Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

Comment from: darrell, 35-44 Male (Patient) Published: February 14

Since 15 I have had seizures, I am now 35. I nearly died twice and came back. First one at 15, it was 8 hours of shaking and convulsions. I have long ones and short ones about 15 minutes. It feels scary at first and weird, then I am unconsciously shaking. I wake up hurt and feel weird and scared but not as much as before it happens.

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Comment from: 25-34 (Patient) Published: March 21

I am 27 years old and I have grand mal and petit mal seizures. I have been having seizures since I was a month old. I wonder if all of you ever see shadows surrounding you or someone else, and various objects, because this happens to me. I am sorry about all the seizures that we experience. It definitely is terrible!

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Comment from: bobbi, 35-44 Female (Patient) Published: July 21

I have not yet been diagnosed with epilepsy but my neurologist feels it is a seizure disorder, not sure what kind. I am going for an EEG and other testing. But from the symptoms I described, like having blackouts and not remembering them, she is concerned and prescribed me topiramate which I will not take due to many side effects.

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Comment from: mary, 55-64 Female (Patient) Published: June 20

I am soon going to an epilepsy clinic. I am so scared because of the exposure of my seizures to others I do not know. My daughter has recorded my seizures which I do not want to see. I am often woken by these seizures. I have many seizures. The most my daughter has recorded was in hospital, 116 in a 12 hour period. I hate them so much. The results of having so many have slowed my motor skills and thinking, plus speech. Inside of my mind I still think like myself but outwardly I speak like a child learning to put words together. I live moment to moment not knowing when this monster will escape. I understand what seizures are but to me they are a torment.

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Comment from: 41967, 55-64 Female (Patient) Published: February 04

I had my first epilepsy seizure at age 18. I was rushed to a hospital which diagnosed me as having a drug problem. When I regained consciousness my parents wanted answers from me. Well, so did the doctors. Guess what, I wanted answers too. My primary physicians sent me for an EEG. I was diagnosed with epilepsy, not drugs. I was first put on phenobarbital. I was having emotional difficulties dealing with the diagnosis. I stopped taking my medications but when the seizures started again, that was my wake. The phenobarbital was not enough so later Dilantin was added. I was always sleepy so phenobarbital was removed. I've been on Dilantin for about 27 years. I see a few of the side effects. My gums have receded, so I have trouble with hot and cold beverages. I get blood work every year to check my levels. I've only had one emergency visit to the hospital. I have grand-mal seizures. It took me about 3 years to get them under control. I still can't do bright flashing lights. I go into a catatonic stare. I try to avoid emergency vehicles. I'm very aware of the onset of a seizure. I get an awe of something is about to happen. My seizures can be quite violent with dropping, head twisting, body spasms and sometimes screaming. I never remember much when I regain consciousness. It's like a feeling that you have a gap in your memory. I'm blessed because the doctors were able to control my seizures with medicines, I had my license reinstated, which was a major hurdle for me. I'm still learning what can trigger my seizures, i.e., child birth, birth control, alcohol. I have a list.

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Comment from: flipping, 35-44 Female (Patient) Published: June 24

I have had epilepsy for 40 years (since birth). I used to have 100/day. I have many different types, tried every pill in the book and brain surgery and now I have a vagus nerve stimulator and I take Gabitril and I used to have them in my sleep. But now I can't see my 2 children that are still living because a lady said anyone with epilepsy is mentally retarded and she gave full custody of my kids to my ex-husband. One of my babies died at the age of 2 weeks old because I had a grand mal seizure when he was in my stomach. My family threw me in my room when I had a seizure because they were ashamed and embarrassed about it, and that's why my auras are a deja vu of feeling like I am all by myself in a dark room. So anyone who suffers from seizures I wish you the best of luck.

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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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