Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

Comment from: cmazzei, 55-64 Female (Patient) Published: September 25

I have had epilepsy since age 4, and I will be 60 in November and I'm still having seizures. I have gone through so many drugs that I had to write them down just to remember what I have used. When I got my first job, I started a diary of when I had one and what I did. That was in 1975, and I still am doing my diary today. I can tell when they are going to happen, because I always had a bad stomach feeling. I would focus on something by me, start counting in my head and taking deep breaths to make them go away. Sometimes it would work, and sometimes I would have seizure. Today if I'm going to have one, my face feels like it gets flushed, so that I need a cool towel to cool down. When I have them now, I fall to the ground, when in the past, I used to mumble or rub my leg. Lately I have hit my head every time I go down, and sometimes it hurts the next day with a headache and blurred vision. This is a concern to me. What kind of damage am I doing every time I go down, which is about three times a month? I know what part of the month they are going to happen; I always say I have about 15 days of sane, calm days that I don't worry about them. My best memory of my seizures was from 1975-1990; I would have only three or four a year. I was on mysoline and dilatin then, but my dentist said I was ruining my gums and that I better get off that medicine. It has gone sour since then, but I am still here able to maintain my house and yard with the help of my sister. I go to work two days a week and clean appliances. Now I am doing a clinical trial drug. I have had some good days on it, but when we first started it, the dosages of meds had me walking like a drunken sailor on leave.

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Comment from: Steve53, 55-64 Male (Patient) Published: September 25

I began experiencing essential tremors and what I thought were just bouts of confusion. About five years ago, I worked outside in temperature extremes for nearly 40 years, so I just figured maybe I was getting worn out. I was also a hard-core meth and pot user for 18 years before I got clean in 1987. After many misdiagnoses by several neurologists, one finally figured out I was having focal seizures and he prescribed primidone for the tremors and seizures. As of late, however, I am experiencing more frequent seizures and I will be talking to him about changing meds. I wish someone would do a study on the long-term effects of meth use. I just seem to be existing and walking around in zombie mode most of the time. For the most part though, my faith and many friends keep me positive and happy to just be alive!

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Comment from: Harley, 45-54 Female (Patient) Published: September 06

I am a mother of two and am 49. For the past three years I have had six seizures. At first they thought it was cardiac related. I went through all type of testing and still no answers. After my second seizure they put me on kappa, I was fine for almost a year then I had one while I was driving and then a month later at work. They increased my kappa and then put me on a second med Depakote. Am unable to drive or work. My life is so wrapped up in this that I can't do anything without the thought that I may have another seizure. Am scared all the time and I've pushed people out of my life because I am afraid. My daughter will not leave my side because she is afraid I'll have another one and she needs to live her life as she is 24. My seizures take so much out of me. Am always hurt after either staples to the head or black eyes.

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Comment from: gonzo_joe, 35-44 Male (Patient) Published: August 21

I have been epileptic for a little over 10 years. When I exert myself I have a hard time using my legs and arms. In the past I only had seizures at night. In the past 2 years my seizures have been happening in the daytime. My seizures start with my left hand going numb. Then my left hand draws up. Then my mouth draws to the side. That is the last thing I remember. I then wake up with family or friends around me saying I just had a seizure. I have not had seizure control for 2 years. Just this past week I could barely use my legs to walk. Epilepsy is starting to affect me emotionally. I wish meds would help but they do not.

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Comment from: 35-44 Female (Patient) Published: June 05

I have had epilepsy for 31 years. I am 43 now and have been on every medication. Topamax was the first one to control my seizures but I have grand mal seizures. The Topamax affected my memory so now I'm on Keppra. It also controls my seizures but I feel weak and unsure of myself.

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Comment from: Dan Coss, 19-24 Male (Patient) Published: April 10

I have epilepsy but my seizures are only triggered by not having enough sleep. I found I have never had a seizure in the day – it's always been if I haven't gotten enough sleep and had to wake up very early in the morning. All my seizures have occurred between 1 and 5 a.m. in the morning. I also found that even if I don't take my pills, I won't have one unless I don't get enough sleep. Like, I didn't take my pills for a year and a half and never had a seizure.

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Seizure (Epilepsy) - Effective Treatments Question: Please describe effective treatments with epilepsy (seizure disorder).
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