1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Anyone feel worse with CPAP/BiPAP?

Discussion in 'Sleep' started by Whit, Aug 3, 2013.

  1. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    Really sick. Hard to type... srry

    Have sevre (?) slp apnea

    been testing a Bipap during day.

    mkes me lighthded, fl suffocating. mks me breath diff. deeper inhale, shallower exhale

    if CFS causes "abnormal" brthing BC our body compensatng for imbalance, is forcing diff brthing dngerous?
    Twice now, I feel HORRIBLE the day after testing Bipap during day for 1hr

    sevre slp apnea def dngrous too though...
     
  2. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    anyone? Every time I test Bipap during day (for 1hr), 3 times now, I feel HORRIBLE the day after

    Using ResMED S9 AutoSet
     
  3. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,879
    Likes:
    960
    US
    I felt worse, but only because of the noise and discomfort. They prevented deeper sleep and made it take longer to fall asleep. Also I was worse when the humidifier chamber and tubing were not cleaned.
     
  4. WillowJ

    WillowJ Senior Member

    Messages:
    3,135
    Likes:
    2,824
    WA, USA
    I am using CPAP, not BiPAP. The first machine I had (loaner) blew in a lot of air even when I wanted to breathe out, and wanted me to breathe faster than I normally breathe. I could hardly ever use it for this reason; I just got exhausted.

    I now have a model which is much more intuitive, and it doesn't blow much while I breathe out. I can breathe at my own rate.There is a setting which can be adjusted on my machine which regulates this. Mine is set at the highest setting (most gentle).

    It does seem to help me stay asleep longer. However it still makes me breathe more deeply and wears me out, so I have to take a break every now and then.

    It works better while I am asleep then when I am awake or semi-awake. I know some people who use theirs while watching TV or whatever, but this would not work for me.

    It's so hard to keep this up!
     
  5. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,879
    Likes:
    960
    US
    Willow's post reminded me of the overnight where they determine what machine and pressure you need. They had me on one machine that felt bad at first. Was this a machine they tested you on?
     
  6. roxie60

    roxie60 Senior Member

    Messages:
    1,728
    Likes:
    539
    Central Illinois, USA
    I actually think it is beneficial but I fight with it and end up ripping it off during sleep. Plau I am sensitive to smells and it seems no matter cleaning hose each day it get s a sour smell and I then dont use the cpap.
     
  7. SickOfSickness

    SickOfSickness Senior Member

    Messages:
    1,879
    Likes:
    960
    US
    If memory serves, I had the opposite of Willow. CPAP felt bad, BiPAP felt good.
     
  8. Xandoff

    Xandoff Michael

    Messages:
    292
    Likes:
    184
    Northern Vermont
    I was started out wrongly with a CPAP machine and then switched to a Bi-Pap machine. I had such a horrible experience with the CPAP machine that by the time I started using the Bi-Pap I ended up not using it for more than a couple of months. I sleep on my side now and wear one of those Breathe right things on my nose. What I would give for one night of real sleep....but hey....I am only dreaming!
     
  9. WillowJ

    WillowJ Senior Member

    Messages:
    3,135
    Likes:
    2,824
    WA, USA
    they did not test me on a machine. they just decided and issued me one. Then for a couple of reasons took it back and issued me another. I like the second one better.

    I have told them the settings are a little off and they are dragging their feet about getting them changed.

    I have never tried a BiPAP.

    roxie60 they should replace the hose every so often for you. also you can clean the washable parts with a 1/2 vinegar 1/2 water soak (15-30 minutes, IIRC). not everyone will tell you this, but you should double-check with your RT and my guess is that they will approve it for your machine as mine did.

