March 01, 2005

• Much love, patita. I have absolutely nothing helpful to offer, but hang in there. Best wishes to your mother.
• thanks, mct. She's been very levelheaded about it, uncharacteristically calm.
• Same here patita. Nothing helpful to offer but my kindest thoughts for your mother.
• A friend's husband had a seizure at home last year. The biggest practical drawback for them was his inability to drive as the doctors adjusted medication to prevent future seizures. I believe in his case, it took 3 months before he was cleared to get behind the wheel. In the meantime, there were weekly appointments to have medication levels checked, blood tests, and other checkups which took quite a bit of time away from work. If those responsibilities will fall to you, you might want to look at your employer's family leave policy to manage the time away from work and make sure that your duties can be handled in the interim. My thoughts are with you and your mother.
• She never lost consciousness, so the doctors say she's still able to drive. The medication makes her less alert, so she's not persoanlly keen ont he idea. Good call on finding out about medical leave Mickey, that makes sense. I had already planned a trip to see her before this happened. Having it happen long distance is part of the problem for me--my stepfather and siblings are the main caregivers.
• My father was epileptic. For the most part it was something we all just got used to. The medication back then (late 70s early 80s) wasn't as effective as it is now, but it did keep the major Grand Mal stuff at bay. Essentially, up until the last two years of his life, he was almost totally functional and only had the occasional bad day here and there. I don't know how much that helps, but I figure at times like this, it's nice to know you're not alone.
• Long term once her medication is stable, it should theoretically be a non-issue. I had a friend who was diagnosed with epilepsy at 12 after being hit by a car. He was on anti-seizure medication and in the four years I knew him (when he was in his early 20s) he had no seizures and it didn't seem to affect his lifestyle at all, except that he couldn't drink alcohol. I have another friend in the same place as Mickey's friend's husband: he had a seizure and the cause is unknown, so he's banned from driving until he's gone six months without another seizure (which is understandable). They haven't diagnosed epilepsy in his case, though.
• patita, do you live in the U.S.? If so, check out information on the Family and Medical Leave Act.
• One of my high school boyfriends had epilepsy. He swore that he controlled it with marijuana, which may not be an option your mother even wants to consider, but he definitely had less (petit mal) seizures when he had a good supply of weed and more when times were dry. He was kind of a freaky scary guy, it is true, but he definitely, through pot and a lot of mind control, got himself to a point where he didn't need medication. This was in the late 70s, early 80s, and he hated the medication for making him blurry and zonked and miserable - I imagine it has improved, but maybe not.
• surlyboi, that is exactly what I wanted to hear. who else knew that you can get 12 weeks of medical leave in the US? unpaid of course, but that's huge. through a bit of my own research I learned that while the vascular condition is hereditary, how it develops is different by individual (so I'm not especially prone to vascular lesions). all of you monkeys rock--I needed a ping from the ether and you responded graciously. this makes things more stable now.
• mygothlaundry--funny, I did a bit of research on marijuana and epilepsy (figuring it helps with all kinds of other neurological stuff) and found that it might not just be the THC that helps. it looks like a number of the big medical marijuana cases have been brought on behalf of people who use marijuana to control seizures. She's on Dilantin now, and they are adjusting the dosage. "Blurry, zonked and miserable" seems to fit the description.
• I know several people who would love to get your mom good and stoned, if she decides to take that route. Hell, I'm pretty sure that at least a third of our members would.
• oh, that would be sweet!
• I don't have anything to add medically, but wanted to also send good wishes your way (and your mother's way). All I know about epilepsy is when Caitlin was diagnosed with in on Degrassi Jr. High, and had a seizure at a sleepover. Then she was really depressed because she was "different" from the other kids. I think there was a lesson in there somewhere about her mom getting over-controlling and then them realizing that that didn't help the disease, and that Caitlin had to basically accept it, take her medication, and things worked out okay. I realize that was a pretty lame anecdote.
