sleep study results not good - NO REM sleep

Discussion in 'Fibromyalgia Main Forum' started by justdifferent, Feb 17, 2010.

  1. justdifferent

    justdifferent New Member

    Hello everyone,

    I've been going through a hellish time and finally pinpointed it on my own to not getting any REM sleep. When allowed to sleep late or during the day, I would rebound REM sleep like crazy.

    I had a sleep study done which showed no sleep apnea or any other of the common causes for sleep disturbance. The neurologist's nurse was about to write it off as "improve sleep hygiene, weight control, etc" when I stopped and asked her if I'd had any deep sleep.

    She looked and said that there was a remark that the study was of "poor quality" - meaning I'd had NO deep sleep or REM sleep - and asked me if I remembered sleeping. I said through gritted teeth that actually, that was one of the better nights of sleep I'd gotten due to the controlled atmosphere, that yes, I went to sleep and woke up once with a little drool - but that yeah, that was pretty much what EVERY night was like.

    So she made an appointment for me to see the neurologist.

    I'm nearly certain that the Effexor I take is exaggerating the problem, but I've been on it for over ten years and haven't been this bad. So - is the lack of sleep causing the CFS or the other way round? I intend to switch off it gradually to Cymbalta, but that may cause my depression to rebound. I'm also considering going back to a tricyclic because I could SLEEP on it, and the SSRIs are notorious for disturbing REM sleep.

    Have any of you dealt specifically with the lack of REM sleep? I am a single parent and if I didn't have to get up at 6 am to get the kids to school, and could sleep until 9 am, I could handle work.

  2. Juloo

    Juloo Member

    And it disappeared. Short answer -- definitely see the neurologist. My two sleep studies showed "markedly disturbed sleep" which apparently disturbed only me...the doctor didn't even comment.

    When I finally addressed my lack of deep sleep (not lots of that), I was awake and focused all day, constant hunger went away, I ate less, and lost weight without trying.

    Very, very paraphrased, REM and deep sleep are not interchangeable -- deep sleep (stage 3/4) tends to heal the body and allow and hormones to balance, and REM allows the brain to balance and sort of 'download' the day to the hard drive, so to speak. Either out of balance, and we suffer.

    I am on and have been on Effexor for several years for PMDD. My sleep did not seem to get any worst because of it, but since it addressed PMDD problems, making those symptoms disappear, I felt better overall. However, I have heard that SSRIs and SNRIs can affect sleep.

    Get a copy of your sleep study results if you haven't already -- including the percentage of each sleep phase.

    Good luck -- come back and tell us how things are going!

    [This Message was Edited on 02/17/2010]
  3. justdifferent

    justdifferent New Member

    This may be part of the lost "huge" reply...

    I am definitely getting a copy of the study and a percentage spent in each phase.
  4. Juloo

    Juloo Member

    But the only thing that addressed the deep sleep was Xyrem, and it took a very long time to titrate. It was rather tempermental, but I'm glad I stuck it out. (You definitely don't want to wake up while this stuff is working -- many people go off it for this reason.)

    The other downside is that it is hugely expensive (it's one of those orphan drugs that only one company makes), although I understand that some insurances are starting to cover it under certain instances. That's the reason I'm not on it now, although I am doing better in other areas, so I can do a part-time day's work.

    Another downside -- if you are a single parent, this may not be the med for you even if you can get really puts you out. I mean O-U-T! It doesn't last all night like this, in fact, it is generally recommended to wake up during the night and take a second dose, but when you're in deep sleep, it can be nearly impossible for someone to wake you. So if you have young children, this could be a problem.

    Please be patient with yourself. I'm so glad the nurse is sending you to a neurologist.

    [This Message was Edited on 02/17/2010]
  5. AllWXRider

    AllWXRider New Member

    mentioned a study done using an fMRI to measure brain GABA levels. Most Rx drugs work on anxiety and sleep by increasing the sentivity of the brain GABA receptors.

    Synthetic GABA doesn't cross the Blood-Brain-Barrier (BBB), but pharmacetical grade does. Also, the amino acids: Taurine and Theanine seem to help it cross over.

