Patient Comments: Seizure (Epilepsy) - Share Your Experience

Please share your experience with epilepsy (seizure disorder).

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!

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes
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.

Was this comment helpful?Yes

Patient Comments

Viewers share their comments

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.

Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on MedicineNet. The opinions expressed in the comments section are of the author and the author alone. MedicineNet does not endorse any specific product, service or treatment.

Alert If you think you have a medical emergency, call your doctor or 911 immediately.

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Health Solutions From Our Sponsors