Toe (choirgrrl) wrote in t_lobe_epilepsy,
Toe
choirgrrl
t_lobe_epilepsy

A Happy Introduction (I AM NOT ALONE!!)

Hello, everyone. I am 26, recently diagnosed as having Temporal Lobe Epilepsy just over the last year and 1/2. I am so excited to have found this community!!
My seizures began (at least from what I strongly remember) in '99, at a Penn and Teller show, of all things. I recall getting very sleepy during the show, and thought I would go to sleep. The next thing I knew my ex-husband was waking me up, asking me to put my glasses back on. (I had sprung up, he says, threw them off my face, and went limp.) We decided to leave immediately, and I had great difficulty walking, needing a human crutch, as well as speaking, for my tongue had gone numb. I thought it was due to the fact that I had not eaten all day, and didn't think too much more about it.
As the years passed, strange things began to happen. Out of the blue, I would be feeling fine, and suddenly have short spells where I was aware of my surroundings, but could not move or speak. They usually passed quickly, and I would feel fine once they were done, so I shrugged them off as vitamin deficiencies or hot flashes or whatever. I didn't even tell anyone until I noticed a pattern to their arrival.
Before I knew it, every month I was having one day of being, "sick," as I had labeled it. Then, as time passed, it became two days, then three... all usually centering around the time of my period. The spells were SERIOUSLY beginning to affect my work and social life (most thought I was on drugs) but the different doctors I had seen could not find anything wrong with me, or would simply raise their eyebrows at my explanations of how I was feeling. 

I will be feeling fine, and then  out of the blue, it will hit me. A flush of heat crawls up my body, and my muscles seize up. I am still aware of my surroundings, what people are saying, et cetera, but cannot move or speak. I feel very sick to my stomach, and feel as though I am STRUGGLING to keep consciousness. The seizures themselves only last about 1 or 2 minutes, but the after affects last up until another seizure hits- usually 2 or more within an hour for up to a week at a time. I do not move or socialize much, as all I want to do is sleep and forget how awful I feel. I have a terrible metallic taste in my mouth for the entire week duration, so I do not eat much, but I do drink water, even though it tastes like shit. I'd found that marijuana helped quite a bit, at least with allowing me to sleep, but have since quit. I urinate a lot, which is also one of the ways I knew/know the seizures were coming. The night before the "sickness" started, I would awaken almost every hour, almost ON THE HOUR, to urinate. The following morning, I would be completely fine until the first episode, and then laid up and ill for the week of seizure activity that followed.

It wasn't until I was literally laid up for a week at a time that I realized I could not just "live" with this "sickness" any longer. Something was seriously wrong, and I had to get it checked out. Again to the doctors, again with the eyebrows. Then, I had a grand mal seizure at work. One minute I was in the bathroom, leaning over the sink, cursing my messed-up brain, then next I awoke in an ambulance on a stretcher, en route to the local ER.
Long story short, and many many tests later, I got a diagnosis, and a prescription for Tegretol. I have been doing fairly well on it, although recently it seems that I have been having more TL seizures than I should. I am uncertain if it is my dosage (which I have been trying my damndest to get on a regular schedule) or if it is time to get on a new RX. 
I had surgery on my inner ear (I had a hole in some old scar tissue) thinking it would calm things down. It didn't. I got my tubes tied, and my uterus cauterized, thinking it would calm things down. It didn't. I recently had my last 2 wisdom teeth pulled, thinking- maybe- it would cut the seizures back. They seem to have gotten worse.
I am personally so sick of dealing with this that part of me does not even care any more. Half of me wants to work and be normal, and the other half is so sick of worrying about Dr. payments and money for RX's that I'm considering filing for social security and becoming a burden to the system.
I just don't know what else to do, and trying to get assistance of any kind is like pulling teeth.
Any suggestions? Any personal tales that might help? Anything HERBAL that anyone knows of? (doubt it)
Thanks again for having this forum here. I would have done a cartwheel had I known how once I saw it!
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