Results Of My Sleep Study

Discussion in 'Fibromyalgia Main Forum' started by Mikie, Aug 29, 2005.

  1. Mikie

    Mikie Moderator

    Of course, when I saw my PCP today, the sleep test results were nowhere to be found--par for the course. I called the sleep study center and asked them to fax the test to my doc. I also stopped by and picked up a copy. My PCP is to call me when he reviews the results. I haven't heard from him yet.

    Looking over the results, I can see that I had no Stage Four sleep at all and there was very little Stage Three. There were 26 arousals in six hours. It took 3 1/2 hours to reach REM. Obviously, I am getting no deep sleep.

    The sleep doc's summary was that "Sleep time and sleep efficiency are reduced but is consistent with testing environment. Sleep onset and REM onset are delayed. REM sleep time is reduced. Arousal index indicates a mild sleep fragmentation."

    My sleep efficiency was rated overall at 82.6. There was no sleep apnea.

    I do have some CD's and one does help me sleep better. It's supposed to increase Delta waves. Other than that, does anyone know how to increase the deep sleep levels?

    I just read an article which states that patients with FMS usually get no Stage Four sleep. No wonder we are all so tired.

    Love, Mikie
  2. elsa

    elsa New Member

    I have a bit of "fog" today, so I may not be as clear as I'd like to be.

    My results said that deep wave sleep ( level 4 )was down with some alpha intrusion. My REM onset was delayed and reduced ... he went on to list 0 REM sleep.

    Did your sleep doctor list no deep wave? Would that mean you were in levels 1 and 2 and then skipped right into level 5, which is REM, briefly?

    I have found out since my study that REM follows deep wave in the cycle and is most critical to how we feel. I had always heard of shallow, fractured and deep wave abnormalities in FM/CFS, but not much on REM abnormalities.
    Apparently it's not that uncommon and will make you feel like road kill if you don't get sufficient abouts of level 5-REM sleep.

    My doctor was more concerned with fixing the REM deficiency then deep wave. In fact, he didn't make much comment on deep wave beyond what I listed above.

    I was given a long list of medications to avoid as they delay onset of REM .... some to point of reducing REM to zero. I'll list them for you as soon as I locate it! LOL

    I'm sorry that I don't know any tricks to improve deep wave sleep beyond the usual techniques. Dark room, quiet, cool ... etc. I do know in my case, ambien and xyrem ( although great for increasing deep wave) are contraindicated due to their REM suppression.

    As you know, I take lunesta for sleep. As far as I'm aware, it is the only hypnotic that does not harm REM sleep. The supplementals gaba and l-theanine are on my list of "avoids" as well.

    I have some good news.... With your REM problem, you are not suffering from depression ! People with depression almost always get too much REM. That's why most anti-depression medications suppress it. At least it's one less thing huh?!

    I read your post about your cholesterol labs. I'm sorry to here it.... but glad your doctor feels it can be brought back down without having to take cholesterol lowering medications. Again, one less thing...!

    I look forward to hearing more about your results. I can say that 10 weeks out from my study and treatment w/ lunesta has made a world of difference in how I feel. Along with some other treatments, I feel my improved sleep has been hugh in regards to my ( fingers crossed ) remission.

    Talk soon,


    I'll get that REM suppression medication list to you asap.
  3. abbylee

    abbylee New Member

    Mikie - If you get no delta sleep then you are a candidate for Xyrem.

    Please go to the talk about sleep website and read about it. It is currently the only drug for this condition as far as I know.

    You can also call the Xyrem hotline at 1-800-823-8893 and speak with someone who is successfully taking Xyrem.

    [This Message was Edited on 08/29/2005]
  4. sofy

    sofy New Member

    I had the 2 day sleep test and thats how I got social security cuz it was so bad. I had 15.6 arousels per hour and yet had an efficency of 84.1%. The whole thing didnt add up all in my mind.

    It was the second day that they concentrated on. They made me stay awake and then every 2 hrs I got a 20 min nap. I fell asleep in less than 5 minutes each time but did not hit rem sleep. That add up to "Excessive Daytime Sleepiness or Idiopathic Hypersomnia" Those are actual medical jargon and they make me laugh every time I read or say them.

