Do you wake at night and stay up for hours? ANYTHING HELP?

Discussion in 'Fibromyalgia Main Forum' started by fivesue, Sep 10, 2005.

  1. fivesue

    fivesue New Member

    Just a question since last night was the pits. So tired of not sleeping, going downstairs to recliner, being awake, falling asleep again and waking up feeling almost worse.

    What do you do during those early morning hours to occupy yourselves? Anything that helps you go back to sleep without waking the whole family? I generally play electronic solitaire and watch TV. Sometimes I drink coffee if it's past 4...know I have to be up early so no reason to think of going to sleep again. If earlier, I don't.

    Do you get headaches? Feel depressed? Feel fat and inept? Joints hurt? No energy? Does it come back during the day or do you just hang in there? Do you sleep during the day?

    How on earth do you that hold jobs exist? My hat is off to you...you are awesome people. What are your secrets/

    Since this seems to be such a common problem, I thought that if we all shared something, maybe we could get some help. This morning about 5 I took 3 ativan and slept for 4 hours. It helped, but I'm still feeling really groggy, depressed and angry. No one else in my family has any of these conditions...I got the short end of the deal in the gene pool. My parents both sleep 9 hours a night without any problem. My brother and sister also. My cousins have a bit of a problem...my oldest cousin particularly, but I think he's used to it. He sleeps when he wants...no wife, lives alone, independently wealthy. If he weren't in this family, I would be sure I was adopted except I look and act just my dad and my cousins. AND mys sister. Look like her, but she is the most laid back person I know except for Jim's sister. Both the babies of the family!

    Long...sorry, but even if you don't read the last, maybe you can list what helps.

    Thanks,
    Sue
  2. Empower

    Empower New Member

    I sympathize with you

    Do you know WHY you are not sleeping? It is pain, or is it anxiety?

    For me, it is anxiety and Klonopin helps me on nights that my brain is racing.

    When I wake at 4 or so, sometimes I take a little sliver of Klonopin and sleep for another 4 hours or slow

    OR, I take an Extra Strength Tylenol (not TYLENOL pm)

    I get ALOT of headaches, in fact had a migraine the other day that had me in bed most of the day (between running to the bathroom)

    I was recently prescribed Trazadone and I think it will help me with my sleep

    ALSO, I just posted that STRESS B vitamins has really helped me with sleep - I am not sure why - I think they have helped me relax a little.

    Good Luck - PS - I used to take Ativan, but it was WAY too strong for me - I was very unstable the next day

    Klonopin goes into your system much slower, but also tends to leave slowly, so the next day I am usually groggy until 12:00 (feel hungover)
  3. fivesue

    fivesue New Member

    I take both Ativan and Klonipen...have an anxiety disorder. So, I also have a metabolism that chews up and spits out medication in record time. It is a real drag...

    I'm glad you have found what works for you...and no, I don't know why I don't sleep...think it's more hormonal or stress than pain, but who really knows?

    Thanks for the advice.

    Sue
  4. JulieO

    JulieO New Member

    Klonopin seems to be the only thing that helps...
  5. elsa

    elsa New Member



    I have trouble falling asleep , and then trouble staying asleep. Like you, it is not uncommon for me to sleep about 4 hours tops ... eyes pop open or the slightest
    noise occurs and that's it for me.

    I use a sleep mask and ear plugs ... husband snores, God love 'im. I also have a memory foam pillow and a body pillow. If pain is waking you, have you tried any mattress toppers? We use a memory foam as it takes away my pressure point pain, but doesn't jepordize my husband's back problems.

    I take 2mgs lunesta at bedtime. I fall asleep gently and if I wake up I can go right back to sleep. I have to "devote" 8 to 9 hours to the sleep cycle though, or I run the risk of being groggy the next day.

    I hope this helps you some. I understood exactly what you were saying. Nothing more frustrating then waking up all bright eyed after a handful of hours sleep knowing it's going to be an awful day because of it.

