Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

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: Eadams, 19-24 Female (Patient) Published: September 25

I am a single mother of one. I'm not sure what type of seizure I have. My seizures consist of fainting, jerking, and losing control of my urine. Afterward, I either fall into a deep sleep or have a huge headache.

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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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Comment from: BAIBH, 19-24 Male (Patient) Published: March 25

I belong to a family who has a history of epilepsy. My maternal uncles have had 2-3 attacks. My two brothers and I are currently being treated. Although all three of us have had attacks, I've had the worst--with over seven. All three use or have used carbamazepine. The drug failed to control my attacks, and for the last five years I've been taking a regular dose of divalproex sodium and clobazam. All test reports--including EEGs, CT scans, and MRIs--are normal.

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Seizure (Epilepsy) - Effective Treatments Question: Please describe effective treatments with epilepsy (seizure disorder).
Seizure (Epilepsy) - Lifestyle Question: In what ways has epilepsy affected your lifestyle? Discuss the challenges.

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