• advice
• I'm surprised they gave her dilantin; there are a lot of other meds out these days that have far fewer side effects (lamictal, keppra (sp?), even tegretol is often better than dilantin...). I've been living with epilepsy for closing in on 20 years. I had a bad patch my second year of college, when I was about 19, and I've had my life interrupted in minor ways here and there (I still get partial seizures about once a month these days), but all in all, it's really not that big a deal. Your mom might want to note whether her episodes coincide with her menstrual cycle, as that is quite common for women (then she could just be a little more prepared for possibilities during that time-). It's a pretty mysterious disorder, really, since they don't quite know what causes it or what about the meds stop it. Pot as medicine is a common claim, although personally it does not help me (I think it tires me out a bit and maybe makes things worse-). Seizures also can range from weird hallucinations to blanking out to full on grand-mal... I have had all three kinds (usu. "partial complex" which is hallucinations and momentary loss of consciousness without full seizure). Other people are more freaked out than I am - I think it's worse to watch than to undergo. From my end, it's mildly interesting (sometimes); a pain in the ass (it's tiring, causes headaches, and can interrupt/forestall whatever you're trying to do); and generally in the background these days (I'm used to it as a fact of life). Feel free to email me if you have specific q's (my email's in my mefi profile, same username).
• oh sorry, just realized you noted the seizures are a direct result of a vascular lesion. I don't know if hormone cycles will play a role when the cause is specific like that. My knowledge is all regarding the "cause unknown" variety of epilepsy.
• I shared a house with a bloke who went off his tablets to control his epilepsy (grand mal) with meditation. He had a fit in the bath. We (house-sharers) had to break down the locked bathroom door and drag him out of there. He had a bike accident at six in the morning. We had to get out of bed and pick him up. He had a fit while hanging onto the clothes line. He had a fit on the stairs. He had a fit in his bedroom. He had a fit in the front yard. He was eventually persuaded to go back on his medication, as we had become extremely tired.
• Just talked to mom and she's home from the hospital now. Turns out she won't be able to drive, as her insurance company will not cover her for 6 months. The Dilantin is temporary, and they will be trying another medication in 2 weeks. She had a hard time riding home in the car because "it felt like there was too much air" around her head. Got a better prognosis on potential future surgeries too (if there's ever a hemhorrage). thanks again for the input, be it from teen dramas, cartoons, personal experience, or what have you!
• Hi there patita, just checked in today...I'm epileptic...have been for 10 years now...and a veterinary dr. Plenty of personal and professional experience with seizures...and the research current and past is a bit of a hobby with me....e-mail me if you want to chat. Sorry about your Mom, but it sounds like they are starting down the right road with her.---docels
• No useful input, but lots of good wishes to you and your family.
• Patita, epilepsy is different in everyone, but current treatments make it a manageable situation. I have had epilepsy for more than 20 years, the "unknown causes" variety; it got better when I simply started listening to my doctors and agreed to take my medicine. Have you checked with your mom's city local epilepsy foundation? That is a good place to go and learn about support groups, practices, medications etc. It helps to find other people with more experience in the management of epilepsy, and that have learned to cope with it. Again, best wishes to you and your mother. Email me if you want some more info.
• I have been taking Dilantin since 1974 when I was diagnosed with grand mal epilepsy. For the first year or so I was feeling somewhat "fuzzy" but that has passed. I haven't changed to any other medication because I haven't had any significant problems. (The hardest part was losing my license, dropping out of school, and moving back in with my parents for a year, until it was determined I could drive.) Dilantin toxicity will make a person tired and dizzy, and you have to watch out for drug interactions, I hope they can stabilize her blood levels and keep her on a therapeutic level without any major issues. Feel free to contace me via email as well.
• Welcome, Runcible. I like saying your name. Runcible Spoon. Runcible. Runcible Spooooon.
• thanks for offers to contact via email (mdn, docels71, Camilo and Runcible Spoon)... I will most likely make use of this in the next couple of weeks, especially after I visit. the natural progression of this all would for the monkeys to get stoned and dine on mince and quince, right?