    If you hit rem sleep right away that indicated narcolepsy. They also said wakefullness after sleep onset was 71.5 minutes. That made no sense to me at all. How can you be asleep and have wakefullness at the same time.

    Actually I think I do know cuz its what I always refer to as mothers sleep. You are asleep very lightly cuz you know the baby might need you at any moment so you dont let yourself fall into a deep sleep.

    My whole rambeling is I dont have much faith in the science of these sleep tests.
  5. kierkegaardsson

    kierkegaardsson New Member

    since you guys seem to know something about sleep and sleep disorders... I have been feeling very unrefreshed by my sleep lately, and have noticed some weird changes in my sleeping patterns... Firstly, I wake up every morning around 7:30AM, without fail. I am unable to go back to sleep after this. This is strange to me, as I used to be able to sleep late into the morning. I wake up pretty dehydrated as well, and generally do not feel like I have been asleep at all. I am pretty tired throughout the day and am wondering if something is going on in my sleep that is causing this, though I did have mono about a year ago and am concerned about having CFS... Any advice would be appreciated...
  6. BxGirl

    BxGirl New Member

    I'm having my 2-day sleep study this Thursday night/Friday. My doctor thinks I have narcolepsy. I wonder what is going on?

  7. PainPainGoAway

    PainPainGoAway New Member

    I had a sleep study done in May. Most of my arousals were due to having to pee (IC) or flailing around so much that I ripped stuff off of took me 54 minutes to fall asleep but I don't know if I ever had much REM.

    I was so sleep deprived they didn't want me to drive myself home-- I had to sign a waiver to be able to leave and didn't want me driving till I saw the doctor.

    The doctor didn't seem too concerned when I had the follow-up...until the doc started asking questions about my day time habits, and realized I was young and had been dealing with this for over half my life.

    The doc said just looking at the chart he would've guessed I was IN MY 70'S...that it was about normal for someone in that stage of life to arouse frequently...etc...
    and not to do anything (part of old age) but when he saw I'm only 37, he decided to set up another sleep study for night and day to check for narcolepsy, wondering why it hadn't ever been done years before.

    Well, wouldn't you know it, during the DAY I reached REM stage quickly 2 times out of 4 naps, all of which I fell asleep in 2-7 they had to wake me up several times in between my scheduled naps.

    The doc was REALLY rude to me that I saw for my follow up to the second sleep study and said it's probably narcolepsy although FM and narcolepsy are rare...but because I am taking klonopin it interferred w/ the results-- that it could either bring on a drug induced REM or NONE at all. So I'm scheduled for yet another study -- it had to be postponed since I was gone all summer. This study they want me off the klonopin for a week before.

    My nice doc prescribed med for narcolepsy anyway, and wow, what a difference! I do not fall asleep at all during the day when I take it and it's given me so much of my life back. It took two drugs to find one that doesn't bother me.
    Anyway, he suggested good old Elavil, Flexeril, or possibly Zanaflex to induce stage four sleep. I can't take Elavil due to my bladder and I told him the other two give me bad dreams...which is an indicator that they bring on stage four sleep, since REm usually follows that. I don't want bad dreams so that's out.

    Meanwhile, I won't be seeing the other doc again-- he was so rude to me I cried all the way home. He doesn't like Klonopin...said my meds were the cause of my daytime drowsiness. He also made light of my IC. My family doc said I should've kicked him in the crotch when he suggested I ignore my bladder and I'll go back to sleep on my own (and not need Ambien and klonopin) and told him to ignore that!

    So I saw two different sleep study docs, and the one who asked for the narc test is the one I'll see again (nice one) Either way, I've been doing SOOOO much better on the narc med!
    Do you experience any symptoms of narcolepsy?

    I had to stop taking my narc med for the last 4 days because I'm scheduled to have the sleep lab done this week (which I will be rescheduling so I can get on my med again) and last night experienced severe sleep paralysis and nightmares. I haven't gotten much sleep the last week due to no klonopin. It was too stressful and I took both today.

