Sleep Study

Discussion in 'Fibromyalgia Main Forum' started by ktp812, Jun 17, 2010.

  1. ktp812

    ktp812 New Member

    I have had chronic fatigue for almost 6 years..I have been diagnosed with CFS and at one time Lyme Disease.
    I was sent to a sleep disorder specialist in 2006 but an overnight study wasn't done because they told me unrefreshing sleep and insomnia are symptoms of CFS.

    Over the years many of the doctors I saw talked about me having one done but..I am now scheduled to have one Monday night because my only symptoms are chronic fatigue/daytime sleepiness and sometimes physical exhaustion.

    I am just wondering how many people here had an overnight sleep study done and what did it show..I am at the point where I feel I have to explore this possibility since every other test has been done.

    I have read that most of the studies done on people with CFS show nothing much abnormal but I still feel that my sleep is very disturbed somehow and I am not getting quality sleep. I feel terrible everyday when I get up even though I do mostly sleep through the night (with lunesta).

    I use to have wonderful, peaceful refreshing sleep until I had the flu almost 6 years ago and that is when it changed.

    Any thoughts? Thanks
  2. Juloo

    Juloo Member

    These were within two or three months of the other. They showed "markedly disturbed sleep", mild/moderate apnea, 3 or 4 minutes of slow wave sleep (stages 3/4) for the entire night. No RLS, no alpha intrusion.

    At the time, I got no help from the pulmonologist who did the study. Later, because I had the information from the studies, I was able to go on Xyrem. It fixed the deep sleep problem, but I'm not on it now because of expense. I'm hoping that when (if!) it is approved by the FDA for FM this fall, I'll be able to get my insurance to contribute so that I can go back on it again.

    I have both CFS and FM, with CFS being the worst of the two. FM is mild, but may intermittently be moderate for short stretches of time (like 2 or 3 months).

    My CFS has been ongoing for over 12 years now, although I am doing better than I was, but I am, by no means, cured.

    [This Message was Edited on 06/17/2010]
  3. gapsych

    gapsych New Member

    I think most people with CFS and FM have sleep problems but will have to look this up.

    My last sleep study around 8-10 years ago confirmed the RLS, very little Stage 3 or 4 sleep and possibly narcolepsy.

    I had two in May. The first showing I had sleep apnea with an average of stopped breathing for at least ten seconds, 51 times per hour. I had no idea. The second study was the CPAP titration. Since the CPAP I have seen slow improvement with minor setbacks as there are a lot of things that need to be adjusted at first. Just the last couple of nights I started dreaming again which may indicate that I am also starting to get more restorative sleep. During the titration study I did not go into stage 3 or 4 at all so that is one reason for the adjustments as it is during these stages where you have more of the apneas.

    Most likely it was the 8-10 year mark when I started the apnea as I did have some at that time but not enough to be treated. This is something that can happen even if you don't have OSA. But this is when I started snoring.

    As I said I was absolutely shocked that I would wake up that many times per hour and not remember it. I thought it was going to be the same, disturbed sleep from FM pain, RLS which is rarely bothersome with medication.

    I now have my CPAP adjusted to an APAP which means the machine reads any apnea event and adjusts the pressure accordingly to get a more accurate pressure.

    This is when I started seeing more improvements.

    I have had no problem with getting comfortable with the CPAP/APAP. The new machines are quiet and the mask which really isn't a mask is not obstrusive at all. They are called pap pilllows and gently fit over the nostrils and the air creats a vacumn. I will wake up thinking they are not on only to find they are.

    If you think you might have this, there is a great support board called For other sleep problems including apnea there is a board called talkaboutsleep. It also have a Fibro board but it's not very active
    I think this is the first week I have seem steady progress. It just takes time and I am hopeful. Any amount in improving the quality of my life will be a step in the right direction.

    Good luck with the study and let us know how it goes.


    [This Message was Edited on 06/17/2010]
  4. gapsych

    gapsych New Member

    Are you on a CPAP? Even mild/moderate SA needs to be treated.

    If you have OSA/CSA I would like to hear your experience.

    I am fortunate as I have a very good sleep doctor and the follow up with the pulmonary therapist has been great.

    If you have OSA and are taking anything that depresses the central nervous system, that can be a deadly combination if you are not getting treatment for the OSA.

    So sorry you were not able to get back on the Xyrem. There are lots of people on talkaboutsleep, can't remember if it is .com or .org, who are on this.