• My older brother has epilepsy due to a birth defect (which has also given him memory problems). Unfortunately for him, he's tried just about every medication to no avail. He even went as far as to get a vagus nerve implant to try to counter the seizures. It worked for a while, but lately has stopped having any effect. The biggest pain for him is when he has grand mauls. He never used to have them, but lately (the past two years or so) he's been having them all the time. They seem to be related to stress for him, but just about anything can bring them on. He hasn't hurt himself seriously, but has come close to it when he hyperextended all of the muscles in his leg (to the point just shy of ripping them apart). He couldn't walk on it for a week or two, and had trouble with it for nearly two months afterwards. As far as using pot to help epilepsy, my brother claims it's one of the only things that has helped him thus far. I think one of the biggest things is it relaxes him, lowering his stress levels. A lot of times the medication works for people, as will probably be the case with your mom. But for us, it's just something we've gotten used to. It took my brother a long time to do accept it (he was diagnosed at 12 and is 23 now), but he's getting there. For me, it's just part of every day life; if I'm at home, and I hear a loud crash, I run and make sure he's in a position that he won't swallow his tounge, or bash himself on anything. There's not much else to do other than that.
• an update: she went back into the hospital only a few days after getting out, and this time stayed 2 weeks. She came home a few days ago and has been napping frequently and trying to avoid stress. Little improvement in the seizures with medication (Dilantin and Trileptal)--they were once every 10 minutes, but not they are once every 20 minutes or so. She has found a surgeon who has experience in operating on arterio venous malformations and calcifications, and also a specialist in using the gamma knife.
• So sorry, patita. Hang in there. I can't imagine how difficult all this must be for all concerned.
• May she have a full and speedy recovery, and all the best to you and your family, patita.
• oh, yes, patita. I hope every thing turns out well.
• My thoughts are with you and your mom..
• thanks everyone, it means a lot to get encouragement. I've mentioned this to my mom and she's very touched by the fact that people care. She's got an appointment with a neurosurgeon in Boston on Friday, so we've got our fingers crossed that she can help us. Less than a month ago everything was fine--just goes to show that things can happen very quickly to change the course of one's life.
• It's true how abruptly changes can come. Hang in there; we're all rooting for you and your mom.
• Best of luck to you and your mom with the neurosurgeon. I'll keep my fingers crossed for good news.
• Crossing fingers, toes and eyes jwnnjc wocwos 03033nn.
• Koko, you're crossing too much or having a sympathetic fit yourself!
• The neurosurgeon appointment in Boston is actually next Friday, and it will be with a team of epilepsy specialists. This is good news. Thanks again for your support--my mom is touched to hear that folks care, as it's only when she's interacting with others that she feels halfway normal. I thought monkeys might be interested in the research undertaken by Dr. Golby to map the brain. Heck, I think it's cool that they refer to the working bits as the eloquent cortex.
• Epilepsy: fighting myths and saving lives
• great link, homunculus, thanks. I didn't know this thread was here either; it's nice to find all this information. I was diagnosed with seizure disorder, which is basically science-ese for epilepsy, last year, and I am still learning how to manage it, and my life around it... there is no obvious cause in my case, my brain just has abnormal electrical activity.
• My father had epilepsy caused by a brain abcess when he was 47 in 1957. Most of his seizures were of the Jacksonian type, which is pretty mild, but he did have some of the grand mal type. In spite of the other damage caused by the destruction to his left brain (partial paralysis on the right, blindness in half of each eye) he taught himself to walk again within a year of the onset, worked in his grocery store till he retired about 20 years later, then put in a huge garden where he grew and sold onions, tomatoes, asparagas, strawberries, eggplant, figs, and on and on. We'd have to go pick him up occasionally, but nothing stopped him. He died at the age of 90, but not from epilepsy related causes, and, I think, loved every minute of his life after he got over the shock of his disability. (That took several years, and was difficult for the rest of the family.) His determination and love of life were the same before and after the onset. I guess what I'm trying to say is that epilepsy can be dealt with.