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 recovered from CFS from a C-Pap machine?

Discussion in 'General Treatment' started by Whit, Mar 1, 2013.

  1. Whit

    Whit Senior Member

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    I was diagnosed with mild sleep apnea at the Stanford Sleep Center. I went back for a C Pap sleep study follow up, and they didn't prepare me at all for how intense wearing the machine was. It was a huge shock when they turned it on and that much air was forced into my nose. Pretty irresponsible if you ask me. I had a panic reaction (not normal for me either I don't have panic attacks) and it was really hard not to have a lot of anxiety from it after that. I couldn't sleep all night. So they got no data and it was useless not to mention really hard on me.

    And I haven't gone back because I don't think I'd sleep if i tried it again. I think it would take me using it at home over a period of time to get used to it, and they have no advice or help for this situation, they just tell me to come in for another multi-thousand dollar test which will be useless. Kind of a cookie-cutter CPAP factory if you ask me.

    So I'm wondering if anyone here, or you know has recovered from full CFS symptoms from a CPAP machine. PEM, high viral tiders, brain fog, muscle problems, almost completely bedridden unable to hardly speak.
     
  2. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I'm sorry about the difficulty. It is a bit shocking, I know.

    I'm also sorry you are so very ill.

    if a person recovers due to CPAP, their primary diagnosis is sleep apnea.

    However people with ME do get apnea, upper airway resistance, and the like, and treating these can result in an improvement. One will sleep better, and a lot of cell repair happens during sleep - the better the sleep the better the cell repair. Also should reduce fatigue a bit.

    Also apnea can be dangerous.

    I'm unclear whether they brought you a machine during your sleep study, or if they sent you home with a machine to try? My understanding is that they don't bring you a machine during a sleep study unless they see pretty significant abnormalities.

    I did get used to the air, but it took a little while. It helps to keep the mouth closed (opening the mouth causes a feeling of a rush of air - almost seems like drowning). They have a variety of different mask styles to try; it's possible a different mask might help. Does your model have a humidifier? The most air is soothing (not necessarily the volume but the moistness) to me, and it can help reduce irritation to membranes.

    Also the settings for how much air is blowing can be adjusted. However the setting will partly depend on the blockage events you are having. I'm told that if you cannot get help from your clinic, you can call the manufacturer of your machine. I have not tried that.

    I'm not actually using my machine much right at the moment, due to some things unrelated to ME or apnea.

    Another thing to consider is that it's a lot of work to clean the machine all the time.

    However apnea can be very serious. If they think you have this, I would try to look into it if you can. (I understand the tests are expensive and it might not be possible).
     
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  3. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    ps, not everyone with apnea/airway resistance will benefit from CPAP. but at the moment we don't know who is in which category - we just have to try the machine and see.
     
  4. Whit

    Whit Senior Member

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    Yes, I went in for a follow up sleep study with the machine, and yes of course they tried a million dongles and dingles. Didn't matter. I felt like I was getting waterboarded with air. Airboarded? I imagine with time I could get used to it, but it would require using it for brief periods over time, which apparently is not possible. They have one, narrow minded approach. Come in for a sleep study or get lost.

    Other problem is that my mouth hangs open, so I'd have to strap it shut every night. And I already sleep with eye goggles for my dry eyes, and with foam taped onto my ears so the crows don't wake me up in the morning. With a cpap and head strap as well it would be absolutely ridiculous.

    Mild sleep apnea is not considered dangerous and that's what they said I have.

    I know that if someone recovered from CFS symptoms using a Cpap, they would not have CFS.

    My question is whether anyone has had all these symptoms and recovered using a CPAP. My question is whether "mild" sleep apnea could possibly cause all these symptoms. I'm doubtful. So far I've just decided not to pursue it.
     
  5. lnester7

    lnester7 Seven

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    The Cpap has a set up (If you try one of the new ones) that has an automatic setting, so is normal air then only goes on in high pressure when u have an apnea and only as high as u needed.

    I tried that set up you are saying and about died of gas, Yes CAPAP will give u terrible gas!! It took me till now (about 8 months) to find the right mask (tried them about all) and the right settings to be happy with it, The only reason I kept trying is because even I had bad night on it, I felt better in the morning, I didn't feel like a truck run over me. And overall gave me one point or 2 in the CFS scale. So I am glad I persisted, I don't sleep w/o it now.
     
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  6. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    the symptoms you describe seem like ME, so I'm thinking you're right that CPAP isn't likely to cause you to recover. At best you could hope for an improvement.

    The open mouth thing will definitely make the air flow worse. I don't know if a mask that covers your mouth would fix this or not, but it sounds like you've tried a lot of things during the first study.

    I don't blame you for not pursuing it if it's not working and they said it's a mild case.
     
  7. *GG*

    *GG* Senior Member

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    I use a vPAP machine, I think that is what lenster7 is talking about. The air flow varies depending upon the "blockage". I also use an Oxygen concentrator (2 Liters per minute), had my good CFS Dr prescribe it. It did take a while to get used to, and I like a couple of the masks that do not go tightly on my face, although it does seem to come off easier these days, but that could be because I do not need it as much? I fall asleep without it, and sometime sleep without it when I go out of town for a day or 2.

    I also found a good med (anti-depressant) that gets me to sleep and keeps me asleep, I wake up feeling much more refreshed for work. I also made a lot of lifestyle changes when I had a major crash over 3 years ago now. My PEM is much better.

    GG

    This what mine looks like: [​IMG]
     
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  8. Vincent

    Vincent Senior Member

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    You nailed it. The system is very rigid and uncaring, even though the providers might be great human beings. My experience was not totally different from yours. Yes it does strike me as a churn and burn polysomnogram factory, they can rack up more money running more tests. The technology exists for example to have wireless EEG, but I've never seen a sleep study lab that has them, instead you are hooked up to 15 some odd wires making it impossible to sleep.

    Unless you have severe sleep apnea I would look into provent or a dental appliance and save cpap as a total last resort. If you use the same mask design it will put permanent marks on your forehead where the mask braces go, along with the inconvenience of having to lug a machine EVERYWHERE you go.

    One thing I would suggest though, and my ent did this, was to get a trial of cpap to use at home like you mentioned. You can get the machine set at 4, which is the same as no cpap at all, but you'll get accustomed to it. They also have auto machines you can use at home and give yourself a sleep test, then send the machine back and they download the data.
     
  9. perchance dreamer

    perchance dreamer Senior Member

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    I'm happy with the TAP 3 dental device for my mild apnea. I got it through my dentist office.

    I tried Provent, but you need to be able to breathe well through your nose in order for it to work, and mine is often blocked because of allergies.
     

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