Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

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: Barnes, 55-64 Female (Patient) Published: November 01

I was diagnosed with epilepsy after I had my first seizure when I was 6 years old. I have been on numerous medications, from Dilantin, Depakote, Tegretol and many others over the last 51 years. At the age of 20 I was able to deliver a healthy son but have not been able to drive and cannot get employment, because my seizures escalated and I was laid off work. I take Dilantin 200 mg 4 times per day plus Tegretol XR 200 mg 4 times per day and clorazepate 7.5 mg 4 times per day. Even though I am under a neurologist's care my seizures have not stopped. I have a minimum of 10 seizures per day. The clorazepate pills that I take help stop any extra seizures that I may have late in the afternoon. I call it the "magic pill". I really would love to have a normal life as I am confined to my home and have to rely on my husband to take me to any appointments I may have. With all this medication I have to take I have added a lot of weight and now I have arthritis because I cannot go out on my own and exercise.

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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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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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