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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | |||
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Hi Maurice,
I am barely sleeping at night either and am miserable. I just don't know how people deal with this. I saw my neuro Tues and he upped my Pred to 60 mg every other day. I told him about my sleeping problems and he gave me some samples of Lunesta but even they aren't working. I am becoming desperate for sleep. I appreciate your info and will look the ingredients up to see if I can find something similar here in the US. Thanks, Kendra |
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#2 | |||
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hey kendra,
i have similar problems sleeping, but thus far i am still getting enough cuz i get to sleep in late....but i too lay in bed for hours...or i fall into a light half sleep...ask your dr about an herbal pill called kava kava, or kava root....its readily available at most health food stores...i used it when i was younger....i have no idea if it is ok for mg...but its really good... jess |
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#3 | |||
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Hi Jess,
Thanks for the info. I will call my Dr. Mon and see what he thinks about that. I am so sleepy today I can't hardly function but if I lay down I won't be able to sleep. It's enough to make you go insane!!! I am not a happy person without sleep. My poor husband and son are probably terrified to look at me at this point. Kendra |
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#4 | |||
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Kendra,
It is possible that your insomnia is from Mestinon. I don't have this problem now, but when I was taking a larger dose of Mestinon I was having trouble sleeping all night, similar to what you have described. The first day after lowering my dose I was so happy to be able to sleep properly again. Even now I have found that the timing of the Mestinon pills decides what time I will be able to go to sleep at night and what time I wake up in the morning. I try to start taking my pills as soon as possible in the morning. I am only taking Mestinon so I don't know about Pred (and the more I learn about Pred the more I know that it is definitely a last resort medication for me, I hope I never need to take it). Thank you for sharing your experience. We all benefit from sharing our MG related experiences.
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#5 | |||
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hi Kendra,
I was having some issues with insomnia before too, but I think that it was because I was taking my prednisone too late in the day. I always take it around 10am now and don't have any problems sleeping. This idea might seem overly simplistic, but do you drink alot of caffeinated drinks? Here's another one, I know that you were taking the patch before for quitting smoking. Are you taking it at night too? This can definately cause insomnia as well as nightmares. It interferes with REM and can cause you to wake up frequently throughout the night. Even if you're not taking the patch at night, taking it at all can interfere with sleep. I find that the side-effects of prednisone seem to be sorta universal, as in everyone gets them and they're sorta similar with everyone (that's prolly not completely true, but I find that it's one of those drugs that's pretty consistent). I have a feeling that something else is causing the insomnia or at least making the slight insomnia problems associated with prednisone worse. I think that as long as you're not on a dose over 60mgs, and you're taking it early in the morning, it shouldn't be causing such severe insomnia problems. I could be totally wrong though. I hope that you get some sleep soon! I've had insomnia problems in the past, and it sure does suck! nicky |
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#6 | |||
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Nicky,
I always take my Pred around 7:30-8:00 am. I do drink alot of caffiene. I am a coffee and tea drinker. I only drink coffee in the mornings but drink tea all day. Maybe I need to switch to decaffienated tea. I have not been using the patch recently so it's not from that. I am also going to try taking my last Mestinon around 3:00 PM since the pred is working so well. Thanks for the info. Maybe with these changes I can finally get a good nights sleep. Thanks to all of you for your insight. I sooo appreciate it. Kendra |
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#7 | |||
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DesertFlower,
I am wondering after reading what you and Patrick posted if it isn't the Mestinon. I only take 120mg daily. I take my first one around 10:30 AM and another around 5:00PM. How late in the day do you both take your last mestinon? Maybe I need to take it at like 9:00 and 3:00. It is certainly worth a shot. I will give anything a try. Thanks, Kendra |
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#8 | |||
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Quote:
He did not want me taking Mestinon at night otherwise but of course that is my case. You must talk with your own neuro. Do not self diagnose or self dose. Been there ,done that,big mistake These are powerful drugs not to be messed about with! His Words. |
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#9 | |||
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#10 | |||
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I have recently been taking 30 mg of Mestinon at approximately 8 am 12 pm and 4 pm - I can fall asleep at about 9:30 on this schedule.
Sometimes I get a late start on my first pill, and since I have to wait 4 hours between, my last dose has been as late as 5 or 6 pm - this is too late for me since this puts the time I am able to sleep at 10:30 or 11:30. And then I wake up late in the morning and it is hard to get my earlier schedule back. The odd thing is that when I take a 4th dose, in order to be able to function past 8 pm, then I don't sleep well all night. I am able to go to sleep at about 1 am, but I wake up early at about 5 am wide awake. I didn't realize the correlation between my sleep habits and the Mestinon until I started keeping records. I did find that if I take the pills at 6am, 10 am & 2 pm, I am more easily able to take a 4th dose occasionally at 6 pm and sleep relatively well. I prefer this schedule since I wake up with the sun but the sun is not shining at 6 am these days. Soon the winter solstice will be here and the days will get longer again. Hooray! My answer got longer than I intended...Here is the short answer: The absolute latest I like to take Mestinon is 6 pm, but for best sleep the last Mestinon should be about 3 pm for me. I hope your sleeping improves.
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