Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

Experiences with sleep apnea treatment amd ME/CFS

Discussion in 'Sleep' started by kikala, Jun 10, 2017.

  1. perchance dreamer

    perchance dreamer Senior Member

    Messages:
    1,310
    Likes:
    1,854
    @TiredBill, do you have any theories about why you have central apneas? I'll be interested to hear your experiences with the ASV machine.

    My last lab sleep test was about 5 years ago. I had to leave early because I had literally no sleep while hooked up. The place was very comfortable, and the technician was excellent, but being tethered to all those electrodes and having to be so careful about moving with them on just torpedoes my sleep. Can't they just pass you through a pod instead of having to be covered head to toe with electrodes? Maybe I could tolerate it better now.

    I've never had much data from a sleep study, but a previous one showed a few central apneas in addition to the hypopneas. My sleep doctor said a few CAs aren't unusual or anything to worry about, but I would make sure they haven't increased.

    My apnea is mild and seems to be pretty well controlled with a dental device. I've had some of the home tests to verify this.

    The home test that just measures O2 levels and obstructive apnea is very uncomfortable for me, too. Those wrist monitors always hurt. I have tiny wrists, and the monitors are always such big honkers. My sleep is always poor when I do these home tests.

    I do have an autopap and would like to see if sleeping with a mask gets me better sleep than the dental device. However, I've had problems with recurrent sinus infections, so haven't used one through the night.

    My ENT thinks even with the stuffiness and congestion from the infections that I might still tolerate the machine. She thinks I would really benefit from the moisture since part of my problem is that my sinuses dry out so much that I have to use nose spray about every 30 minutes during the day. You guys have inspired me, so I'll try it again.
     
  2. TiredBill

    TiredBill Senior Member

    Messages:
    149
    Likes:
    1,033
    Los Angeles
    I have no idea why I'm having Centrals. I do understand that they sometimes creep up due to using APAP/CPAP.

    When I started (and was having a few) it was no big deal. I had a net benefit. But things started reversing course. Those I have spoken with who've treated complex apnea or mixed apnea with ASV have loved it. It often gets AHIs down to near-0.

    With your APAP do you use the built-in humidifier? Maybe a heated hose?

    Do you have the free Sleepyhead software? With data people on the support forum, "Apnea Boards," can help you dial in the settings on your APAP machine. Having nightly data allows one to see exactly what is going on in the comfort of one's home.

    Bill
     
  3. perchance dreamer

    perchance dreamer Senior Member

    Messages:
    1,310
    Likes:
    1,854
    Yes, I have used the built-in humidifier with my APAP when I've tried it during the day to get used to it. I don't know if the hose is heated. I have the Resmed Airsense 10 APAP.

    I'll look into Sleepyhead. I can't tell if it requires a smartphone or not. I'm a dinosaur who still has a dumb phone. I really should have my own room at the Natural History Museum.
     
    merylg and Izola like this.
  4. TiredBill

    TiredBill Senior Member

    Messages:
    149
    Likes:
    1,033
    Los Angeles
    I have the same APAP device (Resmed Airsense 10). It is a very good machine.

    By pressing the round knob and the "space bar" towards the bottom front of the machine at the same time you can enter the "clinical mode" that allows you to change the setting for many things. It includes pressure adjustments, but also humidity and temperature.

    A problem that can happen with warm-moist air from the humidifier (which people with sinus issues often like) meeting a cold tube is that one can get condensation in the tube and mask. This condensation is called "rain out" by hoseheads. A heated tube eliminates rain out. Some people use a fleece cover on the hose.

    Sleepyhead runs on computers (Mac/PC/Linux*) not on smartphones. On the left-hand side of the ResMed device, there is a cover for a slot opening that should have an SD card inside. Press on the SD card to remove. If not, you need a 1-2 gig SD card. You also need a USB card reader (or built-in card reader). Then you upload data from the SD card into the computer (where you view it).

    At the forum I mentioned, there are experts who like helping people who can upload charts. It is worth doing IMO.

    If you need any help let me know.

    Bill
     
    merylg likes this.
  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

    Messages:
    2,016
    Likes:
    5,109
    USA
    I get a lot of help with dry sinuses by using a humidifier that comes with the CPAP (APAP), a lot more than using nose spray during the day.

    @perchance dreamer, I think you're allowed to get replacements for accessories on a set schedule, so the next time you're due for a hose replacement you can ask your doctor's office to prescribe a heated hose. My doctor's office recommends them now and I don't think there is a big difference in price.

    There are a couple of ways to reduce "rain out":
    Lower the setting on the humidifier.
    Keep the room where you are sleeping warm.
    My favorite: Put the hose under the covers to keep it warm.
     
    merylg and TiredBill like this.
  6. TiredBill

    TiredBill Senior Member

    Messages:
    149
    Likes:
    1,033
    Los Angeles
    Hanna likes this.
  7. perchance dreamer

    perchance dreamer Senior Member

    Messages:
    1,310
    Likes:
    1,854
    Well, I've cleaned my autopap equipment and will start trying to get used to it again. I have the DreamWear Nasal Mask, and I suppose it's about as comfortable as nasal masks get. It's all very soft, and the hose connection is on top of the head and rotates 360 degrees so you can position the hose easily.

    It's also available with either nasal pillows or a nasal cushion that spans both nostrils.

    I had tried it out during the day before I got so discouraged by near-constant sinus infections. This mask is supposed to be comfortable for side sleeping, but it still bothered me.

    https://www.usa.philips.com/healthcare/product/HCNOCTN452/dreamwear-under-the-nose-nasal-mask

    @CFS_for_19_years, I remember you saying on another thread that you find it impossible to side sleep with any mask. I'll try it some more, but no matter how soft the headgear or what type of special pillow you have, when you sleep on your side your cheek is still pressing into the gear. But I think I could get used to back sleeping if I need to.

    It's good to know that breathing humidified air helps your sinuses more than spraying your nose all day. I lug those big orange cans of Simply Saline everywhere.

    I have the humidifier set on 5. What do you guys set your humidifier to? Maybe the humidifier settings are different on different pap machines. Mine's the ResMed Airsense 10.
     
    CFS_for_19_years likes this.
  8. TiredBill

    TiredBill Senior Member

    Messages:
    149
    Likes:
    1,033
    Los Angeles
    Mask choices are so personal that it is difficult to recommend one. A favorite of many is the very minimalistic P10 pillows from ResMed. I've also done well with the Philips Wisp nasal mask and ResMeds N20.

    Back sleeping usually drives up apneas, so probably not the best solution.

    Until last week I was using the ResMed AutoSence 10 Autoset. It is a very fine APAP machine, I set my humidifier setting to 3, but don't have sinus issues. My new ResMed ASV Auto has been in "auto" mode on the humidifier and seems to use more water than the APAP on 3. I'm about dry by the morning after putting in a full tank.

    I'll keep putting in plugs for downloading Sleepyhead (free) so one can download data to a computer. It is a valuable tool to see what is going on and allows one to maximize therapy. Had I not monitored mine I'd never have known I was having Centrals that an APAP machine can't address (and can even make worse).

    Bill
     

See more popular forum discussions.

Share This Page