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Trouble sleeping

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14 years 5 months ago #14125 by milly
Trouble sleeping was created by milly
After ten months on prednisone (no longer taking) at a pretty high dose for most of this time, I am having trouble sleeping. I think this is just a pattern that I need to break.
I was wondering if anyone knows of something I could take to help me sleep, I don't want to take sleeping tablets I thought there may be a natural remedy that would not effect platelets?

There is no practice run in life.
14 years 5 months ago #14157 by
Replied by on topic Re: Trouble sleeping
Hi Milly,

Since Prednisone is responsible for your sleeplessness, there's a simple way that you can use it to lessen the side effects. Please see my earlier posts on how you can do it.

How to Attenuate Side Effects to Medications
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14 years 5 months ago #14195 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Trouble sleeping
Hi Milly,

I, too, always have trouble sleeping. I've always had some trouble sleeping, but after taking Prednisone and Decadron (high does, too), my sleeping habits are a lot worse. I take klonopin at night just to relax me; otherwise, I would be awake all night. Sleeping pills do the opposite on me--they keep me awake! I've always been a little strange when it comes to medication.
The following user(s) said Thank You: benny
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14 years 5 months ago #14198 by eklein
Replied by eklein on topic Re: Trouble sleeping
I posted this in the wrong thread first - sorry -

Two things that help me when I wake up in the middle of the night - overlapping with some of April's tips:
1) DO NOT look at the time. That brings my mind to full alert and then I start calculating, waking up more of my brain (that's what it feels like anyway).
2) I do have some sleep medications but I tell myself - I'll give it an hour and try to fall back asleep and if I don't in an hour I can take something then. (Yes, this sort of contradicts the first suggestion.) Anyway, if I give myself an hour, then lay down and think about the ocean or something not too stressful, I can often fall back asleep well before the hour is up. And it helps calm me to know that if I don't fall asleep in an hour I can take something.

Not sure how old you are, but I have found that 40s and older was the end to a full restful night of sleep. I can sometimes sleep enough in two chunks but never straight through.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 5 months ago #14200 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Trouble sleeping
Erica,

You hit right on the spot! After 40's you don't seem to get a good night of sleep. And, I, too, always wake up during the night. I try to relax and go back to sleep. Usually this will work. I use to take Sinequan for sleep and to relax me, but after years of taking it--I became allergic to it. It is also on the list of medication that makes your platelets fall (in the same category as Benedryl).
DeeDee
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14 years 5 months ago #14209 by eklein
Replied by eklein on topic Re: Trouble sleeping
Something else that helps me get to sleep - and I know Sandi totally disagrees with this strategy! Anyway - I read that your body temperature drops before you go to sleep (that's one reason why a hot shower right at bedtime might not be a good idea) - and I had noticed that I got really cold when I got sleepy. So I find that cooling off a bit - like not being under covers - helps me feel sleepier, and then I get under the covers and am more able to relax and sleep. So when you wake up at night, try throwing off the covers and cooling off a little - and it might be easier to get back to sleep. Hey, it's free and safe to try!
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 5 months ago #14211 by milly
Replied by milly on topic Re: Trouble sleeping
Thanks everyone I am going to give all these things ago. Erica I am over 40 actually 50 in a few days so menopausal as well. Don't think this is helping the situation either.

There is no practice run in life.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14223 by Sandi
Replied by Sandi on topic Re: Trouble sleeping
I disagree?
14 years 5 months ago #14227 by
Replied by on topic Re: Trouble sleeping
I kind of disagree too?

Except I do believe us females after a certain age do have more trouble getting to sleep and staying asleep - lack of hormones or none at all [and that's why I will never ever believe God is a woman!!].

Personally I think all the "hints" to sleep better are useless - just like all the "hints" to stop smoking are useless. But that is me. Give me a drug to get to sleep :) And as far as stopping smoking - I did it the hard way, had bronchitis and couldn't inhale so figured may as well quit [painless actually when compared to sucking a toothpick or eating an orange to curb the desire to smoke, I didn't have withdrawal because I was too darn sick].

