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Posted by Susan K. on July 31, 2000 at 04:51:28:In Reply to: Re: Great Dexidrine day posted by Peg2 on July 28, 2000 at 05:41:21:
I went through at least 5 or 6 different medicines about 6 years ago when I was first diagonised with narcolepsy. After a crazy trial and error period I was finally put on dexidrine in the amount of 15 mg. 3 times a day for a total of 45 mgs. a day. My doctor allowed me to adjust the medicine as I felt my body needed. On some days I only took 15 mg. a day on others I might have to take all 45 mgs. it just depended on my sleep pattern the night before. I was very lucky in that for about 75% of the time for that 5 year period I could function just like anyone else. Then around December of 99 things started changing. To make a long story short my doctor switched me to provigil which turned out to be a nightmare for me. Functioning was almost non existing. After a time we went back to the dexidrine and now for it to work I must take no less than 30 mgs a day and some days more but I am slowly getting back on track. My doctor had me take another sleep test a few weeks ago, both the night time test and the day time nap tests, while taking the dex like I normally due. Unfortunately she call about one week ago and informed me that I failed the test. To use her words I had what they call narcolepcy breakthroughs, which means that during the day time naps I still fell into rem sleep within a five minute range for a thirty minute nap out of 5 naps I fell asleep for all 5 and 3 of them went right into rem. She is a narcolepsy specialist who then informs me that I am beyond her scope of knowledge and she is trying to go through my two different insurance to get approval to send be to Baylor College in Houston where they may be able to help me as she says the only thing that she knows to do for me is to continually increase my meds as this disease progresses and she feels that I am already on a very high dose.
Sorry this message is so long sometimes it is hard to condense your story so that everyone will understand where you are comming from. As to your original question for the first 5 years after being diagnosed with narcolepsy Dexidrine allowed me to function like a normal person, hold down a very full time job and allowed me to finish raising three very beautiful and productive daughters. I still have a full time job just not the same one working 65 to 70 hours a week now I only work roughly 40 hours and my girls are now grown and in college with families of their own, except the youngest who is not married she is only 18. I have a good life despite the narcolepsy and even though they don't know what they are going to do with me there are 1000's of diseases that would not allow me to function even some of the time so I am very thankful for what assistance I can get.
So sorry this turned out to be a novel.
Susan K.
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