    Take care.
    ETA What was your apnea score or AI? Did you have any hypoxia?[This Message was Edited on 06/17/2010]
  5. ktp812

    ktp812 New Member

    I had a call yesterday from the sleep clinic saying I might have to pay out of pocket..the insurance company will not pay unless I already have a diagnosis of OSA..How can you have a diagnosis if the study hasn't beeen done.

    They were going to call my doctor and get back to me. My doc was ordering this because I have had chronic fatigue/exhaustion for 6 years..that has almost completely destroyed my life. What is wrong with these companies???

    I am not sure what I am going to do. I already have a co-pay of 1,200 we have to come up with . It is strange because I was in Lyme treatment for almost 30 months and they paid for it all without a positive diagnosis!!!

    I need this study done..I will post back and let you all know what happens.
  6. Juloo

    Juloo Member

    The pulmonologist did not recommend any treatment at all. I made my husband angry, because it was his doctor as well, and my husband complains all the time about me snoring. What ended up happening, for better or worse, was that when my husband got a new CPAP machine, he 'gifted' me his old one, so I use that one. I use it generally when we are at home (my husband takes his everywhere if he is away from home overnight), although I really don't know what percentage of the night I use it. I always wake up with it off, but I don't remember doing it.

    The Xyrem itself freaked me out a bit when I began using it -- it actually got me to be much more regimented about using the CPAP, for the exact reason you state. I've actually had what I consider to be mild central apnea during the day on some occasions (I have to concentrate to breathe, and if I don't, I find myself gasping to catch up with what should be a 'regular' breathing pattern).

    The two together gave me great sleep after I finally worked out the right Xyrem dosage. The prescribing doctor had copies of my sleep studies, so my potential problems were known. Off the top of my head, I don't remember my AI -- I know where the studies are, so if I'm digging around there in the next day or so, I'll look it up. I can check on the hypoxia as well.

    My husband's had so many sleep studies that we can't even count them any more. The funny thing is that once, a co-worker and friend was visiting, sleeping in the next room from us. He snored so loudly that it was frighteningly obvious when he stopped, and he stopped A LOT. Fortunately my husband and I were able to convince him to go to see a doctor about it, and he ended up having a huge number of apneas -- more even than my husband -- and having his blood oxygen level drop seriously. He's on CPAP as of about a year ago, and is doing better enough to notice a difference when he doesn't use it.
  7. ktp812

    ktp812 New Member

    First I want to thank everyone who replied about their studies. I like to read what other people's results were and I am really looking forward to Monday night.

    They called from the sleep center and said my doctor gave me a diagnosis of OSA in order for me to have the study done. Of course he has no idea if I have this or not until the study is done. They did ask if I was claustophobic in case I had to put a mask on during the night.

    I will be taking a lunesta or else I know for certain I will not sleep well or much at all. Even though the sleeping pill gets me through the night I still wake up totally unrested and unrefreshed so I can't wait to find out my results.

    If any one else has any sleep study experiences I would love to hear about them..Thanks
  8. gapsych

    gapsych New Member


    Congratulations!!! I hope this will help. It is so important to get a good doctor for the sleep test. What a horrible experience for you. Was the pulmoninary Doctor certified for specialization in sleep. Some are some aren't. Same with neurologist.

    Someone asked if there are different types of sleep tests to pick up things other than apnea. A general sleep study will pick up most sleep difficulties with the exception of a home test just approved by medicare which will only pick up the apnea. Sometimes it may take more than one sleep study to get the most accurate information.

    Broadcasting. My CPAP is now an APAP. The difference is the setting. At first I was on the therapeutic pressure from the sleep study. The same pressure was continuous. CPAP. However, since I had very little deep and REM sleep plus a few minor problems with the CPAP, the setting was switched to APAP . it "reads" your apnea events and adjusts the pressure accordingly within a certain range. I don't know if once we get this information if I will go back to CPAP or stay on the APAP.

    I am new at this so hope the above is accurate. is a good website to get information. Maybe others can chime in.


    ETA I think I confused two people, so please adjust the above accordingly. If I go to edit, I may make it worse.

