Epilepsy, dating, and thoughts of having children

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Hi everyone, I'm a 38 yo single female epilepsy patient in Oregon. Aside from the fact that I've suffered from epilepsy for about 18 years, I lead a relatively normal life. I'm in veterinary school, suffer simple partial (continua?) psychic seizures that cause cognitive deficits, and also suffer from the typical psychosocial issues many patients with epilepsy have problems with. I've always wanted to have marriage and family if I met the right guy. As time has passed, I've matured, gotten better at relationships, learned a ton about epilepsy and how it affects me, and watched my symptoms become gradually worse and more persistent, albeit milder than many people. I worry about successfully practicing medicine, a bright future assuming I maintain the cognitive function I need to do so. I've watched my cognitive problems become worse, as I said. Still, I'm highly functional, and no one else can tell that I have a "buzz" or feel a little confused a lot of the time. I'm completely able to understand concepts and problem solve, but I'm a little slow on the uptake. I'm somehow, miraculously, able to "work through it" almost all of the time, and school has only set me back a couple times due to my epilepsy when the stress and sleep deprivation caught up with my brain, so to speak, during test taking times. I've started thinking about dating again. I had a breakup about 2 years ago. He wasn't supportive of my career, and had a negative attitude about epilepsy and having kids, which I'd never considered before. My mother is also epileptic, has always been well controlled, and she hasn't had the problems I have had with refractory simple partials. I've always dreamt of having a family, and I worry that men I date will have the same attitude. There's also increasing evidence that offspring of women with epilepsy have a much greater risk of cognitive impairment, which causes me to questions the ethics of my having my own children, knowing what I do about my own condition and the risks to a child, even if the pregnancy and birth go fine. This whole issue hugely impacts my "dating strategy". I've always made it clear that I'd like to meet someone who'd like to have a family, and now...??? Anyway, I wonder if there are others out there who struggle with some of these issues. How have you coped? What are your opinions about what I've written? Thanks for reading my vent..I hope this is a good place for it! Best, Lil

Comments

Re: Re: Re: Re: Epilepsy, dating, and thoughts of having childre

Submitted by liliansabina on Mon, 2007-04-09 - 19:22

Hey A, How's it going? I'm having a better week, I think. So much of my bad feelings are sheer anxiety from being "high" all the time. I am "high" all the time (like, I feel like I'm on cold medicine a lot). I'm on Keppra right now. OK, so I had a grand mal (tonic clonic) seizure when I was 21, got put on AEDs (Anti epileptic drug- this is common lingo you'll see). First dilantin (phenytoin)- caused a rash, then tegretol (carbamazepine)- caused sedation and cognitive (thinking) deficits (slowness/problems with memory, etc...), the depakote (valproate)- caused same symptoms as tegretol. Finally, after 15 years with no tonic clonic seizures, but lost of horrible (as mentioned above) side effects, I decided to go OFF AEDs (depakote was what I was on). I was 34, and fed up with being mentally fuzzy all the time, AND the fuzziness was getting worse! So I went off, and most of the fuzziness went away for a few months. Unfortunately, it returned, along with simple partial motor seizures (muscle lurches while conscious). This means that I probably have some sort of underlying brain problem causing the mental fuzziness, and it could even be actual simple partial seizures. We don't know yet- I have testing in June. So, to try to control te fuzziness and motor seizures, went on Keppra. It worked great for a few mos, then I started getting the fuzziness back AGAIN. So this may be a permanent thing, we just don't know yet. I may be one of those many "refractory" simple partial patients (which means that I mostly get simple partial seizures, almost never lose consciousness, but am really hard to control with AEDs. I'm rootin' for good news in June. Now one thing I should really emphasize is the word "catamenial". This means that seizures are affected by female hormones- common in women, and well known to happen, but poorly understood by the medical community. They think progesterone inhibits seizures and estrogens encourages, but things are changing about all that in the research community. You might want to pay attention to your own patterns because in my case, seizures changed with AGE (have gotten less controlled, I think) and hormone changes. Something to pay attention to, at least. The other thing I decided to do was stop eating foods that they've found might exacerbate seizures- wheat gluten and cow's milk products. Check out the book "healing epilepsy naturally" for more info. A VEEG is a video EEG- you get to be at the hospital for 3-6 days, mostly off AEDs, with a constant EEG that's also videotaped! Woohoo! That's in June for me, and the point is to figure out exactly WHERE in my brain the problem is. They also do an MRI (to look for scarring in the brain, or tumors), and a PET scan to look for chemical imbalances in the brain. Interesting stuff! Portland sounds like fun! I can't wait to move back next year after school! I've gotta get back to class! You can also IM me on yahoo if you like- "liliansabina"

