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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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01-01-2007, 08:38 PM | #1 | |||
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The month of December has been really hard for me. Getting ready for Christmas, and in between, I had way too many medical appointments.
Just a couple of days before Christmas I had to have my narcolepsy study. It wasn't anything that I thought It would be. I thought, hey, it'll be like the regular sleep study, and all I'll have to do is show them how much i sleep during the day.......ummmmmm Wrong..... I went in on one evening, for a regular sleep study, and I'm sure most here know how that works, so nothing new, except my levels are turned up a bit, but the next morning, I'm awaken at 5:30am, and kepts awake for two hours, and then allowed to lay down, and sleep....I have 30minutes to do so..whether I sleep or not, it doesn't matter, they will wake you up, and no , and I do mean..Noooo closing of eyes to sneak rest. They keep me awake another two hours, time to lay down and sleep for 30 minutes. This is repeated all day. I could barely keep my eyes open during the up period. At one point I asked the tech. if I had fallen asleep, she goes, you tell me....I'm like, well, I'm not sure, it seems like every time I close my eyes to sleep, you walk back through the door to wake me up. She told me that I did indeed fall asleep, and that I am going into a deeper sleep. Ofcourse she wouldn't say more...which drives me crazy, so I won't find out if I'm a narcoleptic until this Thursday when I go in to see the Pulm. doctor. She did say that she would advise that my Provigil be upped. I'm already on 300mg a day, I was under the impression that that was the most it could be proscribed. She said either that, or have them add something. I'll let you know for sure, when I find out. So, I'm sitting her in my new flannel jamas, with a sore throat, stuffy nose, and feeling miserable... what else is new? How is everyone? Love Lizzie |
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01-03-2007, 12:58 AM | #2 | |||
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Sorry you've had such a rough month, Lizzie. I've never had any kind of a sleep study done. Sounds interesting, though I'm glad I don't have to go through it myself. I remember speaking once with a woman who had narcolepsy. For her, the trigger was laughing. Someone would tell a funny joke, she would laugh, and bam, down she'd go on the floor asleep! She had had to train herself not to laugh, and teach all of her friends not to say things that would make her laugh, unless they wanted to be scooping her up off of the floor! Hope yours isn't that extreme!
Hugs,
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Lois . |
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01-07-2007, 04:25 PM | #3 | |||
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Well, I'm a mess. On paper anyways. The doctors want to put me on Ritalin, it's a stimulant in adults, works the opposite in children, that's why they give it to hyper children. I'm a bit scared, I guess the Provigil isn't cutting the mustard so to speak with my sleepiness. The doctor said that it is very rare for a person to fall asleep with in 8 minutes during all naps...and even rarer to fall asleep with in 5 minutes during all naps. I was five minutes. So he said, you are really sleepy...ummmm duhhhhh... smiles..
Do any of you have more than one disease that causes you to fall asleep? I can't believe I have two, and dysautonomia can also make a person tired. It's almost too much to deal with to sort out. I'm beyond exhausted all the time. Vomiting is a bad trigger for me. Your poor friend, how is she doing now Lois? It's a horrible thing to live with love lizzie |
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01-07-2007, 04:53 PM | #4 | |||
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Lizzie, you poor thing! At least they are getting a handle on it, and aren't tellin you it's all in your head. The woman I told you about was just someone I met one time, so I don't know how she is doing. But I do remember her saying that she had coped with the disease for years, and had trained herself to avoid her triggers, and so could basically lead a normal life. In her case, it didn't make her sleepy all the time, just when it was triggered.
Keep us updated on how it goes for you. Hugs,
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Lois . |
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