- Diseases, Disorders & Conditions
On Living With Epilepsy
I have had epilepsy since I was a child. I can't remember at what age it started. It first showed itself by causing me to flutter/roll my eyes and shake my head. The sunlight will trigger it, especially if I am very tired. The funny thing is that, while I should avoid facing the sun whenever possible, I find myself pulled to look in it. I can't help it, my head will turn to face the sun and I am unable to stop it. The only way I can have any control over this is by always wearing sunglasses when I am outside.
I was not officially diagnosed with Epilepsy until I was older. I think I was 18 or 19. Before that, I did go to a doctor and asked to be tested for Epilepsy, but he told me they could not test me until I had a seizure. This did not make sense to me, but there was nothing I could do about it. After I spent 5 months in Yellowstone Nat'l Park, I had a bad seizure. I had gotten home around one A.M., my grandparents picked me up and then we stayed up for another hour or two talking and catching up on stuff. I got up a little before 7 A.M. because I was anxious to see my dog whom I had so missed. Thank goodness I went to the bathroom before heading out. I had just reached the end of the driveway when grandpa stuck his head out the door and called me (he was going to ask me to bring in one of his frames from the shed). I turned to look at him, and then...all I remember is feeling like my muscles went completely relaxed and I fell. Every time I tried to get up, they would fail on me and I would fall again. Then nothing. I woke up in the hospital emergency room. At first I was confused. I am always very groggy after a seizure and must sleep. However, if I have lost consciousness, then I am not so groggy, but the first few minutes are always confusing. I remember the doctor asking me if I knew I had epilepsy. I said I thought I did. HE started to get upset at me and asked me if I knew why hadn't I seen a doctor for it. I told him I had but was told I couldn't be tested without first having a seizure. He hit the roof...I sure didn't want to be the doctor who told me that.
I was sent for an EEG. He told me I had Juvenile Myoclonic Epilepsy. I will add a link below if you want to learn more about it. He put me on Dilantin. I think I have remembered the proper medicine. Anyways, I took it for several years. The thing with Dilantin, and I am sure probably other epilepsy medications as well, is that your blood must be checked often to make sure you are taking the right amount. If you don't take enough, you will have seizures...and yet if you take to high a dose, you will also have seizures. Dilantin also plays havoc with your gums and causes hair loss.
Later when I was around 26 I went to another Doctor (i was made to because my primary physician did not believe me when I told her the sun did not effect me when I was in a car. She felt I should not be allowed to drive, so she told me I had to see a neurologist or she would revoke my licence), and was again tested. That test proved I was safe to drive...but it uncovered something else. It showed that I was having constant seizures in my head that I was not even aware of. That was the reason I would flutter/roll my eyes when in the light. The Doctor changed my medicine to Valproic Acid, or Depakote. I took this until just a few years ago. The major side effect of that medicine is it causes weight gain. My latest Doctor had me see another neurologist, who changed me over to Topirimate or Topomax. I have done well on that medicine.
I have noticed through the years that the way my epilepsy shows itself changed as I aged. The first signs of it were simple jerks and fluttering of my eyes and shaking my head. Next came actual seizures. I never really noticed the Aura (a warning feeling that you are about to have a seizure) until the seizure I had after Yellowstone. I remember that morning having a feeling that something was not right, almost a feeling of impending doom. But since I had never had that feeling before (or just never noticed it) I did not realize what it meant and so ignored it. I have always experienced the jerking, especially when I am tired. One morning when I was in my mid to late twenties, I stepped outside carrying an egg in each hand (I was taking them to my boss's daughter down the street) and just as I stepped outside, I felt as if someone had rammed me in the chest, shoving me back inside the door. I dropped one of the eggs on the concrete porch (it was winter and it soon froze). I had never experienced that before.
People with epilepsy need their sleep...It is imperative they get adequate sleep. That is hard to do when you are also suffering from insomnia. A year or so ago, I had the worst time getting sleep. I went a week with no more than one or two hours of sleep a night. For the second time in my life, I got to the point where I simply could not think and had great difficulty talking. Sometimes I could hear someone talking to me but was unable to make sense of the words. When I tried to answer, my speech was slurred and I was unable to get my thoughts, scattered as they were, to reach my tongue. I knew it was time to see a doctor. I asked for something to make me sleep. He gave me something (can't remember what it was) that people took for allergies. I went home and took one pill. I slept for three days straight except for using the bathroom. I went back and asked for something not quite so strong. I realize now it wasn't so much the strength of the medicine as that it helped me into a sleep state and my body took it from there, trying to catch up on the sleep I had lost.
In the years of having Epilepsy, I have learned that there are many types. One type is called Narcolepsy. I saw first hand how this can effect someone when I lived in Tucson, AZ. Nearly every day on my way to or from work, around one particular block, I would always see a homeless man pushing a grocery cart full of his worldly goods. One day, I saw him standing at his cart, but he was leaned over it so that his upper half lay on the cart. I was stopped at a stop light, and the whole time I was there he never moved. I thought then he had Narcolepsy, but it was only later as I thought about it that it came to me he was probably homeless because he was unable to get a job do to his epilepsy. Not every one is able to get on disability.
Even my dog has seizures. She has had them a couple of years now. She has a seizure maybe once or twice a year. So far we do not know the reason for them. My uncle had a dog that had epilepsy that she had to take medication for. There are many things that can cause seizures in animals but are not epilepsy. My mothers cat had two before she died of kidney failure. Epilepsy is part of why I am on disability. The other reasons are Fibromyalgia and a super bad memory. Not everyone who has Fibromyalgia needs to be on disability. I am because it interferes with my ability to hold down a job.
I hope this helps others to understand better the person or people in their lives who suffers from Epilepsy.