Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Has anyone had a sleep study?

Discussion in 'General ME/CFS Discussion' started by jess100, Mar 17, 2015.

  1. jess100

    jess100 Senior Member

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    I asked my GP about ordering one and now there is a kit that is sent to your home. You put a few monitors on and go to sleep as usual (or you lie there most of the night, cursing,like I did-bc I couldn't sleep)
    Results are automatically sent to the company who discusses them with your doctor. I finished my test this morning and doctor called at about 11 and had already talked to the company. According to this, I have mild sleep apnea and so I can get a machine, which should be covered by insurance. My doctor feels it's worth a try to see if there is any improvement. I agree.
    I wonder why a sleep test isn't ordered for all of us-as a regular practice. It might be the whole problem for some-which would be great. Or it might just improve sleep for others and we'd feel somewhat better.
    Has anyone had one of these tests? Benefitted from the machine?
    Wouldn't it be great if this solved the problem?
     
    Valentijn likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you do a Google Site Search you will find quite a few threads on sleep studies as many of us have had them.

    Sushi
     
  3. snowathlete

    snowathlete Not an ol' sleazebag

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    I had a full sleep study, it was ordered by the doctor who diagnosed my ME/CFS. She said that she was certain I had ME/CFS but my sleep was so bad at the point she felt I needed specialist help. Sleep study showed my sleep was all wrong, but nothing they could label it as. I got treatment that helped a lot, though my sleep is still a mess compared to healthy people.
    In many cases, sleep apnea should be ruled out.
     
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  4. deleder2k

    deleder2k Senior Member

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    I had a sleep study which showed minor sleep apnea. Had swollen tonsils so doctor ordered a tonsillectomy. No more snoring, and no sleep apnea. It did not lead to an increase in energy though..
     
    Valentijn likes this.
  5. catly

    catly Senior Member

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    @jessI had a sleep study which was poorly done from my perspective. I took 10 mgs of ambien and only feel asleep for a couple of minutes when they came in and woke me up because I moved one of the wires. Needless to say I don't think a slept more than 20 minutes yet they concluded that my test was normal. So--the quality of the place that does the study is key.

    But to echo your question, I often wonder sometimes if our sleep issues were addressed appropriately if it would help. I was/am very interested in trying the new sleep medication Belsomra because it works on different neurotransmitters responsible for sleep but it's not covered by my insurance and it's pretty expensive. If Ambien stops working for me, at least I know there will be other options in the future and hopefully by then it will be covered.
     
  6. helen1

    helen1 Senior Member

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    I had a sleep study too, very poorly done as well. Bright lights, noises, only fluorescent lighting (no reading lamp). I slept much less than usual. They found PLM - periodic limb movement disorder. I know that's not causing my sleep issues, so ignored the proferred medications with major side effects.
     
  7. August59

    August59 Daughters High School Graduation

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    I've had 4 PSGT's and 1 MSLT.

    Results: No deep sleep (slow or delta) PSGT test, except the one taking Xyrem in which got a whole 9 minutes of deep sleep. MSLT indicated Narcolepsy, but it was at a time when I could sleep 15 hours a day. Right now I can only sleep 5 hours max per day.

    My sleep specialist wants to do a new MSLT, but financially it's impossible.

    I had a very few "central apneas" on one test and the next had "alpha intrusions"

    No limb movemovement and very low amount and short obstructive sleep apnea events.

    Sleep specialist supports the possibility of inflammation in the hypothalamus region, until a very sensitive test is developed the medical community will not recognize it.
     
  8. Amaya2014

    Amaya2014 Senior Member

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    I had one back in October. Mines was performed in hospital overnight. Mild apnea was diagnosed and I've been on a CPAP since. The machine helps me with a better quality sleep but I still wake up feeling "unrefreshed". The CPAP has had no impact on my energy throughout the day or inevitable crashes from exertion and/or over stimulation.

    I've been on Elavil 25mg which I find tolerable and it helps with sleeping throughout the night. It's also had a positive impact on mood, of course.

    I think overall the treatments are helping to improve my quality of life, but I can't say anything has been resolved in returning me to normal function.
     
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  9. jess100

    jess100 Senior Member

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    Is PLM similar to restless leg syndrome? If so I have heard that a good quality (absorbable) magnesium supplement could help. At least there wouldn't be side effects-yikes.
     
  10. jess100

    jess100 Senior Member

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    Oh sorry to hear it hasn't helped much-and you're still crashing. My CPAP is coming tomorrow and I'm willing to give it a fair trial, because my sleep is terrible so this can't hurt anything. Glad to hear the Elavil is working for you.

    I have never slept and felt good in the morning-ever. Even as a teenager I didn't function well in the morning. and now it's worse. Did you ever have "refreshing sleep"?
     
  11. Amaya2014

    Amaya2014 Senior Member

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    @jess100 I have a mask that fits over my nose (it was much more comfortable for me than the nose-mouth system). I think it's all based on personal preference. The only problem I had was a small discoloration of the skin in between my nostrils. It fits well and doesn't move during sleep.

    I've always been a great sleeper prior to becoming ill. I'm active military for 10 years now, so there was a transition to learning to function on less sleep but I can't recall ever waking up feeling as if I hadn't slept. Even on nights when I got as little as 4-5 hours I never saw much impact on my daily functioning.

