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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 HLTanner on Tue, 2004-04-27 - 02:08
I've had epilepsy almost all my life. The hardest thing for me to deal with hasn't been the condition itself, but the major over-protectiveness of family. Me being female, the youngest and then having epilepsy hasn't helped. Except when I was about 5-7 yrs old I've never had any major side effects that I know of. It's hard to tell when it's a condition that you grow up having. You don't know what normal is. I had one neuro try to take me off all my meds. I went in the hospital with clusters of seizures and broke my shoulder also. That's when I switched neuros after having him for 25 yrs. and not having any problems. I should have spoken up when I didn't feel right about him taking me off my meds, but I thought he knew since he was the doctor.My next neuro after a few years really screwed up my meds and I didn't drive for almost three yrs, but I learned a lot from that experience and that will never happen again. I have a new neuro now. I had to be a guinea pig for a while and had quite a few seizures while being a guinea pig, while trying to adjust my meds. I knew it would happen, but he had to see it firsthand since I was a new patient and he was trying to figure out what worked and what didn't work. But my new neuro has added meds, subtracted meds and adjusted dosages of some meds.Now I finally haven't had a seizure with loss of conciousness in 14 mths and I've been driving again so far for 4 mths. Other than that, my seizures are just weird feelings in my stomach. The closest thing it feels like is butterflies, but it's not. It's in the pit of my stomach and I do not lose conciousness.Even still, the over-protectiveness is harder to deal with than all of this. I can deal with all of this as long as I have the room to breathe.HeatherTulsa, OK
RE: RE: Being new to Epilepsy...
Submitted by fanourios78 on Tue, 2005-04-19 - 19:01
I'm not sure you should call your case a success,Ms. Mersix The drug is supposed to only be a crutch to heal us, not as a dependant, Drugs in my opinion only treat the symptoms, but don't go to the route of the problem. Our conditions are a blessing and a curse at the same time. The only way I can see to defeat this is to have the best health regimen, and meditation, anxiety and stress seem to agrivate our conditions, as well as an abundance of fear and guilt. We must conquer our fears, and regain our confidence in ourselves, I used to feel sorry for myself... then I finally looked around and realized I wasn't the only one with problems. All I see is people having nervous brekdowns left and right, young and old... I don't really drugs working that well. My best advice is to find natural ways to treat the epilepsyand stop depending on drug-dealers masquerading as pharamists Fanouriosp.s. -If anybody wishes to contact me: FANOURIOS78@COX.NET I am only 27 years old, and welcome any advice from seasond veterans of the field, I've been in it for ten years.
RE: Being new to Epilepsy...
Submitted by momof1 on Sat, 2004-04-10 - 08:22
hi Stephane. I have had seizures for 12 years now. It was only 3 years ago that I was given dilantin. Mine happen mainly in my sleep so no-one really paid attention to me. The breakthrough for me was finally know what was going on. It is so much easier to understand and deal with. Rather than waking up either on the floor, covered in bruises, or in the hospital and being told "you freaked out" I could say I had a seizure. This board has helped me so much. It is such a relief to know that someone else can relate to what I am feeling. I still have seizures ocassionally, but now that I understand it is so much easier to deal with. It gets easier. I swear that knowledge and support will make it easier. I hope my response is helpful. I don't want to sound negative. I'm just grateful I have met others who can relate. Take care, Stacey