Patient Comments: Seizure (Epilepsy) - Share Your Experience

Question:

Please share your experience with epilepsy (seizure disorder). Submit Your Comment

Comment from: Lilly88, 25-34 Female (Patient) Published: June 27

It was a very normal day and then I woke up in the hospital not knowing the names of my boyfriend and sister right in front of me. I didn't know how my clothes got on me, why we didn't go to church, nothing. He said I shook on the ground for 12 minutes and didn't speak for 19 minutes. The paramedics came up and I didn't come to for another 4 hours. I woke up with a puke bucket not knowing anybody. I've had petite mal seizures my whole life, this is the first one of this kind I've ever seen.

Comment from: confused, 45-54 Female (Patient) Published: March 24

I recently have been told by two specialists that I am having epilepsy seizures. I have an undiagnosed clotting disorder that I have been battling for years. During an episode that I thought was a transient ischemic attack (TIA) an EEG was performed and it was abnormal. Two months later I had a follow-up EEG and it was also abnormal. Fortunately I was having symptoms both times. I have since gone for a sleep deprived EEG and am awaiting results. I was not having symptoms at the time. I have had several pulmonary embolisms in the past and had a stroke in 1995 so these episodes I have been having we thought were TIAs until just recently. I do have episodes of staring and blinking. I am aware during this time but unable to respond. I am so confused as I might possibly have two different issues going on or maybe it is an autoimmune disorder that can affect both clotting and seizures. The specialists keep bringing up the word lupus but to date I have not received a diagnosis and with my most recent appointment with my neurologist he said that now he feels that I may not have lupus. I wonder if anyone out there has anything similar or at least some information to help me shed some light on this situation. The TIA symptoms I have been having include dizziness, weakness on my left side and slurred speech. After the episode I get very tired.

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.

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!

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.

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.

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.

SLIDESHOW

What Is Epilepsy? Symptoms, Causes, and Treatments See Slideshow
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.

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.

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!

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.

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.

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.

QUESTION

If you have had a seizure, it means you have epilepsy. See Answer
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.

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.

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.

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.

QUESTION

If you have had a seizure, it means you have epilepsy. See Answer