    I did have a baby in 2011 and went through the sleep deprivation of most new parents but I was able to take power naps and would feel pretty good. Now, I can barely remember what it feels like to wake up and jump up ready to face the world.

    I can't imagine what it must be like to not know good sleep. I hope the CPAP helps improve this for you. It may take about a week to adjust to using it. Please let me know how it's going and Good luck! ;)
     
  12. jess100

    jess100 Senior Member

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    Wow that's a really crappy sleep study. How can any conclusions be drawn? Even if sleep is not "the problem" we still need good sleep to function. It's so critical to health, immune function, mood, etc.
    Just wondering if you've tried any of the natural sleep aids-several of them have worked well for me. I actually felt human for almost a week.
    Wow that's interesting-I have wondered about lack of deep sleep. And a theory about inflammation of the hypothalamus region is interesting too.
    Thanks for your reply
    I can't imagine waking up and feeling ready to face the world!! I'm happy to hear there is an option for a nose only mask-that sounds like a much better option. I will ask for that if the face mask seems too cumbersome.
    Sorry to hear you're sick and have a little one. I can't imagine dealing with fatigue and being a parent.
    Thanks again for this information
     
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  13. helen1

    helen1 Senior Member

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    @jess100 I don't think RLS and PLM are the same; maybe some similarities. Yes for RLS magnesium helps for sure. What helps most though is to cut out all free glutamates from your diet.
     
  14. belize44

    belize44 Senior Member

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    I have had three sleep studies over ten years, but they were a waste of time because I never really slept. I explained this each time, but they continue to document that I have no real problems. My husband says that I snore, and some times I gasp for air, but this only happens if I achieve deep sleep, which I find to be impossible in a strange bed in a strange room with staff gossiping outside the door.:mad: Then, there is the fact that they wake you up and kick you out very early in the morning. My doctor says that my insurance won't pay for a home sleep study for some reason.
     
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  15. perchance dreamer

    perchance dreamer Senior Member

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    @belize44, maybe you should check with your insurance company to confirm they won't pay for a home study for obstructive sleep apnea. Sometimes representatives will give you different answers. I always ask their names, hoping it will make them answer more accurately if a wrong answer could be traced back to them.

    Not paying would be so illogical: It's much, much cheaper for them to pay for a home test than a lab test. But insurance companies aren't always known for logic. (Understatement of the year here?)

    I've found over the years with different insurance companies that sleep studies are one thing they are willing to pay for without too much of a fuss.

    It sounds like you really need the test. If you confirm insurance won't pay, one option that has worked for me is to write a letter to your insurance company and copy your State Board of Insurance and anyother people you think your insurance company would hate to have a complaint filed with such as H.R. if you have insurance through an employer.

    I got the idea from a great book: Shocked, Appalled, Dismayed: How to Write Letters of Complaint that Get Results.

    http://www.amazon.com/Shocked-Appal...8&sr=1-1&keywords=shocked, appalled, dismayed

    If you do write a letter, I'd sprinkle in some info on the dangers of undiagnosed OSA such as accidents, debility, and death.
     
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  16. belize44

    belize44 Senior Member

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    Thanks! I will check into that book, too.
     
  17. sianrecovery

    sianrecovery Senior Member

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    My friend - thin, female, in her fifties - discovered via this route she had profound sleep apnea. Sleep studies are a vastly under-utilised tool in diagnosis.
     
    moki likes this.
  18. PennyIA

    PennyIA Senior Member

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    I've had a full sleep study. They said my sleep was text-book perfect.

    I still woke up feeling like I was hungover and barely able to function. But, then again, I'm one who routinely gets 8-9 hours of sleep every night and rarely have trouble sleeping. I just can't wake up 'refreshed'. So, while I think that it's great for apnea and restless leg detection - if the issue is refreshing sleep - I don't think they are tuned into something they can monitor for that.
     
  19. RDNZL

    RDNZL

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    I've had two, both in hospitals. The first was in a very uncomfortable bed -- basically a hospital bed -- and the tech was in the next room where I could hear all kinds of beeping. Even though I slept hardly at all I was kept all the next day for the rest of the study. When my doctor got the report (conclusion "idiopathic hypersomnia") he said it was one of the worst he'd ever read. The second was in a different hospital, this time in a single room, with a very comfortable bed. Unfortunately I didn't sleep much this time either, and was told that because I didn't sleep for 6 hrs. they couldn't do the rest of the study. All I got out of that one is that I didn't have sleep apnea.
    BTW I have a traumatic brain injury from an automobile accident 16 years ago. I haven't gotten a decent night's sleep since, rarely sleep more than 2 hrs at a time and never more than 4 hrs. a night.
    Good luck with your study. I'll underscore the point others have made, that it all depends on the skill and qualifications of the administering doc and techs.
     
  20. MNC

    MNC Senior Member

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    I've had two as well, in two diferent hospitals. Both showing alterations of every kind, low sleep quality, etc.

    But it didn't change anything. No different treatments that I hadn't tried. Pills and more pills that do more harm than good and I ended up quitting for their side effects and because they only made my sleep much worse.
     

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