Sleep study results...comments?

Discussion in 'Fibromyalgia Main Forum' started by ravenpaige, Feb 21, 2007.

  1. ravenpaige

    ravenpaige New Member

    We went to my daughter's neurologist today to get the results of her sleep study. Bottom line: no apnea incidents, no narcolepsy. Her sleep stage levels were all within range: low on stage 1, high on stage 2, low on stage 3/4 and low on REM. Still, all were within acceptable ranges, as the neurologist explained.

    When we got there, my daughter mentioned to the nurse that her back hurt (it always hurts, of course, but today was a pretty good day). So when they neurologist came in, she said: "So what's this about your back hurting?" I've got laryngitis today, so I wasn't speaking well, so my daughter piped up: "Well, I've got fibromyalgia, duh!". Now, the neurologist definitely should know this...this was recorded on their intact form as the reason for the consultation, plus, I really took the neurologist to task at the last appt because she starting talking about she thought the only thing wrong with my daughter was "delayed sleep syndrome" so I asked her if she knew anything about fibromyalgia, at which time she admitted she didn't ("I'm just a neurologist" I believe, was her response.)

    Ok...well, at least we learned something, and can cross sleep disorders off this list of possible alternate causes. My daughter has been ranting ever since, however, about the waste of time, 24 hour sleep study, appointments, etc, to be told essentially "well, everything looks normal to me." It gets old after a while.

    Well, just wanted to rant, thanks!
  2. ravenpaige

    ravenpaige New Member

    Well, I guess I'm so mad, I'm talking to myself. But I forgot to add that the cost of the sleep study was about $3700. Plus, two appointements with the doc probably easily got it up to $4000. (Of course, insurance is paying for it, or at least so they say.) I don't know how these people sleep at night.
  3. llama

    llama New Member



    Sorry you've had such a futile result from all the hassle of appts, tests, etc.

    Wish I had something comforting to say...I've had two sleep studies that showed mild apnea and NO stage 3 or 4 sleep.

    I was basically only offered a CPAP...couldn't get used to it for a number of reasons. So now I'm just left with very inadequate sleep, and no one is directing me to any other options. (I also see a Neuro., he's actually very informed about Fibro...one ace in the hole for me).

    Again, sorry you felt like you were talking to yourself. I know how it feels to start a thread and no one seems real interested in replying.

    Actually I do have one suggestion. Contact your local Fibro/ME support group (hopefully you have one somewhat close to your area) and ask them for a name(s) of a good Neuro...one who is well versed in Fibro issues. That's how I found my "good" Neuro.

    Good Luck........Jill..........
  4. ravenpaige

    ravenpaige New Member

    Thanks so much for the reply. Actually, we seem to have not much of a support network around here, and finding doctors who are knowledgable seems to be very difficult...but I have gotten a few good leads from here!
  5. connieaag

    connieaag New Member

    My daughter's study revealed nothing either except borderline narcolepsy from the daytime study. I can tell them why that is.... she doesn't feel like she sleeps at night, so she can easily fall asleep during the day since her body is worn out!

    We are in Lafayette. Riley diagnosed her but not any help after the dx. I know our big problem is finding doctors who take patients under 18 that have FM.

    Best,
    Connie
  6. ravenpaige

    ravenpaige New Member

    I don't know...maybe this is a problem throughout Indiana. It certainly is a problem here (near So. Bend).

    I'm thinking about Ann Arbor. I've heard good things...but what a drive!
  7. roge

    roge Member

    well that is a problem. how low, what % of her sleep were in these stages and more importantly what % was in stage 4 , I would say not very much if anything at all. Did you get a copy of the sleep study?

    of course most sleep specialists and or Neuros dont view this as a problem and I don't know why. I know they view LOW REM as a problem and you say your daughter has low rem, again how low?

    no plms, no rls, no apnea and sleep architecture is fine, ya these are all the "standard" things but low rem and especially low stage 3 and 4 is a problem and the low stage 3 and 4 is very common in FM and would think ME/CFS as well but not sure.

    peace
  8. roge

    roge Member

    i re read and you say all the stages all in acceptable ranges, well i give this neuro some credit for even mentioning this as many dont!

    curious to know what the acceptable ranges are: not sure how old your daughter is but an average % for stage 3 and 4 is around 15-20% of total sleep time, this obviously decreases with age but even 80 year olds get some stage 3 and 4. These ranges should ideally be based on one's age as is testosterone and other hormones.

