Tuesday, August 12, 2008

Seizures again...

After almost a year of feeling "almost" seizure-free, I had a setback. About two months ago I started having issues with my seizures again. I thought I would describe some of them, because I think it's helpful sometimes for people to read what other people's seizures are like. This sometimes help validate your own seizures, auras, and feelings you also may go through when experiencing simple partial seizures. These types of seizures are always odd and just vary all over the board. So if you're sitting there having one, you may think that you are crazy or what you are feeling or seeing or hearing, and all of the sensations that sometimes accompany these seizures, is not "real". The fact is, it may not be that "visible" to those around you, but what is going on inside can be extremely disturbing. And many times, because these seizures are hard to explain, some people may think you are nuts!

About two months ago I was on a vacation with my husband and his family. We went to a reservoir here in Nebraska and stayed in cabins. Sleeping arrangements were different than the norm, because of the way the beds were laid out and how space permitted. My husband was sleeping in a different room, while I was with my two year old in a bed next door.

I went to bed early so that I could get my daughter to sleep. About 15 minutes after having laid down, I started feeling very "odd". I felt that feeling of doom that sometimes accompanies my seizures. I felt my heart racing and knew that I was probably at the start of an aura. An aura sometimes precedes a seizure and is considered part of a seizure or a seizure in itself. I have always had an aura before my seizure, or some type of warning signs that I was going to have a seizure. At first I thought it wasn't going to be a seizure, but instead I was having some kind of heart attack, as I felt like my heart was going to pound right through to the outside. I tried to calm down, thinking I may just be making it worse, possibly initiating a panick attack.

After about 15 minutes or so of just feeling awful, I started to tremor. Tremors vary during seizures. But for me, different parts and sometimes all limbs are involved, in a jerking medley of sorts. I am familiar with this and thought that perhaps after that happened I would feel better and it would be over. It was not totally uncommon for me to have a few tremors at night prior to falling asleep, if I was really tired. But those were very rare and basically the only type of seizure activity I had had in a long while.

The tremors continued and involved all parts of my body, from my legs, arms, head, and torso. They were not violent shakes, but they came constantly. This was unusual for me, to have them last more than a minute or two. Instead, I shook for 3 minutes or so, then felt like it was going to stop even though the feeling of doom still remained.

Eventually, I was able to get to my husband and he came and laid down with me. I shook for about 20 minutes and just felt miserable. When it was finally over I was eventually able to fall back to sleep. The next morning I felt like I had a hangover. I had a headache and felt completely in a different world. I was upset about what had happened and could not understand why "they" were back. What could have triggered these to occur after all this time.

The following days seemed to fly by. I had a few tremors the next night, but no feeling of doom. I was thankful that it seemed to pass.

Unfortunately, a couple of weeks later, I started having problems with seizures again, only this time they were in a different form. One day at work I had an awful feeling and had felt antsy with anticipation of some type of impending doom. At first I thought it was all in my mind... that there wasn't going to be a seizure and that I was just making it up myself. When I started feeling worse, I headed to the bathroom trying to decide if I was going to throw up or pass out. As I opened the bathroom door, I saw the stalls and they became blurry. I started to feel myself leaving reality. I looked down at my hands and they did not seem like they were a part of my body. I saw myself in the mirror, but did not think it was real. I felt like I was drugged, walking in a daze. I really thought that I would pass out, so I tried to make it to someone's office. I collapsed in the chair and told my co-worker that I was having a seizure.

Most of my co-workers have not seen my seizures. If I had small ones, I remained in my office and just worked through them. It has been rare for me to have issues with seizures here at work.

I threw my head into my hands and bent over in the chair thinking that if I passed out, I would already be part way to the floor. The feeling in my head was so intense. I felt a freezing cold sensation go up my spine and into my skull. I then felt a really hot sensation do the same. My head felt like it was going to burst. My brain felt tight, like it was trying to explode. The tightness was almost too much to bear. My eyes felt like they were being pushed out of their sockets. I put my hands over them so that they would not explode. I then had a strange feeling, as if my brain was bleeding or leaking. It was very disturbing. I thought to myself... Am I dying?

After all of this, I had a quick few tremors/jerks in my arms, and then it was over. From my aura until the end, the whole "event" as my neurologist calls them, lasted about 30 minutes.

A new pattern was established. I continued to have similar seizures the weeks following. They were not constant. I would have one one day and it would be somewhat mild and then I would have one another day that felt devastating to me. My neurologist has increased my dose of medication. So far, one week into it, I am doing much better. I am still having small "events", but they are minor and I do not feel as worried as I was before. They last for a very short time and are always accompanied by an aura.

For those of you who have simple partial seizures, you will understand what you have just read. I can write a book on the different types of simple partial seizures I have had over the past 10 years. Some people may read it and think it is science fiction, but others would understand how devastating it can be to be reminded that you have epilepsy each time a seizure occurs. Read more!