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Being new to Epilepsy...
Sat, 05/22/2004 - 23:15Topic: Medication Issues
Hi, my name is Stef and I'm 28. Since I'm new to the notion of having epilepsy and that I only started taking 300mg/day of DILANTIN a few days ago, I'm wondering this :Are all the stories on these forums the unfortunate stories? I mean, are there any success stories for people taking DILANTIN or other medication?I'm not going to let this disorder win, but I would like to know if there is light at the end of the tunnel. I only get a few seizure per month and they're always while sleeping.Anyway, just looking for some experienced input in this.Thanks,- Stef.
Comments
RE: Being new to Epilepsy...
Submitted by Mersix on Wed, 2004-04-07 - 12:43
Hey Stef!I am one of the success stories, but I owe some of my success to this site. There are a few of the writers that are here on a regular basis and you have gotten advise from a couple of them. I have minor seizures in comparisn to many people who read and write on this site. Mine are considered grand mal because I loose conciousness. But I have a distinct aura 30 seconds to a minute before hand, then it feels like my energy is being sucked out of my body, then I wake up after about 30 seconds to a minute in a dazed, confused and disoriented state. They started because my father had to sell the family property to pay for his nursing home care. I have never gotten what that was all about. They begin for all sorts of reasons. My first nuero couldn't find anything on the MRI, and that was the end of his envolvement. My regular doctor thought I was having anxiety attacks. Finally I found a doctor who said he had never encountered my symptoms but to try this drug. Dilantin didn't work for me but Carbatrol did. I got my license back and as long as I take my medicaton I don't have seizures. I figure the medication is a fair trade for a normal life. I am also 50 years old and medication is starting to be a way of life. But I research exito-toxins, food allergies and information related to seizures all the time. They are individual for each person. I think you have to develop a relationship with the discorder. Good luck,--Mersix
RE: Being new to Epilepsy...
Submitted by stefvie on Wed, 2004-04-07 - 18:29
Thank you all for the words of encouragement.I hope my message didn't give the impression that I was giving up! I've educated my self plenty in the last few week (even before being diagnosed) on the subject. But the one thing I failed to know was the success rate. And, when I started reading some of the posts present on these forums, I started wondering. I'm not saying all posts are negative, but, it did give me the impression that there were more Negative than Positive. Of course, like everything in this world, people seems to always report the sad stories.Well, I'm still glad to be part of this community. I'm sure I'll be able to get some guidance from some of you. Like I said in one of my post, all my seizures seems to be nocturnal. With the exception of a few 'complex partial seizure', or so I think anyway. I hate to say this, but the feeling itself when I get the partial ones are kinda neat. But, since it's random and part of a bigger problem kinda make it suck.Also, I've had my license since the age of 16 year old but bought my very first car just a few months ago... which really sucks.Anyway, again, like I said, my post wasn't a 'end of all things to come' kinda of post. :) I'm quite well educated on the subject and I find that I've already made peace with the disorder itself, I just hate the 'not driving' part.Thanks,- Stephane
RE: Being new to Epilepsy...
Submitted by happycat231 on Wed, 2004-04-07 - 10:18
Today is my first time to this site and your question caught my attention. My name is happycat231 and I am 43 years old. I started having seizures after my daughter was born but like you most of mine happen during sleep or at least that is when they show up on my EEGs. I too can look back and see that I have had seizures for years. I have had 3 rounds of grand mals since being diagnosed in 1995. I think that there is light at the end of the tunnel. So hang in there. I too started out on dilantin and took it for several years. Then I took topamax and finally tegretol which works great for me. I am under good control and can drive again. I have a life again. Also my nephew has had seizures since he was a baby and really bad ones. Now he is under control and has just passed his driver's permit class. So yes there is light at the end of the tunnel. I am a mother of 4 and a grandmother to a beautiful 6 month old girl. I hope that I have helped you in some small way. If you would like an email friend, then just let me know.