Community Forum Archive

My Story

Hello Everyone, I have been reading your stories of how you are dealing with your epilepsy and it has helped me to cope with the things I am going through. I was thinking that maybe by telling my story, it might help someone else out there. Back in about 1993, when I was 33 years old, I started having what I called "my spells". The first one scared me really bad. I thought I was having a heart attack. It was a feeling that started in my stomach area and went up through my head, out through my arms, and down through my legs. It only lasted seconds but left me tired, lethargic, and with a really bad headache. I would have these "spells" anywhere from once a week to several a day. Sometimes I would have a deja vue type of feeling, but most times there was no warning. I could be talking to someone and they wouldn’t even be able to tell that I was having one. I tried keeping track of the foods I ate, the activities I did and nothing seemed to make sense as to what might be causing them. The only thing that sort of seemed to be a pattern is that they seemed to be more frequent around my ovulation cycle (I had a hysterectomy a few years earlier, but still had my ovaries and still had a cycle). I went to doctor after doctor after doctor and explained what these "spells" were like and no one could give me an answer. I just sort of decided it was something I was going to have to live with for the rest of my life. In September of 2003 I awoke to about 5:00 a.m. to my husband sitting on the side of the bed. I ask him what was up, and he said that I had had a grand mal seizure. It about scared him to death. He had called the paramedics and they had come to the house and told him that’s what it was. I couldn’t remember what day it was or what we had planned for the day. We went in to the doctor and they did an MRI and couldn’t find anything. We decided it was just a fluke and it wouldn’t happen again. It was a Friday and on Monday I went back to work. I was an Office Assistant in the Academic Department at a University. It took my all day to figure out how to do many of the tasks that I did on a daily basis. I was still wondering about it so we made an appointment for November to see a neurologist in a nearby city. The night before we were to leave for my appointment with the neurologist, I had another grand mal seizure. So, it seemed that it wasn’t just a fluke. In the next few months I saw a couple of neurologists and had an EEG where they didn’t find anything, but they put me on Trileptal to control the seizures. Amazingly, the “spells” that I had been having for 10 years started to happen less often. When I talked to the neurologist he told me they were probably petit mal seizures. I took the Trileptal and it seemed to be keeping everything under control. I was able to go back to work and took on more responsibility at my job. I would still have the small seizures but only about once a month or less. This went on for about a year and a half, when on March 8th I awoke to my husband at the side of the bed and told me I had had 3 grand mal seizures. I was really sick and got up and went out to the couch and he said that I had a fourth grand mal seizure at that time. I have been on disability ever since. I have not been able to drive and have been to a couple of different doctors before finding a good epilepsy doctor that I am comfortable with. The MRI’s still show nothing but the EEG shows that the seizures are coming from both temporal lobes. We have been trying several medications to try to get the seizures to stop. I have not had a grand mal seizure in almost a year, but still have the small seizures. They first put me on Topamax and that made me really sick. Then on Keppra and that made me really depressed, almost suicidal. Then on Zonegran and that didn’t work. My epilepsy doctor put me on Lamictal and has raised the dosage up to 200 mg a day in the a.m. and 200 mg a day in the p.m. and now is adding Topamax back slowly. I am at 25 mg in the a.m. and 25 mg in the p.m. It seems to be controlling the seizures but I’m pretty spacy. Sometimes I wonder which is worse, the seizures or the drugs. But I know that the seizures do damage to my brain everytime I have one and there is always that possibility of not waking up after one. So, I guess living with the drugs is the better of two evils. I am glad that there is a choice. Many years ago they burned people who had “fits” at the stake. I do get depressed and feel pretty worthless because I have always been out there working and contributing to our family income. That has been hard to get past. But my brain just doesn’t work like it use to. Now, I try to keep myself busy at home and make myself accomplish things so that I don’t feel so worthless. It helps to hear your stories. Sometimes I feel like I’m the only one in the whole world dealing with this. It’s nice to know that there are others out there who might be going through the same things. Thanks for listening and thanks for your stories that help me get through the days. B

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