    Take care,

    Elsa
  6. kbak

    kbak Member

    I take a litney of things to sleep. I take 2 benedryl to get me to sleep, then I take one neurontin 300mg, and then I take L-Theanine calm plex, which you can buy here. L-Theanine is a unique amino acid found almost exclusively in the tea plant. L-Theanine crosses the blood brain barrier, and increases dopamine and GABA levels in the brain. Calm plex includes GABA, which helps to calm an over active brain.

    I am slowly cutting back on my neurontin, even tho I only take 300mg. at nite. I want to see if I can sleep eventually without it. But, I will always take the other things for sleep.
  7. nanswajo

    nanswajo New Member

    Hi Sue:

    I SO hate not being able to sleep. It has been the worst lately. I don't know why. I am having lots of nightmares and I think it has been since I started taking Zanaflex. They are so terrible they wake me up, but sometimes it is pain and sometimes I have no idea what it is.

    I, like you, will feel wide awake as if something in my system is out of whack. I do have restless legs and sleep apnea and if I do not take Mirapex early enough in the evening for the restless legs it will bother me all night. If I then take Klonopin it helps me with that and also the nightmares. Klonopin, as others have mentioned, is my last ditch go-to med for sleeping.

    You might want to get a sleep study to find out more about why you don't sleep. I want to check further into that horrible wide awake feeling when you know you should be sleeping, myself. Although I have had many sleep studies, I have never really had to deal with this problem before.

    As to what I do with the time--I read, which can make me sleepy, or I get on the computer (which they say is not good because of the bright light.)

    I do work and am amazed at how awake I can feel. Maybe it is one of the meds I am taking. But, I have all the symptoms you mention and more: the pain all over, the weight gain, depression, headaches and also memory problems. So far my bosses have been understanding, but there may come a day....

    It is a horrible thing to deal with and I am sorry you are having so much trouble. Wish I had a magic wand to wave for all of us.

    Nancy
  8. matthewson

    matthewson New Member

    I take ZMA which I order from this site. It has worked really well for me. I also take flexeril with it if I have to work in the morning so I can be sure and get a good nights sleep. Flexeril is one of 3 or 4 meds that will get you stage 4 sleep.

    The flexeril works better for me if I don't take it everyday. If I do, it doesn't work as well after a few days. Have to leave a few off in between.

    Hope you get some good sleep soon!

    Sally
  9. WoodstocksMusic

    WoodstocksMusic New Member

    will put me out like a light!

    Seriously however, after 6 years of this horrible sleep pattern I finally found that lunesta 3mg and flexiril help me to fall asleep gradually and then if I get up (for a bathroom run) I can lay down and fall right back asleep.

    I too only use the flexiril after a couple nights of troubled sleep and occasionally I skip the lunesta as well if I don't have to function the following day. If I can get a couple good nights sleep without out any help I just feel better but after struggling a couple nights I take both and rest very well.

    The lunesta has been better for me then ambien. Ambien knocked me out quickly (and I do mean quickly) but 3 to 4 hours later I was up and wide awake. The lunesta seems to take about an hour and a half or 2 hours to really kick in good but it keeps me asleep for 7 to 9 hours.

    So with what your telling us it would seem that you can fall asleep you just can't stay asleep through the entire night... be sure to tell your doctor this because there is definately a difference in not being able to fall asleep and wakings during the night....or combinations of the two like I experienced.

    Good luck as you search for something or a combination that will work for you.

  10. tansy

    tansy New Member

    and that is zopiclone (lunesta) but I have to take the max dose. I was originally Dx with ME/CFS in the ealry 80s, this meant seemingly sleeping a lot but it was never restorative sleep, then as has often been observed ended of with profound insomnia; this affected going to sleep and staying asleep. I ended up with just short term dozing throughout the day and night; this made all my other health issues I had much worse including the brain fog.

    Now I get better sleep and it makes a marked difference.

    The great thing about lunesta, if it works, is that toelrance should not become a problem. Even beter no feeling drugged during the day.

    Tansy
  11. mbofov

    mbofov Active Member

    I had terrible middle of the night insomnia, waking up for hours. Two years ago I had a saliva test done to measure my cortisol levels and they were all out of whack, too high in the middle of the night, and the lab said that is a definite cause of insomnia.

