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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 Da on Sun, 2006-12-03 - 09:26
Thank you for responding! It feels so nice to know I'm not alone. I have found one article that discusses to some extent my question about doing nothing: http://www.epileptologie-bonn.de/upload/download/pdf/ChronicTLEAndMemory.pdf The upshot in this article is that we lack research, and can't quite disambiguate decreased memory in TLE from the effects of aging. Hmmm, so I still wonder. There does seem to be evidence that TLE can lateralize--basically spreading from one temporal lobe to the other. This is now my latest fear, and one which I'll start to dig up info on. I love the internet. It feels so empowering, being able to sit at home, in Thailand, and research my own condition and connect with others who are facing the same thing. I would be lost without it. My seizures don't seem to have increased over the last year (before I was medicated), and they are exactly the same every time. I totally disconnect for a minute, right hand clenched, then come back incoherent for another 1-2 minutes, and then feel alert again but tired. My seizures started after a horrible migraine I had a little over a year ago. I was at work, and the migraine hit. All I remember was not being able to see, my sight went dark, and I was nauseated, and the migraine so painful, and then I passed out. Friends took me to the hospital. After that episode I began having these seizures. I never had a migraine like that first one again, but I wonder what the connection is, if any, between that first migraine and the onset of my seizures? The migraine was horrible. The seizures, if they stay like they are now, I can live with. I do miss driving, though. My motorbike is to me what cars are for americans: freedom! independence! But alas, I can't ride it anymore. I like the idea of acupuncture... I'm going to consult someone here about that. Thank you all again so very much for responding. My life has been turned upside down, or at least sideways, by this news. I still haven't quite digested it. In a way it's almost a relief... I was so worried about what else it could have been-- tumor, AVM, etc-- that to find out that I am a textbook example of TLE is in a weird way almost a relief. At least they know what it is! Certainly my husband thinks I'm weird. Goodnight, from Thailand. Da

Re: Is doing nothing an option?

Submitted by gwen48 on Sun, 2006-12-03 - 09:47
Dear Da: First off, you will gain knowledge/information from the internet because of the simple fact that other people share your same problem. More than likely your doctor will not give you the same, and he has other patients waiting for him on a rush rush basis. Furthermore, he will not "offer up" any information unless you ask the right questions. I do not want to sound down on Doctors, but they are what they are, there to offer you prescriptions, and monitor those meds. From my own almost forty years of having a seizure disorder, it was not until the age of the internet that I learned most of what I know about my seizures. By the way, I have two grown children who are healthy from birth, and I took seizure medication while pregnant. Think about your quality of life before you decide to forgo medication. Just interjecting some food for thought, best of luck to you. Gwen

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