    I wonder how many others have this. I still don't know for sure if it's narcolepsy or not, but reading about it made a lot of sense for me!
    PS My ex husband stopped breathing more than 300 times during his test-- severe apnea! He's had a C-pap since 94 and it made a big difference.
    [This Message was Edited on 08/29/2005]
  8. jenunsa

    jenunsa New Member

    (FYI: deep sleep = stage IV sleep = delta wave sleep)

    As for PROMOTING deep sleep, I've heard that exercise is supposed to increase deep sleep, but... it's never helped me much. I find that crying actually helps me get better sleep. Oh, well.
    Sorry the article is so long, but I think it's important.


    Title: Drugs which disturb stage IV sleep

    ©Marilyn J. Kerr RN 1997-2001

    Updated May 24, 2001

    We may be prescribed drugs for our Fibromyalgia and/or CFS which could, in reality, worsen our symptoms by interfering with Stage IV (delta wave) sleep.

    Stage IV is that part of the sleep cycle when the brain helps repair the daily wear and tear of the body. If it is disturbed (and therefore shortened), we awake stiff, sore, and/or without feeling refreshed. Most of the Fibromyalgia research indicates that Stage IV sleep is implicated in causing and/or influencing our symptoms.

    Every competant CFS and FMS doctor addresses "the sleep problem" and generally discourages the use of Stage IV-disturbing drugs. However, along with those specialists, if one goes to a doctor who knows nothing about Fibromyalgia or CFS, but who feels compelled to treat the sleep problem and pain the only way he/she knows, the patient may inadvertently be prescribed drugs which worsen Fibromyalgia/CFS.
    Sort of a Catch-22. There are many other diseases/syndromes that are best treated with some of these medications which disturb Stage IV sleep. If that is the case for you, perhaps a discussion with your doctor should be initiated that addresses this. For instance: "Since I need NSAIDs for my osteoarthritis and they can interfere with Stage IV sleep, is there some other way we can treat the OA and some other way we can promote Stage IV sleep?"

    This whole issue is very uncomfortable for everyone. I am not making any judgments about using these drugs. That is an issue strictly between you and your doctor.

    The Central Nervous System (CNS) Depressants - which include all the benzodiazepines, skeletal muscle relaxants, and narcotics - may create clinical depression by themselves. This becomes very important to remember when we have received mutltiple CNS depressant prescriptions, i.e., a benzodiazepine for sleep, an opiate for pain, and a muscle relaxant for spasms. While there is undoubtedly a medical necessity for such combinations, we must be aware that if depression becomes more of a problem, our prescriptions must be re-evaluated.

    Here are the results of some major searching to help folks understand those drugs and how they influence Stage IV sleep. Since I first researched and compiled the list in early 1998, it has stood the test of time. The results have not changed.

    What has changed over the years is that research has shown that people who use potentially physically and psychologically addicting drugs for chronic pain situations have been shown to not get the "high" that recreational users get. Additionally, people who use mood-altering drugs for chronic pain situations usually use the least amount necessary to break the cycle of pain - again, totally unlike recreational drug users. Therefore, though we may become physically addicted to such a drug, withdrawal is usually less of a problem since we are not psychologically addicted.

    (However, the possibility of a chronic pain patient becoming both physically and psychologically addicted to their mood-altering prescriptions cannot be ignored or considered "impossible." One only has to read the various online newsgroups with an objective eye to find folks who are obviously psychologically addicted to narcotics and other mood-altering drugs by their exhibiting true drug-seeking behavior. Unfortunately for the majority of chronic pain patients, such obvious substance abusers within our ranks lessens our credibility with the medical community.)

    I offer the list below in order that we can make informed choices in our medcial care. If the drug or its classification you're taking isn't listed here, it probably doesn't interfere with Stage IV sleep.

    Barbiturates decrease the amount of time spent in Stage III sleep and are major CNS depressants.

    Benzodiazepines increase the length of Stage I sleep at the expense of Stage IV sleep, i.e., none or little Stage IV sleep is obtained. Xanax apparently is the exception because it doesn't disturb Stage IV.
    Klonopin a member of a class of drugs known to block the adverse effects of circulating cytokines. Klonopin is also used for sleep and to treat brain injury (especially temporal lobe injury) which often is common in CFS. It is also known to increase beta wave activity in the brain during the day time and may promote development of sleep spindles at night and therefore improve the quality of sleep. However, Klonopin is still a benzodiazepine and its potential disadvantages vs. benefits should be discussed with one's doctor.