    I started taking Seriphos (phosphorylated serine) to lower the cortisol and it helped enormously with middle of the night insomnia. I found it worked best when I took it first thing in the morning on an empty stomach, and late morning on empty stomach (divided doses). It didn't work at all when I took it at night, something to do with the body's natural cycle.

    I started with 8 capsules 2 years ago and now am down to 2. I sometimes still get early morning insomnia - 4:00 or 5:00 a.m., but nothing like it was before.

    I also take melatonin, l-theanine, as someone else suggested (this is a great product), sometime benadryl. But I don't think any of this would really have worked without the Seriphos.

    I have no bad side effects taking it in the morning. The only thing I noticed was I was calmer, less jittery, not bad.

    Mary
  12. pepper

    pepper New Member

    I have had the same problem as Sue for many years. I suspect that out-of-whack cortisol levels have something to do with it and would like to have this checked out.

    What kind of doctor did this test for you?

    Were you tested a number of times, including during the night to determine when your levels were high and low?

    Thank you.
    Pepper
  13. rockyjs

    rockyjs Member

    I turn on the light as soon as I know I'm not going to fall back to sleep and drape the shade with a towel to give just enough light for reading.

    Then I turn on the radio to a talk radio station and move the volume down so low that I can't really understand the words...it just sounds like people in another room having a conversation. I used to love to fall asleep like that when I was little and we were visiting friends or family.

    The last thing I do is grab a good book and start reading. It may only take 10 minute or it may be several hours, but at least I'm not lying there tossing and turning and dwelling on the insomnia.

    Usually I fall asleep with the light on and the radio going and never wake up until morning.

    Jan
  14. fivesue

    fivesue New Member

    I'm so sorry you all have problems sleeping, also. Isn't it the pits?!

    There are some great ideas here. I think I'll wait until morning and then I will print this thread out and figure out a game plan.

    I have ambien, but if I take it too often, it doesn't work. I'm thinking of taking a second Klonipen at night to see if that helps...I usually take 1 in the AM. Also, I will check on Lunesta the next doc visit I have. Plus, I'm going to check out the supplements others suggested. I was taking Melatonin and I stopped it one time for no reason...just stopped and I haven't thought about it forever...might try some of that.

    I feel like a witch doctor mixing my potients (sp?)...Funny. Has to be funny at times or it could just be too sad to bear.

    You take care and have a great night sleep. Thank you again for all your great ideas.

    Hugs,
    Sue
  15. auntcon

    auntcon New Member

    the dh will say take whatever it is that makes you sleep and go to bed...

    That's just the problem... nothing works for more than 2-3 days
    Xanax -- a night of sleep... next nite.. nothing
    Zanaflex 1/4th tab helps to fall asleep but not for long
    (AND THANKS NANCY for noting... I have nightmares with it.
    Benadryl sleep 4 hrs

    But if I get 4 hrs I do feel better. Some nites I don't sleep AT ALL or the next day... and sometimes into the next nite...

    I do get to sleep during the day since the dh works midnites he does too so that's ok. But I want to sleep at night I don't feel rested when I get a nap during the day.

    I think white flour makes me fall asleep just as much as any med YUK

    Got a dr appt on MON new dr maybe he'll help me with this.
    I feel like a new person if I get more than 4 hrs!!

    Connie
  16. PVLady

    PVLady New Member

    This all sounds so familiar, especially going downstairs to the "recliner chair" in the middle of the night. At one point, I was moving to three places all night - the couch, recliner chair and back to the bed.

    I would wind up back in the bed. Towards morning I use the sleep mask and ear plugs. We also have the windows covered so it stays very dark even when the sun comes up.

    Thanks to this site, I knew to ask my doctor for Klonopin. I was taking 1/4 of a .5 mg tablet early in the evening, then 5 mg of Ambien right before bedtime.

    It helped tremendously. If I woke up, I was able to go right back to sleep. I think my problem was anxiety.

    I will say, when taking the Klonopin, (even a tiny dose), I was groggy the next day but I don't care. I would rather be groggy than awake all night.

    I was taking the Klonopin for a few weeks until last week, I had a episode of "palpitations" that scared me all the way to the emergency room.