I have given up on sleep, I know I will never have a good night sleep again except once in a blue moon, that's it - sometimes I even forget what that words means.
14 years 5 months ago #14229 by
Replied by on topic Re: Trouble sleeping
Whoa, Melinda! Seriously...your attitude of just 'give me a drug to sleep' could very well be contributing to your inability to sleep. All drugs have chemical effects, and many have been clearly shown to have sleeplessness as a common side effect. Yes, it may be easier to just take a pill than to have to put some effort and intention to trying other things (though I think most of the above hints are fairly easy to implement, and many are actually enjoyable.), but, do you really feel that is the best answer?

Sleep is a natural function of our bodies. I disagree that it is "normal" to not be able to sleep anymore, just because we've gotten older or just because we're menopausal women. Common, yes--but not normal. The inability to sleep or to stay asleep is showing that something is wrong, something is imbalanced, and it's one 'symptom' that should be paid attention to and investigated--not just artificially induced by yet another drug, and not just accepted that this is your lot in life.

Here is a link to an article by Dr. Joseph Mercola on 33 tips to a good night's sleep:
articles.mercola.com/sites/articles/archive/2010/10/02/secrets-to-a-good-night-sleep.aspx
In it, he describes some of the reasoning behind the suggestions. (Erica, he even confirms your experience about needing to be cooler to fall asleep!). I think that knowing WHY something works, sometimes makes you more likely to try it.

But, if your sleeping problems began with taking a certain drug, the simplest and easiest way to reverse it is through tautopathy. There are lots of other things that can cause sleeplessness, too, like loss of blood (homeopathic China or Phosphorus are good for this) or even loss of sleep itself, as when pulling an all-nighter or caring for a sick child. You cannot function optimally without good sleep. Investigating and then addressing the cause of your inability to sleep would be far more fruitful than just adding another drug to the mix.

April
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14 years 5 months ago #14231 by milly
Replied by milly on topic Re: Trouble sleeping
Melinda and Sandy, do you disagree with the hints or the menopausal thing. Sorry I just got a little lost.
Melinda, it is the staying asleep bit that I have trouble with. I have no trouble going to sleep, just wake up (wide awake)after about 3 hours. It really would not worry me if I didn't feel so tired during the day. I can usually go back to sleep after about 1 hour for another 3 hours, I used to sleep so well. I am like you Melinda God certainly is not a women, but he did have a good sense of humour!

There is no practice run in life.
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14 years 5 months ago #14233 by eklein
Replied by eklein on topic Re: Trouble sleeping
Re disagreeing - I meant, I mentioned the cooling off at bedtime thing once before and Sandi disagreed - she didn't find being chilly to be at all sleep-inducing. It wasn't an argument or anything, just a different opinion about coldness and sleepiness.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
14 years 5 months ago - 14 years 5 months ago #14237 by
Replied by on topic Re: Trouble sleeping
Well April - you did it again, you gave us a link to something the honorable Dr. Joseph Mercola writes but one can't read it unless one subscribes to his site which I will not do [why can't anyone go there to read what he has to say, why must one subscribe to his site].

"...put some effort and intention to trying other things..."
And you do not know what I have done in the past to try to get a decent night's sleep - so lets not be so condescending or quick to judge!
14 years 5 months ago #14238 by
Replied by on topic Re: Trouble sleeping
What Erica said :)
I like a cool room but not chilly.

Milly that must be quite miserable to be able to fall asleep but then awake but then be wide awake a few hours later for a number of hours before being able to fall asleep again.

Yes he did have a good sense of humor!
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14 years 5 months ago #14239 by eklein
Replied by eklein on topic Re: Trouble sleeping
A few years back I was having more problems than usual with sleeping so I started looking online at some insomnia discussion boards. I really scared myself, oh my goodness, some people have this problem so bad that my 4-6 hours of sleep when I needed 8 seemed like nothing in comparison. I actually had to stop reading, I was afraid I would get so anxious about sleep that sleep would be impossible.