Re: Re: Re: Re: Re: Epilepsy, dating, and thoughts of having chi

Submitted by autumn18 on Tue, 2007-04-10 - 17:49

Wow Lil, I thought I had it bad with a day full or MRI's and an EEG treatment, but yours sounds much much worse.I have had an VEEG before, they told me to take books, magazines (reading material) art diary (I love to draw) so basically anything to keep me awake for sometime. I stayed awake until after lunch then i was asleep til I was done. My room was qutie small. One bed, a tv, two chairs, the machine, and a small bathroom. I was there for 12 hrs for the first one and 8 hrs for the second one. I have never had an AEDs. I'm on the Tegertol and Keppra combonation. My seizures are caused by the scar tissue located in my left side of my brain, that small spot sits right on the suture of my brain. I only get fuzzy right before I have a Complex-Partial seizure because my whole right side of my body goes numb. I hate having these. My Grand-Mals I just go totally unconscious then I can tell you who you are when I finally "COME BACK" to myself. I once had a dr that wasn't my regular dr tell my mother that I was faking having seizures. The reason why is because I could tell him what I was doing up to the point of the seizure but not what I was doing in the seizure and I could tell him what I was doing, Where and who I was, and my parents name even though it took me at least 5 minutes to spit all the correct answers out!!! I still hate that dr to this day. I'm glad you kinda explained maybe why my womenhood cycle is a wierd problem. But it explain this....I have had sharp pains that floats around my rib cage, stomach, back, and even circles around me. Like if I move or lay a certain way then it moves to give me more pain or even break me down in HUGE crocodile tears. Heating works for a while but not all the time. What the heck is that?! My dr can't tell me what it is with a CT Scan or a Ultrasound. Weird huh? I have quite the cycle or "track" we should call it. It cycles every 3 months with begining, middle, and end of the month. My doctor told me if I ever have children that there is a high chance that at least 1 of my children will have them, and that I will be at high risk to have them while I'm pregnant. Which can be a little scary. My mom could tell you just about what day I was going to have a seizure when I started to have them at 19 months old. It would be close to a month a part. I would turn bright blue and after a few moments return to a pale color (like a sick child). That is why I'm rushed in to see the dr when I call in sick. I stopped at 3 yrs old then off my medication at 6yrs which was phenobarbitol (strawberry sryup to wash it down with, that is why I hate strawberry sryup now!!!!) When I hit the age of 11 they came back strong and heavy. I got to the cycle of 5 to 6 months but recently I haven't had 1 for almost 2 yrs. Woooohooooooo!!! I hope I can go 2 yrs and 6 months then my meds are either reduced or totally gone. I'm just scared and upset that they can come back while I'm pregnant. (; Autumn ;)

Re: Epilepsy, dating, and thoughts of having children

Submitted by Gina Marie on Wed, 2007-04-04 - 23:33

Hey Lil, You said your mother has epilepsy, right? And while you ended up with it too, you certainly don't seem cognitively impairment, you're in vet school and that's amazing and well above average by most standards. That guy you broke up with, he was wrong all the way around. How someone can date a person studying to be a vet and NOT support their career is beyond me. He was just ignoring all the important things about who you are, I would hope that if a guy really loved you, he'd accept the whole package and work with the parts that might need compromise. Least I hope that for myself too. But you're right, having a kid is a serious issue when you have any illness, esp. one that can adversely impact the baby. I know it's certainly something that I've thought about alot, I've come to the conclusion that I'd be willing to adopt or foster a child, but not have my own. Better yet, finding a guy with kids of his own who either doesn't want any more or wouldn't mind fostering or adopting, is my goal. It's not really a change in strategy, so much as a tweak. :) My strategy is to work on finding happiness in my life now and when the right guy comes along then that'll be the bonus, if he doesn't, then I've already got my purpose in what I'm doing, in myself. However, I think he might be taking his time lol. Good luck on school and the guy.