    I read Klonopin can do that so I stopped it for now. I am doing ok with the Ambien only for now, but if the problem comes back I will take a small amount of Klonopin again and hope it does not affect my heart.




    [This Message was Edited on 09/10/2005]
  17. mbofov

    mbofov Active Member

    I've had the test done twice. Each time I had to collect saliva four times a day so they got a reading of what my levels were throughout the day, from early morning to sort of late.

    A naturopath did it last spring, through Great Smokey Labs (I think that's the name).

    Two years ago I had it done through Clymer Healing Research in Pennsylvania. I'm in California, so we did everything through the phone, e-mail and regular mail. You can find Clymer on the web. I get the Seriphos from Clymer, they had the best price - $22 for 100 capsules, plus mailing.

    The lab fee for the test was around $100, and then Clymer charged not too much for a phone consult with their doctor. and my naturopath charged her regular fee for a visit.

    The first test I had 2 years ago, my levels were all out of whack. The test I had last spring, they were much better, though I was still on the Seriphos, but down to 3 a day, from 8.

    I found an interesting article re high cortisol and stress and phosphorylated serine (Seriphos) which I'll post tomorrow under a separate thread. I really think from what I read here that many people here have cortisol levels.

    Mary
  18. sleepyinlalaland

    sleepyinlalaland New Member

    If you're like me you probably hate the question "WHY aren't you sleeping". I've been psycho-analyzed to death over it by family, friends and professionals. I don't believe there IS a psychological WHY. I think it's a neurological problem, but that's not an answer either.

    I have tried most sleep meds mentioned above and still wake up after 2 to 3 hours of sleep only to toss and turn miserably for the rest of night. This is my TINY suggestion to at least turn down the misery of "just laying there". Unlike some, I can no longer use my eyes to watch TV or read during these zombie hours, but I DO find the radio helpful. Sometimes I listen to music (PBS...no commercials), sometimes talk. The trick is I have it turned very low...just low enough to hear if I pay attention, or to tune out if not attentive. Sometimes the distraction enables me to get a little more sleep. If I don't sleep, I feel a little less depressed listening to something interesting. (It is getting harder to find good radio programming...might have to sign up for satellite)

    I hope something works for you. I am looking forward to trying some of the newer medications...Lunesta, and the one that targets the Circadian Rhythm (forget name, but very new). Or maybe Xyrem. Meanwhile I use small amount of klonopin and...the RADIO! My hat's off also to those that work with this condition. I finally could not anymore, and would just have to dig a hole and die if I did not win disability benefits (which I just did after 4 years).
  19. pepper

    pepper New Member

    I will look for your post. I know that there are several of us on this board who are investigating the cortisol thing. And there is not much help out there for us - unless we initiate it ourselves and know what we need. Until I saw your post, I really did not know what I needed to do.

    Thanks so much.
    Pepper
  20. fivesue

    fivesue New Member

    The cortisol thing is a brand new idea for me, but I think I may pursue it, also. And the radio...that sounds like a good thing to do in the early hours of no sleep...much more soothing than TV...no lights, soft something...might be worth a try.

    I did actually sleep fairly well last night for which I'm eternally grateful. I took a Soma aroung 8 and then an Ambien 10 around 10 and I slept. Woke up to go potty around 2:30 and was so afraid I wouldn't go back to sleep, but I did for 4 more hours.

    The aggrevating part is that I am so sleepy still today. We are going to grandson's football game in an hour of so, so maybe the nice fall air will help get me going.

    So, we whichdoctoresses (-: will keep on. The person who is going to the doctor tomorrow, will you please let us know what the doctor says about all this? Sorry I forgot your name...I'm just not able to concentrate, but at least I can remember some things. Hope you get some help and maybe some of us can talk to our doctors AND EVERYONE can share. I don't want to take Amitriptoline, Neurotin or Trazadone as they cause weight gain and I've already gained enough...from a size 4-6 to a 14 in 6 years. I'd just die if I gained more. It's so hard to look at my pictures now. I know it's part of the package, but being very consumed with weight, it is hard. Ah ha! Maybe this is something I should be learning from? HUMMMMM. At least my husband likes me still. (-:

    Sue
    [This Message was Edited on 09/11/2005]