I have the same pattern as Milly, I wake up after a few hours of sleep. This is new since I've been in the menopause age range. I sometimes have problems falling asleep too, I've had that one for most of my life.

I take a very low dose of ambien, half of the smallest one (that comes to 2.5 mg dose) which lets me fall asleep. It wears off in 2-3 hours and I have no hangover at all from it. So if I wake up before 4am and feel awake but didn't get near enough sleep, I can take another 2.5 mg dose and be fine at 6 or 7am. I only use it on work nights.

I've tried most of the herbs for sleep including valerian and hops, chamomile of course. That was years ago. Most of them have contra-indications for lupus/auto-immune disease. Anyway, I didn't find them to be reliable or pleasant.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 5 months ago #14240 by eklein
Replied by eklein on topic Re: Trouble sleeping
Forgot to say - my case manager nurse at the time recommended the strategy with half an ambien if I wake up at night.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14241 by Sandi
Replied by Sandi on topic Re: Trouble sleeping
I probably disagreed because of my temperature problem. Always feeling cold and chilled to the bone, heat is the only thing that enabled me to get to sleep. My electric blanket is my best friend. I'm a different creature than most. Heat is the only thing that helps the muscle pain - I would stay in a warm bed all winter long if I could.

I've gone through a lot of different sleeping problems over the years. Usually, my problem is falling asleep, not staying asleep. The RLS problem I had a few years ago was the worst; I'd flip and flop until 3 or 4 am every night. Once I solved that problem, I was okay again for the most part.

My main problem now is not being able to sleep on Sunday nights because I dread Monday's so much. I also wake up these days with night sweats a lot, but can fall right back asleep. Sometimes my mind races a lot and I can't fall asleep, but I don't consider it a huge problem if it takes an hour or two.
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14 years 5 months ago #14243 by DeeDee Marie
Replied by DeeDee Marie on topic Re: Trouble sleeping
I had a severe sleep problem when I was in my thirtys through fortys (and beyond). I tried everything from hipnosis, counciling--reading every book on the subject. I hardly slept for five years because I didn't want to take any medication (and, I continued to work). My sleep problems started with my son's asthma attacks. He would wake up with an attack just as I went to sleep at night. After a while, I started getting panic attacks and anxiety because I thought my son might die from the asthma (his cousin almost died at that time). So, I finally started taking Sinequan and later Klonopin for sleep (never abused any medication--just took it as prescribed). Sometimes you do need to take medication; mainly, I would say that my sleep problems got worse because I wouldn't take anything to help out in the form of medication.

By the time I did start taking medication, I was looking really bad from lack of sleep. So I would say that anxiety does play a big part in sleep problems. The doctor would tell me that the more you worry about it, the less likely you are to go to sleep.
  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 5 months ago #14245 by Angel85
Replied by Angel85 on topic Re: Trouble sleeping
I got another idea, exercise lol. I did a bootcamp training session yesterday and i slept really well last night, didn't wake up till about 5:30am. I also resisted looking at the clock when i did wake up once and i got back to sleep straight away
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14 years 5 months ago #14248 by milly
Replied by milly on topic Re: Trouble sleeping
Seems to me most have problems with sleep one way or another, The boot camp idea Angel just seems a bit extreme to me (I think it would most likely give a very very long sleep one I probably wouldn't wake from)but good for you for doing it you must be fit.
Erica, what is ambien, is it a prescribed med?
Thanks to all for your thoughts, I have cooled the room, taken the clocks, made it as dark as possible I will now see if I am still a creature of the night after I have my warm milk.
Thanks Milly

There is no practice run in life.
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14 years 5 months ago #14251 by alisonp
Replied by alisonp on topic Re: Trouble sleeping
Trying to read Tolstoy always does it for me - I've had that book on my bedside for the last five years and I'm not past the middle yet!
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14 years 5 months ago #14259 by milly
Replied by milly on topic Re: Trouble sleeping
Hi Ali, mmm a boring book, I will put that one on the lists of things to try.
Thanks,
Milly.