    Every time I take off my mask for the day, I turn off the humidity and blow dry air through the tube for a bit, and wipe the mask. It's not good if I forget to turn the humidity back on next night, but I think it improves the hose to dry it out a bit.
     
    roxie60 likes this.
  10. Antares in NYC

    Antares in NYC Senior Member

    Messages:
    170
    Likes:
    226
    USA
    Since about the year 2000, most doctors diagnosed my ME/CFS as "sleep apnea", despite inconsistent sleep studies. No joke, since 2000 I may have had 10 to 15 different sleep studies done at different locations, medical centers, doctors. About 1/3 of those studies showed no sleep apnea. The rest showed a very mild apnea that, according to all the sleep specialists I consulted, "should not cause these extreme sleep disturbances", fatigue, and daytime sleepiness. A couple of sleep tests, way early on, showed a very mild "restless leg" reaction too.

    So, overall, after about a dozen tests, they told me I had an inconclusive very mild apnea that didn't correspond to my extreme symptoms.

    I have tried a number of CPAP machines, only to give up within a few weeks. The use of the CPAP machine made my sleep way worse. It was torture. My most recent test of a CPAP machine was in 2011. My clueless GP was convinced that I just needed a better device, so he got my insurance to approve a very modern, very fancy new model with all the bells and whistles, nasal pillows, you name it.

    Guess the result?

    Within three weeks I had to stop, as it was making my sleep even worse.

    Right now, this fancy cpap machine rests neatly on its original packing box, collecting dust in a closet, alongside the two other models I used in 2008 and 2005.

    PS: One day I will get around to calculate the amount of money and wasted resources that this ME/CFS has caused me. I'm sure I will be horrified.
     
    August59 and Valentijn like this.
  11. perchance dreamer

    perchance dreamer Senior Member

    Messages:
    361
    Likes:
    208
    This is an interesting site about treating apnea:

    http://www.ihatecpap.com/

    I use a TAP 3 dental appliance, and it works really well.
     
  12. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    my chronic fatigue is mainly from sleep disordered breathing and asthma. I woke up one day with a little chest pain on bipap st and was wondering if my settings are too high the bpm is too high, but I think the settings may need to be high to treat central apneas. If I set bpm to 20 then I feel nauseous. I had bad chest pain on cpap once that lasted a day.
     
  13. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    I feel better after taking coq10. I'm still on oxygen and asv, the s9 didn't work for me I kind of hate that machine and my weird pulmonologist put me on bipapst instead of asv
     
  14. alex3619

    alex3619 Senior Member

    Messages:
    7,686
    Likes:
    12,520
    Logan, Queensland, Australia
    Thats what happened with me using CPAP. I am planning on testing BiPAP later this year.
     
  15. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    does anyone have treatments for central apnea? It's really dangerous and damaging if your O2 levels fall to 70%. I'm trying to increase melatonin levels by taking precursors and cofactors to melatonin. It is terrible I demasked last night and feel awful all today and sick and weak and had IBS attacks plus I have 2 resistant infections from exhaustion

    some precursors/cofactors might be-
    sam-E, tryptophan, (or melatonin)
    I'm also trying to increase GABA by taking: GABA, klonopin, theanine, avoiding coffee

    anyone have any good ideas?
     
  16. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    is there a way to modulate the pineal gland so you get more continuous sleep? does tryptophan help? it seems to help my sleep sometimes but today I feel foggy.
    maybe my IBS is a sign of absorption problems
     
  17. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    New thread pls
     
  18. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    I have an asv and lowered my max pressure settings and I feel that I sleep better on that and de-mask less on lower settings
     
  19. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    266
    Likes:
    8
    US
    I'm on BPM 10, Ti 1.5, max IPAP 18cm, epap 4-9cm and it feels much better than the higher settings. I tried this aggressive s9 resmed vpap adapt and I couldn't tolerate it, I had maybe one good night of sleep on it probably because the BPM is stuck at 15
     
  20. Whit

    Whit Senior Member

    Messages:
    253
    Likes:
    232
    Bay Area
    Noone feels worse after using CPAP/BiPAP? Hypervntlatn feeling or wrse CFS?

    Evn 5 min = Hypervntlatn feeling for hrs after.

    Im scared to use it but i need it. :-/
     

See more popular forum discussions.

Share This Page