    If your daughter is under 30 and her % in stage 3 and 4 is less than 50% of the 15-20% figure, then this is a problem and obviously the closer to 0% an even bigger problem.

    I am 36 and my sleep study in 2004 showed I got a whopping 1% in stage 3 and 0% in stage 4.

    peace
  9. AquariusGirl

    AquariusGirl New Member

    If so, what did you use--i tried gabitrol,ambien,melatonin and nothing made me feel refreshed the next morning after sleeeping all night. i got 0% in Stage 3 or 4.
  10. ravenpaige

    ravenpaige New Member

    Here's the numbers. I don't think they look bad, pretty much what I expected.
    Stage I 2.1% normal 3-9%
    Stage II 66.7% normal 47-67%
    Stage III/IV 9.9% normal 3-21%
    REM 21.3% normal 20-29%
    Sleep efficiency 88% normal >90%
    sleep onset 35 min
    REM latency 84 min
    Arousals 56 norm <40
    Awakenings 5 norm <7

    Note that the neurologist did not offer the sleep stage results. I asked for the % of Stage III and IV, and she had to go get the report. She is also recommending "clinical correlation" which I intrepret to mean "I can't find anything wrong, so why are you sending this kid to me?" Someone correct me if I'm wrong.

    From what I can interpret, the numbers are all within or almost within normal range, although the Stage III/IV (these weren't given separately on the report) are in the low range, as is REM, while Stage II is just at the edge of high normal. Arousals were above normal, awakenings not.

    So, I told my daughter, this just means that there is no specific sleep disorder that is causing her fibromyalgia. This, as I said, didn't surprise me, but she has been hearing for so long that "everything's normal" without ever feeling normal, that she's really sick of it. I won't tell you how many negative strep tests she has had for her perenially sore throat (all negative, of course). It has become an inside joke (although not terribly funny, after all).

    Thanks to everyone for their input!
  11. LittleBluestem

    LittleBluestem New Member

    I don’t think that the sleep test was a waste of time and money. I think it is important to know that she does not have sleep apnea or narcolepsy. If you had a breast lump biopsy and found out that it was benign, would you think it was a waste of time and money?

    I do not know anything about sleep cycles, so the following is a generality. I am suspicious of test results that are barely within normal. My mother had a problem with anemia. When her red cell test would come back at the bottom of the normal range, the doctor would tell her that she was fine. Her response - to us, not to him - was that he could call it fine since he didn’t have to live with it.

    With so many of you daughter’s results at the edge of the normal ranges, I wonder if this can truly be a normal sleep pattern. It looks to me like the sleep efficiency is outside of the normal range. I do not know what that means, but I doubt that it is a Good Thing.
  12. roge

    roge Member

    raven: ya results look ok, although would like to see % stage3 & 4 at 20% for someone under 30 years of age, so your daughter at 9% while decent is not great. That being said i would glady take 9%, even 5%.

    acquarious : i have found nothing that increases my deep sleep (only proven drug in studies that does is xyrem). maybe one day i will try this but not at this point. I have tried clonazepam, ambien, flexeril, elavil , tryptophan, 5 htp, melatonin, valerian, you name it, and while some of these make me sleep longer and stay asleep more I have not found they make me consistently and long term feel more refreshed and any benefit I might get from something that may increase my deep sleep has to be balanced with the side effects. Suffice to say and most of you know here, this is no easy task. I would also say there is a actual gene for slow wave sleep so we are likey battling genetics here as well.

    peace
  13. tngirl

    tngirl New Member

    When I got a complete copy of my sleep study that was performed 3 years ago it said I had mild alpha delta sleep wave.

    ask for a copy of the study and see if it mentions that alpha delta pattern. I've read that a lot of people with fibro have this.

    I'd already diagnosed myself research. Seeing that was in the sleep study proved my own diagnosis right.

    The doctor never told me that when he explained the sleep study. He basically told me that I completely stopped breathing every 20 minutes on non rem sleep and every minute of Rem sleep.

    I use a Cpap every night.

    Other options besides a cpap are mouth guards to wear at night (that works for some) that keeps your airway open.

    Also I know a man who had a trach put in, he told me it was because he couldn't adapt to a cpap machine.

    There is also surgery as an option. The go in and basically trim you up so there's no obstruction.

    [This Message was Edited on 02/28/2007]