    Opiates/Narcotics: Stage IV sleep is disturbed.

    Muscle Relaxants (Soma, Skelaxin, Robaxin): Apparently don't disturb Stage IV. However, in physical dependency, they may well disturb Stage IV.

    NSAIDs cause sleep disturbances by decreasing melatonin synthesis. Tylenol apparently is okay.

    Drugs which disturb Stage IV Sleep

    Brand Name
    Generic Name
    Drug Class

    Advil, Motrin, Nuprin













    MS Contin


    oxycodone & aspirin






    hydrocodone & tylenol


    Please be aware that stopping many of these drugs without medical direction for tapering is very dangerous. Please seek medical help if you wish to stop any of these drugs.

    (To learn about herbs and nutritional supplements that *promote* Stage IV sleep, please see Abnormalities in FMS and CFS.)

    Marilyn J. Kerr RN © 1997-2001

    [This Message was Edited on 08/29/2005]
  9. jaltair

    jaltair New Member

    Hi Mikie!

    Some research has found that FMS patients fall asleep, but their deep level (or “stage 4”) sleep was constantly interrupted by bursts of “awake-like” brain activity. The alterations in the neurotransmitter regulation (particularly serotonin and norepinephrine, and substance P) cause problems with sleep, pain and immune system function. So, your physician may prescribe medicines that boost levels of those neurotransmitters. The types of medicines that help with neurotransmission include some antidepressants, and some anti-seizure drugs. (They are not necessarily given because doctors think that FMS people have “mental health” problems. The drugs act in a very real way to slow down the brain activity and help us get some good sleep.

    Some of the drugs that help include: Elavil, Flexeril, Sinequan, Paxil, Serzone, Xanax and Klonopin. Also, anti-inflammatory drugs like ibuprofen may help, as might PT, acupuncture, relaxation techniques, osteopathic manipulation, chiropractic care, therapeutic massage, or mild/gentle exercise. FMS people may also have a sleep disorder called the “alpha-EEG anomaly,” or possibly other sleep disorders, such as “sleep myoclonus” or “PLMS” (nighttime jerking of the arms and legs), “restless leg syndrome” and “bruxism” (teeth grinding).

    I think that the more we learn about the possible causes of and treatments for FMS and how the treatments relate to the studies about the causes, etc., the better choices we are able to make about what to try. That is what is so great about the boards. People are posting what helps or doesn’t help them. Best of luck with getting that wonderful stage IV sleep . . Relaxation tapes have worked wonderfully for me as well!
  10. PainPainGoAway

    PainPainGoAway New Member

    In my sleep lab, as soon as I would hit stage III or IV sleep, I would wake up-- thus no deep sleep achieved but usually once I woke up, I'd have to pee (anywhere from 4-20 times a night w/o Ambien and klonopin).

    And I experienced no or very little REM...both which are critical to function during the day. the doc said that is classic to FM but not all people w/ FM have interrupted cycles so it's still a mystery.

    It is common in the elderly to have such interruped sleep cylces, or lack some altogether.... But there were other issues which led him to suspect narcolepsy, especially since I'm not even 40!!

    There are 2 distinct states that alternate in cycles and reflect differing levels of neuronal activity. Each state has a different type of brain wave activity(electrical activity that is recorded with the help of electrodes placed on the skull, wasn't that fun. Sleep consists of non–rapid eye movement (NREM) and rapid eye movement (REM) sleep.

    REM is different from NREM<that's the sleep that has the stages, not REM, so there are really 5 stages of sleep.
    It's so complicated-- I'm trying my best to understand the difference of the two disorders, and where they link up...

    Do you know how often you achieved REM and did it follow any normal pattern? Was the doc concerned about that at all? What are your daytime habits...

    With the sleep lab during the day, REM was initiated within minutes of falling asleep, and I had to be woken up (right word?) each time (naps are 20 minutes long each), although I didn't even think I fell asleep ANY of the times! I was SHOCKED to see the report that I slept each time!

    This wouldn't show up at night -- that a true narcoleptic will hit REM sleep during the day, often in seconds or minutes, regardless of night tests because they vary. Some have disorders at night, others have normal night labs. Of course, nothing can ever be easy, can it!