    Just wanted to add how important it is to be on the right setting for the CPAP and to not change the settings yourself. If you are on too high of a setting it can cause central sleep apnea where the brain tells you to stop breathing. Best advice is if you have concerns about your sleep get a referral to a sleep specialist.[This Message was Edited on 06/18/2010]
  9. ktp812

    ktp812 New Member

    The tech told me they would be recording my brain waves during the study...of course I hardly slept so the test was worthless..
  10. 3gs

    3gs New Member

    ktp812 same results happened with me! I have requested another one but my joke of a doc. won't order.
  11. gapsych

    gapsych New Member

    An EEG is standard in a sleep study as it can determine what stages of sleep you are in, nocturnal seizures or any other brain activities during the test.

    [This Message was Edited on 06/23/2010]
  12. ktp812

    ktp812 New Member

    I am praying my doctor will order another one. The tech said he would have the results pretty quickly since there isn't much data so I am hoping to hear from him in the next week.

    Since I am pretty certain I have some type of sleep disturbance I am thinking I will be able to. It will mostly be up to my insurance if they will pay for another.

    I think the tech said I slept less than 2 hours so I am pretty certain there isn't much there..
    They did have me try on a mask in case I had to use one during the night. It was very strange to breath into it. I felt like I was suffocating..even though it was only for less than minute...
  13. gapsych

    gapsych New Member

    While it is no guarantee it is essential that your doctor has a certification from the American Academy for Sleep Studies.

    BTW, I am now on CPAP and am seeing a lot of improvement. The mask I wear is the pap pillow which really aren't like the other masks. I need to update on my progress with the CPAP.

    I know I had very little Stage3 and Stage4 sleep, so they had to extrapolate what my AHI (apnea.hypotnea index). Because of that I have had a few minor adjustments with the pressure. I think I have been getting better sleep than I have in the last 15 years, even before this DD.

    Good luck.


  14. ktp812

    ktp812 New Member

    I had a tube in my nose like an oxygen thing and then something across the bottom of my nose. The tech told me that is how the apnea is diagnosed.

    They told me a neurologist will analyze my study which of course there isn't much off and then send my doctor a report. If they feel that I need to see the sleep specialist then I will make and appt. with him. I am not expecting that since I had no sleep to analyze...
  15. DeterminedOne

    DeterminedOne New Member

    I have a sleep study in 1 hour. Not for my FM but to test for sleep apnea. I was gaining weight and had my thyroids checked which came out normal of course. The endocrinologist I was send to thinks the weight gain along with my snoring and sleep problems could be sleep apnea.
    This is my first sleep study and everything is happening so fast. I am so tired and just want to go sleep. When I read about the tubes and electrodes they'll attach on me and possibly a CPAP I get freaked out. I wonder how many people actually do get any sleep under such condition.
    I really hope I get some sleep. I will write back about my experience tomorrow.
  16. Mikie

    Mikie Moderator

    It showed that my brain was never able to get into the restful brain waves or if it did, other intusive waves kept me from getting any kind of restful sleep. I started taking Klonopin which enabled my brain to quiet down so that I could go through the normal stages of sleep. The test showed no sleep apnea.

    I was shocked when they threw me out about 3:00 in the morning because they had gotten what they needed. How rude!

    Love, Mikie
  17. DeterminedOne

    DeterminedOne New Member

    The sleep study experience was not as bad as I thought. The technician was very nice and made me feel comfortable and I slept most of the 6 hrs I was there. The results will be available in 2 weeks.

    I am very thankful that my insurance pays all cost and how thorough my endo is. He has told me that he is looking at various possibilities. The sleep study was one of them. He did the 24 hr urine test and also wants to look at hormone issues. He asked me about my irregular periods and shook his head in disbelieve when I told him that no one took it seriously.

    Hi Jam, yes thyroid is still a possibility and we are looking into it. The thyroid tests that came normal was from my general doctor. The endo hasn't finished the examination process yet. I focused on the sleep study because that's where I am in the process at the moment and this is the sleep study thread. I'm happy for you that you found relieve with Armour. I think there are good doctors and bad doctors regardless what their specialty area is.

  18. DeterminedOne

    DeterminedOne New Member

    Wow, they threw you out at 3am? That is rude. They make time arrangement according to the technicians work hrs. It's a business and sad that this happens.

    They threw me out at 5:30am which is when he said I started to dream. The technician isn't supposed to tell you anything but because we connected well he did answer some of my questions and said I didn't snore or stop breathing at any time through out the night. He also said that adults don't ever enter stage 4 sleep, that only kids do but I think he doesn't know what he is talking about and I can't wait to find out the real deal from my doc.

    I'm happy that you don't have sleep apnea and I hope the same is true for me.

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