    Fish is naturally high in GABA and a great source of Omega-3 fatty acids. Eat fish for a few days and see if your sleep improves....pls let us know :)

    A probiotic found in a Korean food called Kim-Chee makes GABA in the colon. A probiotic, if it worked, would be a permanent fix ! :))) I talked with a Korean friend of mine, Kim-Chee is a spoiled cabbage with a fish sauce, something like saurkraut. The "spoiling" makes the probiotic.

    In a study by Jacob Teitelbaum MD, Ribose also improved sleep.

    What else helps or doesn't work?
    Bright light therapy?
    Excess caffeine usage?
    High nighttime cortisol?

  6. justdifferent

    justdifferent New Member

    Unfortunately I don't like fish...

    What I know today is that of the 9 hours I was in the sleeping room (9 pm to 6 am) I only
    slept 4.5 hours. Of that time, 1% was spent in stage I sleep, 95% was spent in stage II sleep, and 4% was spent in delta sleep (the combination of stages 3 and 4). This is well off the norms
    for my age - something like 50% should have been REM, 30% delta, and so forth. I did not ever desaturate (drop my oxygen level), snore, or stop breathing. I did have periodic limb movement - significantly so.

    I am going to have another test that's done during the daytime as a series of naps to see if
    I transition through the phases of sleep. I imagine that I will, based again on my experience.

    The report contains many, many typos and some other things missing that I want to know,
    like when did my delta sleep occur? I'm guessing either right before I awoke at one point on my own or when the study concluded at 6 am, but this is of importance - and what time my lowest temperature was recorded.

    I actually ate half a chocolate bar midway through the test (it was in my purse, I was hungry, and they didn't tell me I couldn't) so that would've temporarily brought my glucose up.

    I'll see what the daytime test shows and take it from there.
  7. AllWXRider

    AllWXRider New Member

    If you don't eat fish "brain food" then I would recommend the pharma or natural grade of GABA. carries it.
    GABA, theanine and taurine

    chocolate has a low but significant amount of caffeine. The fact that you were hungry is an interesting clue. Low blood sugar will trigger cortisol (stress hormone) to release glucose from the liver. Cortisol wakes the brain up BIG TIME !

    Try some cashews for a before-bed snack. It should stabilize the blood sugar and is a great source of tryptophan. Blood sugar meters are real cheap now and a neighbor or friend might have one. Check your blood glucose at night B4 bedtime.

    What is your body temp?

    How is your circulation? Most CFS ppl suffer from hypercoagulation (poor blood flow). An easy test is on the big toenail. Press until it turns white (just a few oz of pressure) then let go, it should turn pink again <1 second. Enzymes like nattokinase, lumbrokinase or serropeptase should break down this excess fibrin. Limb movement gets the circulation going again.

    How does tryptophan or 5HTP affect you?
    Tryptophan -> 5HTP -> serotonin -> melatonin (the sleep hormone).
  8. Juloo

    Juloo Member

    Today (2/21/2010) Prohealth posted an article that the FDA is approving sodium oxybate (Xyrem) for fibromyalgia. Hallelujah -- hopefully it will allow people who do well on this med to be able to afford it.
  9. roge

    roge Member


    not so fast, FDA is currently reviewing Jazz's New Drug Application of (JZP-6)for FM. takes around 6-9 mths to get an answer, so around july-oct, 2010. Lets hope it is approved. I believe it will.

  10. roge

    roge Member

    both are important, but if had to choose to get only one, it would be SWS hands down.

    JZP-6 (Xyrem) is one of only a few drugs that is proven to increase SWS.
  11. Juloo

    Juloo Member

    ...that they were expecting an answer around mid-October.

    Still -- very nice that it would not be approved for only narcolepsy w/cataplexy!
  12. justdifferent

    justdifferent New Member

    I did the MSLT test (daytime) last week. I'm waiting for the combined results to see where to go from here.