    I found a bit of info on narcolepsy...there's also a type of narcolepsy related to nighttime seizers usually related to epilepsy but not always (and I can't think of the name-- sorry, but it's not true full blown epilepsy), plus there are several different types of narcolepsy. I have read in your messages before that you experienced seisure like activity...that the klonopin helped that. Well, maybe further research on your day time cycle could shed some light and help you!


    Narcolepsy is a rare disorder characterized by chronic, excessive attacks of drowsiness during the day, sudden extreme muscle weakness (cataplexy), hallucinations, paralysis while sleeping, and disrupted sleep during the night.
    Attacks of drowsiness may persist only a few minutes or last for hours, and may vary in frequency from a few incidents to several during a single day.

    Sorry so long and hope makes some sense...took my meds and need to go to bed! Mikie, keep trying to find a solution. I feel so good some days, I think I may be able to go back to work (hard raising 3 kids on my own) although I am applying for disability for the second time. The only thing that has helped me stay awake is the narc meds...but not only do I stay awake, I am alert and less's easier to pay attention to details and I feel safer driving!

  11. Musica

    Musica New Member

    in the area of sleep.

    Kierkkegardsson, it sounds like a sleep study would be beneficial. If you are waking up dehydrated, it could be a symptom of sleep apnea. When people sleep - especially snore - with their mouth open, it can result in the feeling of a sore throat and dry mouth. Not to mention feeling wiped out!

    Mikie, my sleep doc and my rheumy work together (mostly when my rheumy needs sleep info), but my sleep doc doesn't agree with rheumy's theories on lack of Stage IV having such an effect on FM. Sleep doc says he has patients who get NO Stage IV but are quite functional, and some who sleep better than babies and are in wheelchairs. He says there is still a lot to be learned in the field of sleep, so he couldn't tell me much as far as how getting more or less of one stage or another affects the entire sleep picture.

    Still, it seems a pretty widespread theory that lack of Stage III/IV sleep can have a very negative affect on FM and health. They do say that people don't get as much deep sleep at sleep centers, but NONE? I think I had 2% and I thought that was low! It's interesting that you had no apneas, though. The meds like Xyrem, Mirapex, and ropinerole (Requip) are supposed to help deep sleep. Not just to help you sleep more, but not pop out of the Stage IV, which is what happens a lot. As soon as you get to Stage IV, the brain is triggered into an arousal. You didn't have too many arousals, actually. I think I had 266 in 4 hours and it took a long time for me to reach REM sleep, too.

    Yours does sound to be a clear case of FM-related sleep, rather than physical such as apneas. It will be interesting to see what your PCP and/or sleep doc do with the sleep study results. Be glad you don't have to deal with a CPAP!
  12. TXFMmom

    TXFMmom New Member

    Zygrem is the only thing on the market which can get individuals who do not get into stage 4, into it.

    It does what sleeping pills do not, it regulates the sleep cycles and one does not have to depend on our own sleep regulation to do it.
  13. Mikie

    Mikie Moderator

    I have been researching sleep disorders online but there is a lot of good info here which I didn't find. Seems there is some conflicting info on the meds. For a long time, the Klonopin worked so well for me in getting refreshing sleep. It no longer seems to be doing that.

    I am tapering off of it very slowly and am no longer taking it during the day. The sea salt and minerals seem to be doing for me what the Klonopin used to do during the day. I think I will split the salt and minerals and do them twice a day. Maybe they will help with sleep too. I reduced my night time dose by 25 percent last night and the only thing I noticed was that I woke once about 3:45 a.m. but was able to go back to sleep.

    The onset of REM was delayed, there was some Steage Three sleep and some REM but absolutely no Stage Four sleep during the entire six hours. I will look up the drugs for increasing Stage Four sleep and consider them. I was making really good progress until about a month and a half ago. Now, I'm sliding backward.

    Again, thank you all. My sleep may well improve when I start doing aerobic exercise three times a week. My doc feels that I recovered sufficiently from the stress test that I should be able to do some light aerobics. I'm not to start them until after tomorrow when I see the cardio. I may make an appt. with the doc who read the sleep test but I don't care for him. He's the SS doc who did my eval. for them. That's not why I don't like him; he's curt to the point of being rude.