There is no practice run in life.
  • Sandi
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14 years 5 months ago #14261 by Sandi
Replied by Sandi on topic Re: Trouble sleeping
This works for me - I fall asleep to the sound of thunderstorms or the ocean that I have loaded on my iPod. I use the ear plugs and am usually out in 15 minutes.
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14 years 5 months ago #14263 by eklein
Replied by eklein on topic Re: Trouble sleeping
Ambien is prescription, generic is zolipedem (spelling?)

Hah boring book - my partner was trying to read the recent John Adams biography for two months - it became our synonym for napping - are you going to read John Adams? He was out in two minutes.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
  • Angel85
  • Offline
  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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14 years 5 months ago #14286 by Angel85
Replied by Angel85 on topic Re: Trouble sleeping
lol Milly, i'm not particularly fit at the moment, but that's the idea really, to get fit and in shape for my sister's wedding in october.

I have found after trying some of everyone's suggestions, i have had really peaceful sleeps the last two nights. I also i'm a creature for comfort. I tend to have the fan on of a night even in winter, dunno why, but i like the gentle hum of the fan and the coolness of the air and my fan stopped working a few days ago and i borrorwed my mum's the last two nights and i have found that has made a difference as well.
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14 years 5 months ago #14290 by milly
Replied by milly on topic Re: Trouble sleeping
Yeah Angel I always have a fan going, even if it's not blowing on me I find the noise helpful and I am still trying all the suggestions hopefully one day I will sleep, I just have this feeling that there is something else going on with all this, I don't feel right just can't seem to work out what it is.
Thanks for your help once again!

There is no practice run in life.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14295 by Sandi
Replied by Sandi on topic Re: Trouble sleeping
Oh a fan would kill my sinuses! I'm like Felix Unger.
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14 years 3 months ago #16362 by sem40
Replied by sem40 on topic Re: Trouble sleeping
I recently started taking 5-HTP. I believe I read that it is an amino acid and precursor to the chemical synthesis of serotonin and melatonin from tryptophan. Tryptophan is the stuff that's supposedly in turkeys that makes everyone sleepy after thanksgiving, the 5-htp helps you produce that. I also take vitamin D and a liquid calcium magnesium supplement from the company LifeTime as well as a b complex vitamin. I take these all before bed and so far I haven't been waking up at 4 am every night like I used to.

I am not taking any other prescription medications so I'm not worried about any interactions.
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14 years 3 months ago #16364 by sem40
Replied by sem40 on topic Re: Trouble sleeping
I also have a guided meditation cd from my favorite Buddhist practitioner Pema Chodron. It's called Pure Meditation. The very first meditation is supposed to be some kind of body awareness practice. I think technically you're supposed to be sitting up in a meditation posture but I listen in bed and I've never made it past the first five minutes of the disk! I have no idea why but it puts me right out. Good stuff.
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14 years 3 months ago - 14 years 3 months ago #16386 by Tad Moody
Replied by Tad Moody on topic Re: Trouble sleeping
Tricks that work personally for me:

1: If I can't fall asleep or feel restless, I stare at the clock, in a completely darkened room, and try to keep my eyes OPEN without blinking, all the while counting off the seconds in my head to try and guess when the minute will change. (Sort of like counting sheep, but counting time)

This helps get those crazy racing and worrying thoughts out of my head, and eventually, my eyes get tired, and will want to close.

2: No coffee or food or water a few hours before bedtime, so as to not needing to get up to go the bathroom.

3: No alcohol that day if I really need to get to sleep that night. (If I have the willpower!)

4: Go to bed when your tired, (If possible, and at a reasonable hour)

5: No arguing, honey-do lists, or "talks" before bedtime!!

If all this fails, I will just give up and stay awake all night, catching up on DVR's, books, practicing guitar, or just doing nothing. If I can stay awake during the following day, this kind of "re-boots" my sleep cycle, and I am OUT for the next night.