    From my own perceptions of the MSLT, I highly doubt I'd be diagnosed with either narcolepsy or hypersomnolence. In fact, I may have scored fairly "normally" on the MSLT. Since I first posted, I have done some research and strongly believe that I have DSPS - delayed sleep phase syndrome. I also have periodic limb movement disorder, which I am guessing they will try to treat.

    I meet all the criteria for DSPS, including the fact that I have never been able to fall asleep before midnight unless I take medication for sleep. I've been this way since childhood. There are treatments for this, but all the indications are that it will be very, very difficult to adjust to a 6 am wakeup time and stick to that wakeup time since it is required for most, but not all, of the time (I share child custody).

    I do wonder if a drug like Xyrem or another drug would be effective in encouraging my body to SLEEP at 10 pm, say? It's hard enough to juggle job, single parenthood, CFS/ME without adding in not getting enough proper sleep.

    Facing this is yet another one of those times that makes me want to ... I dunno, scream? but I will get through this somehow.
  13. AllWXRider

    AllWXRider New Member

    Have you had your morning and evening cortisol levels checked?
    Us, ppl of CFS, tend to have low morning and high evening cortisol levels, just the opposite of normal. Yeah, it's $120, but maybe you can get the doc to write an Rx for it.

    I'm on 2.5mg of hydrocortisone and it really gives me a morning boost. I use Sleep Tonight at night to help me sleep. It has magnolia bark which has been found to break down cortisol.

    Still, blood sugar fluctuations could be causing the adrenals to kick in at the wrong time. Any blood glucose data?
  14. justdifferent

    justdifferent New Member

    but it might be worth checking again. Glucose (fasting) has always been okay.

    I spoke with the doctor today, and apparently my MSLT shows that I'm borderline hypersomnulent - or that I just fall asleep easily during the day.

    Therefore, he wants me to try ProVigil in the morning to see if I can stay awake all day (eg not take a nap at 6 pm) to see if that helps me be able to go to sleep earlier. I also need to try another drug for the restless legs. We'll see... I didn't get much help with methylphenidate? (a CNS stimulant) years ago when I took it for daytime sleepiness.

    My kids are now both older than 10, so grogginess on Xyrem wouldn't be a huge problem, but I hate to jump right to that . Or should I?
  15. Juloo

    Juloo Member

    I wouldn't just right to Xyrem. There's a chance your doctor wouldn't let you, anyway. I have tried Provigil, but it just sort of made me hyper-aware, with me still feeling body fatigue underneath. There are people, though, that swear by it. I've tried Requip, and I have a cousin who swears by it, but for some reason, me and it jut didn't get along. Even the itty bitty first dose had me throwing up at night.

    But that's one reason that sleep problems are so hard to solve. We are all so different.

    Please let us know how it's going!
  16. justdifferent

    justdifferent New Member

    ....I feel the same way as you, Juloo - that the Provigil keeps my brain awake but I still feel the fatigue beneath. It also makes me anxious, but nothing I can't deal with. I haven't started Mirapex yet because my insurance company is balking at it. I'm still trying to get some!

  17. phillybadboy

    phillybadboy New Member

    did the sleep doc tell you that lacked deep sleep? or did you figure it out your? if youu figured out on your on how? i have cfs and i think that i lack deep sleep.about to go get slep study. just would to know how to figur out what kind of deep sleep i'm gettin just in case the doc misses something or doesn't tell me.
  18. heapsreal

    heapsreal New Member

    Im a shift worker with cfs, i have had some bad sleep phase shifts in the past, what has helped me was melatonin, it didnt help me sleep a such but combined with a good sleep med, it got me out that cycle of wanting to go to bed at 5am and sleep till noon or 1pm. The 2 best sleep meds that i use are imovane/zopiclone it gives you a good 6-8 hours and occassionally for catch up sleep i use a low dose of seroquel, that stuff is a bomb, 10-12hrs sleep, but can give u abit of a hangover so i save it for days off so i dont have to be my normal 75%, lol. Juggling life kids and work aint easy and finding the right sleep meds is hard.

    good luck.