    Thanks again to all of you. I have so much going on right now that I have to sort it all out. Something else is going on and I feel as though I am getting a sinus and bronchial attack, so I'm nursing that. My head is splitting. The mold is so very bad right now. It is possible that the sleep test results were worse than normal. They had a noisy fan which ran all night and, of course, I was all wired up. Still, with the way I've been feeling, I would agree that I'm not getting enough Stage Three and Stage Four sleep.

    Love, Mikie

  14. abbylee

    abbylee New Member

    I think you're going to find that Xyrem is the best (and maybe the only) drug to increase your delta sleep. I was not offered any other drug, and I asked if there was anything else.

    I hope I'm wrong (if you don't want to use Xyrem), but it is the best drug for the problem if you can take it.

    I wouldn't go without it as it has helped me tremendously.

    abbylee PS Please call the Xyrem hotline and ask about it. The number is 1-800-823-8893. They have folks who successfully use Xyrem and you can speak with one of them. They have a fibromyalgia patient who is doing great with Xyrem, and you can ask to speak with her. She will tell you about the drug and how it's helped her.
  15. Mikie

    Mikie Moderator

    I'm looking into it. My computer slowed way down so I had to stop.

    Love, Mikie
  16. abbylee

    abbylee New Member

    You are very welcome. You can also read about Xyrem on the web as it has its own url.

    Please call the hotline and ask for the fibro mentor if you have any questions.

    The hours are 9:00 - 5:00 Central time.


  17. lucky

    lucky New Member

    I also had a sleep study done at a Sleep Laboratory and stayed over night. It was the worst night ever I'll remember, because the study was done in December and the lab was so cold that I shivered more than I slept.

    Below, I am just listing a few of the results, most importantly that there was also an absence of delta sleep with the sleep parameters reflecting a very disturbed sleep architecture.
    I had 18 apneas plus hypopneas predominantly of the obstructive type with the majority of the apneic disturbances occurring in Non-REM sleep.
    Analysis of my sleep record would be consistant with a mild form of the Periodic Limb Movement Disorder in the presence of significant clinical symptoms such as a disorder of maintaining sleep or excessive daytime sleepiness for which medication such as a Dopamine Agonist in the form of Mirapex could be considered.
    Some of my symptoms are suggestive of the Upper Airway Resistance Syndrome manifested by snoring (I snored up to a level of 60 decibels....), sleep fragmentation, daytime fatigue and episodic sleepiness.

    Best wishes, Lucky

  18. Juloo

    Juloo Member

    Or, what I was trying to say, is that REM does not ONLY follow Stage 4 sleep. If you look at old sleep charts, reading from the top you have 1, 2, 3, 4, REM. If you look at new charts, you see REM on top *then* 1, 2, 3, 4.

    If your doctor learned all (hah) he thinks he knows about sleep medicine in the 1980s and he sees any REM at all, he might say you were getting enough deep sleep to reach REM, and that's enough. But now sleep researchers know that it is possible to do 1, 2, REM, 1, REM, 1, REM, 1, 2, REM, 1...etc. all night long and get no deep sleep whatsoever.

    This was not to the original post, but to the poster who wondered if you were doing 1, 2, 5 (REM). It's not that linear. REM can follow any sleep stage, and for a lot of us with sleep problems, we just don't hit the deep sleep.
  19. jsshutt

    jsshutt Member

    Mikie: I had almost exact sleep results as you on my sleep study.

    I have been saying for awhile now, along with my Dr, that klonopin interferes with stage 3 and 4 sleep.

    Unfortunately I am among the few that are physically dependent on the drug (1mg only) and have been trying to come off for years.

    I have tried Topamax and it works OK but gives me fake sleep. Now I have to take Concerta because the Topamax and Klonopin were making me so sluggish sleeping all day.

    I cannot get my insurance to pay for narcelepsy drugs and my Dr doesnt want to try Xyrem because it is relatively new.
    Still researching it, though. And for a friend who has narcelepsy, he thinks, but doesnt want to get diagnosed cause he would lose his job.

    If you get anything on the med that is helpful as far as getting it prescribed without a diagnoses of narcolepsy, please post it.

  20. abbylee

    abbylee New Member

    My daughter and I take Topamax for migraines. Are you taking it for sleep??? It doesn't make either of us sleepy.

    Just curious, and thanks.