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Old 12-12-2009, 11:25 AM #11
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Default Pred & Insomnia

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.
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Old 12-12-2009, 12:28 PM #12
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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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Old 12-12-2009, 02:02 PM #13
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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!

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Old 12-12-2009, 04:04 PM #14
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Default patrck here ,Are you taking mestinon as well

Quote:
Originally Posted by dog lover View Post
Hi everyone,
I have been taking 40 mg of Pred every other day for several weeks now and have had wonderful results from it. Most days I feel almost like my old self!!! I have been lucky so far and haven't had many side effects from it however I am having TERRIBLE insomnia. I have always slept a minimum of 8 1/2 to 9 hours per night and now I am lucky if I sleep 5 or 6. As good as I feel my body is exhausted. It is such a strange feeling because no matter how sleepy I am it is like my body just keeps going. At times I feel like the Energizer bunny. I don't have trouble going to sleep, my problem is being able to stay asleep. I am usually in bed around 10:00PM and wake up about 1:00 and then again somewhere between 3:00 and 6:00 and cannot go back to sleep no matter how long I lay there. Do any of you on Pred have this problem and is there anything you can take to help you sleep? I do take 1 mg of Melatonin about an hour before I go to bed but that just isn't working anymore. Like I said I feel so good and feel like if I could get a good nights sleep I would feel great. I see my Neuro on Tues. and plan to talk with him about it but wondered if others have found anything that works. I know MGer's can't take most sleeping meds or sedatives but need some advice here!!!
I had the same problem but got neuro to reduce the mestinon dosage to 30mg every four hours now that the pred has kicked in .
Don't have to take sleeping tablet any longer
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Old 12-12-2009, 08:19 PM #15
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Default pred & insomnia

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.
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Kendra
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Old 12-12-2009, 08:24 PM #16
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Default pred & insomnia

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.
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Old 12-13-2009, 02:36 AM #17
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Default 8:00am,12:00,04:00pm,8:00pm

Quote:
Originally Posted by dog lover View Post
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
Key to timing is if you are out after 8:00pm you need mestinon to function so amount may need extra dose if say you were out beyond 12:00am
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!
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Old 12-13-2009, 08:07 AM #18
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Quote:
Originally Posted by pmcpmc View Post
key to timing is if you are out after 8:00pm you need mestinon to function so amount may need extra dose if say you were out beyond 12:00am
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.
mestinon only lasts four hours so maybe like me your neuro may allow 30mg every fours hours
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Old 12-13-2009, 11:30 AM #19
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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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Old 12-15-2009, 01:40 PM #20
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Default pred & insomnia

I just wanted to give everyone an update. I LOVE you all for your suggestions and they seem to be working. I have not been taking any mestinon after 3:00PM and my Neuro told me to up my Melatonin to 3 mg a night. I slept a full 8 hours on Sat and 9 on Sun night. I can't believe how much difference a good nights sleep makes. Last night I slept pretty well but woke up at 5:30 this morning but still got 7 1/2 hours of sleep. DesertFlower, Patrick and Nicky thank you all so much!!!
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