miserable. With each seizure, they became more severe. Every seizure medicine has some side affects you just have to find the one with the least side affects for having healthy children. I have a brother, and girl cousin bothe with healthy children on seizure meds. You just have to find the right one. Good Luck Debra M. Vernon, South Carolina, USA I can not drive for over 6 months either, the state law, it stinks

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