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success stories wanted
Fri, 07/27/2007 - 02:39I was and am very pleased to find this site and subsequently a group of people who understand what I'm going through. I'm 39 and was diagnosed in December. I spent three weeks in the hospital and four days on a respirator... I had uncontrolled tonic clonic and complex seizures. I have lost two years of my past (memory issues) and well,.... etc...etc.... Listen, I need to hear some good news. Most everything I read seems pretty grim. Please no Paul-y-Anna, "Happy to be alive", "enjoy each day" stuff... I know all this. I just want some honest refreshing good news. If anyone has some please share. Or at least something in the middle of... Mr. Grim and Ms. Anna. You know, like Real. Thanks
Comments
Re: Re: Re: success stories wanted
Submitted by dave 44 on Wed, 2007-08-15 - 10:47
I was basically uncontroled from age 16 till age 48,..6 years ago. In that time I had about 80 grand mals. There were times I went a long period of time without seizures and times when it seemed I couldnt go a week without one. I was lucky to find that valium,5 milligrams in the morning works miracles . I also take it when I know I will be experiancing things that are triggers.
In fairness I must say I did have one grand-mal about a week ago . It happened because I was doing so well I wanted to see if I could not take my depacote. I couldnt. I did stop dilantin a long time ago and its heavan being off that.I took that for so many years and did not need it.
Re: success stories wanted
Submitted by tracy_ack on Wed, 2007-08-15 - 11:29
Well, I had a massive seiz after a car wreck a little more than two years ago, did the whole coma/venitilator bit. Started looking for drug that would work. Thought that we had one and 8 months later, I once again was in the hospital after a series of seizures. We finally found a combination of drugs and I havent had a seiz since. (almost 18 months). Do the meds suck? You betcha. Im tired all the time, and I have gained about 30 pounds. I get depressed a lot of times for no apparent reason, and I tend to get angry much quicker than I did before my journey into neurological uniqness began.
On the up side, I do drive myself around every day, even some on a motorcycle. I can do the job that I have been doing my entire adult life. And of course, Im happy to be alive and I try to enjoy each day.
If I could go back and make it not happen, I would do it in a minute. I am not able to change that. This is the hand that I have been dealt, and I will continue to play it out. It is a sucky thing, this whole epilepsy bit, and I stand in awe of the people that can have seiz day in and day out and still manage to maintain some sort of sanity. I do live in fear of the day that I have another seizure. It is coming, i figure, but I dont know when.
I dont know if that is what your were looking for or not. I certainly hope that you can find some encouragement either in this posting or on this site. I have. Please feel free to email me if you want to talk about it some more.
Re: Re: success stories wanted
Submitted by Utah on Wed, 2007-08-15 - 04:41
thank you monkey, thank you lwblanks.... I needed that. Long time for me to thang you guys... I haven't been on the site, found it depressing and often shallow or trivial. Right, I can't spell (like many) anymore. Things are getting better for me. I know my auras and am getting used to my seizures. I know I'm not going to die and my auras give me enough time to lay down. I like your 10 second comment, so true. Thanks