Pred & Insomnia
 

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!!!

insomnia
 

first, it's great that you are doing so well on the prednisone.

and most likely you will do even better, once you have a good night sleep.


prednisone can cause insomnia, but those are things that can help (if you haven't done them yet)-

take the prednisone in the early hours of the morning. try even 6:00 AM.

try to have a relaxed evening and relaxed enviroment in your bed-room, with a sort of "fixed" schedule (like we do with our little kids, where they have a certain routine each night).

try to eat a light meal for dinner, with a sip of alcohol ( I am talking about a small sip or two, if it is not contraindicated for other reasons, no more).


and hopefully your dose will be gradually decreased and then it will get better.

alice

Pred can really turn up the energy... some people can get very hyper from it. I wouldn't use alcohol however, because of risk to the stomach.

I'd try upping the Melatonin to 3 mg at night. I know the studies show 1mg or less works, but really it doesn't for me. I use 3mg.

You should be getting your blood sugar checked also at those doses periodically since Pred can raise blood sugar.

Same Problem!
 

I'm having somewhat the same problem. I take 60 mg about 8:00 am and my problem is falling asleep. I have started taking Tylenol PM about 1 hour before I plan on going to bed and it seems to help. I notice the nights I forget to take it, I lie awake for about 2-3 hours.

Good luck - Hope you find something that works for you!

pred & insomnia
 

Alice,
Yes it is great to actually have some energy again and I have no doubt you are right about a good nights sleep making me feel even better.

I am doing most of the things you mentioned except for a couple of sips of alcohol. I will give that a try. Thanks so much.
Kendra

pred & insomnia
 

Mrs D,
I would say I am bordering on hyper. My house hasn't been this clean in months. I was in my kitchen the other day rearranging dishes and thinking it hasn't been that long ago that loading the dishwasher drained every bit of energy I had.
I will try upping the Melatonin a little. I have tried taking 3 mg and it seems to make me nervous and jittery but I could try 2 mg.

They do run labs on me reguarly. Thanks for the info.
Kendra

pred & insomnia
 

Juanitad,
It is sooo frustrating isn't it? I don't have any trouble falling asleep but I wake up after about 5 or 6 hours wide awake even though my body knows it hasn't had enough sleep. I am glad the Tylenol PM is working for you!!!
Thanks,
Kendra

Hi Kendra,
I too have insomnia problems. Pred has been re-increased from 5 to 30 mg/d and this time, like 2 years ago, I barely sleep at night.
I'm presently using homeopathy with good results, 2 tablets under the tongue, 1 hr after supper, are adequate for me.
As the product is french, I give you its composition:
Aconitum napellus
Belladona
Calendula
Chelidonium majus
Abrus precatorius
Viburnum opulus
All components at 6CH.
Maurice.

Pred & Insomnia
 

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

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

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.
Kendra

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.

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

patrck here ,Are you taking mestinon as well
 

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

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.
Thanks,
Kendra

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.
Kendra

8:00am,12:00,04:00pm,8:00pm
 

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

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.

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!!!:grouphug:
Kendra

Hooray!:D

I am glad you have found your sleep again.