The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Experiences with sleep apnea treatment amd ME/CFS

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

  1. perchance dreamer

    perchance dreamer Senior Member

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    @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

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    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

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    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.
     
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  4. TiredBill

    TiredBill Senior Member

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    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
     
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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    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.
     
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  6. TiredBill

    TiredBill Senior Member

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  7. perchance dreamer

    perchance dreamer Senior Member

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    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.
     
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  8. TiredBill

    TiredBill Senior Member

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    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
     
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  9. perchance dreamer

    perchance dreamer Senior Member

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    This is an old thread now, but I just needed to wail and moan a bit, if I may.

    I still have not slept with my autopap, a ResMed Airsense 10 with the Dreamwear Nasal Mask although I've had it a long time. One reason is that I have near constant sinus infections, which I haven't been able to get on top of. They are due to my immune system and having such a dry nose and sinuses.

    The 2nd reason is that when I've practiced with the mask during the day it's so uncomfortable that I know I wouldn't be able to fall asleep with it. I can't stand it more than 15 minutes, and I'm just forcing myself to do that much because I know I need to get used to the whole thing. A large part of my intolerance is that I have fibromyalgia and an extremely sensitive system, so discomfort and pain is my usual mode.

    I also have the P10 Nasal Mask, and it's uncomfortable, too. I don't know if I can bear to have anything touching my cheeks and my face. The Dreamwear mask is very soft and is supposed to be comfortable, especially since the hose can go behind the user, but an hour after using it only 15 minutes, my cheeks are still irritated. I'm using the supplied pads and additional cotton pads to try to make it more comfortable.

    The place where I got the autopap and mask is very good. I guess I'll go back in next week and see if I can find a more comfortable mask. But, as I said earlier, I don't know if I'll be able to tolerate having any kind of strap touching my face and cheeks.

    @CFS_for_19_years, I know you have fibro, too. Did it take you a long time to get used to having straps on your face?

    My apnea is mild, and I've used a dental device for years to control it. However, it does aggravate my TMJ. My husband uses his with no problem, but he didn't have preexisting TMJ like I did.
     
  10. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @perchance dreamer, I've found that the humidifier for the ResMed helps with dry nose and sinuses. I don't think I'd ever be comfortable without one. If you're stuffy, try using a sinus irrigator an hour before bedtime. I know that helped me a lot.
    https://www.amazon.com/Sinus-Rinse-100-Complete-Kit/dp/B000RDZFZ0

    You can occasionally use a nasal spray decongestant, just don't use it every day or you will get rebound congestion:
    https://www.amazon.com/Afrin-Decongestant-Nasal-Original-1-Ounce/dp/B005MSE7LS

    If you have constant sinus infections, that can be a sign of allergies. What worked for me was getting allergy shots and avoiding dairy altogether. By avoiding dairy products some of your stuffiness should go away in about three days. You could be allergic to things you inhale and foods you eat. An allergist could do the proper testing to see what you're allergic to.

    I know what you mean about stuff touching your face. When I was using a traditional nasal mask (triangle) I experimented with stuff to put between my skin and the mask when where it touches the cheeks and I found that pieces of old cotton sheets (not flannel) were the softest and irritated my skin the least. I wonder if a piece of old cotton sheet would help remove some of the irritation of the P10 Nasal Mask. Clean skin (no lotion) is also recommended.

    I haven't tried the Dreamwear mask, so I can't offer any advice for that.

    I found the easiest way to fall asleep and use a CPAP is to lie on my back with the CPAP gear on my chest and relax at least 15 minutes to get my heart rate down. When I feel like I'm getting close to nodding off, I strap the gear to my face. If I'm still awake after I've worn the mask for 30 minutes I take it off and try relaxing again, because by that time the pressure has ramped up to the maximum level and it's hard to fall asleep.

    The first couple of nights you might only be able to wear a mask an hour or two, but you should be able to gradually increase the amount of time you wear it. If you're only able to wear it 4-6 hours, maybe that's all you can do. You'll still get some benefit from that time you're wearing it.

    If all else fails, you can try lying on your side and that will reduce some of the apnea. Switch sides regularly so you don't get sores or joint/muscle pain from lying on just one side.
     
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  11. perchance dreamer

    perchance dreamer Senior Member

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    Thanks, @CFS_for_19_years. I do irrigate my sinuses twice a day and have done that for years. Without sinus rinse, I wouldn't be able to breathe.

    I get such bad rebound congestion with decongestants like Afrin that even one use gives me bad rebound. The relief lasts only a couple of minutes, and then I'm much more congested than before I used the spray. My ENT says she has a couple of other patients who have the same reaction. However, I do use Dymista spray before going to bed. Dymista is a combination of nasal steroid and antihistamine.

    Yes, allergies contribute a lot to my sinus infections, I think. I've been tested and am allergic to mold, Johnson grass, and cedar. Our cedars in Central Texas aren't the beauties that you guys have in the PNW, but a type of juniper. Many of us in Austin moan piteously during cedar season, especially when the wind blows and we see blankets of yellow cedar pollen in the air, but luckily the season should be over in several weeks.

    I did stop dairy a couple of years ago because it started giving me digestive problems, but it hasn't helped slow mucous production at all. I did a delayed reaction food allergy test some years back--which my allergist thinks is bogus, but my integrative practitioners think is useful--and the only 3 in the severe category were peanut butter, lobster, and sage, all easy for me to avoid. I've given up dairy, sugar, gluten, grains, and legumes, so I'd hope I wouldn't have food sensitivities beyond that.

    I am doing prescription allergy desensitizing drops through my allergist. It's a way to avoid the shots, and it's easy to take them at home. They are starting to help, but like with the shots, it can take a long time to become fully effective.

    I've recently started using a device that people at my integrative pharmacy recommend. It's the HailiCare Allergy Reliever and operates with either a pulse or a low-frequency laser. At the pharmacy, they recommend using the laser rather than the pulse. I'm going slow with it since I'm so sensitive and will report if I get some good results.

    https://www.amazon.com/HailiCare-An...991689&sr=1-1&keywords=hailicare+allergy&th=1

    I'll try pieces of an old cotton sheet to cushion the straps on my face. I guess I just have to get desensitized to having straps on my face and slowly get used to it. It's not the nose piece that bothers me, just the face straps.

    I do sleep on my side except when I'm practicing with the autopap during the day. I've always strongly preferred side sleeping. I also sleep with my head elevated since that's supposed to help, too. But even with both those things, I still have mild apnea.

    I sure do envy an old friend of mine. He had apena, which went away when he lost weight. I don't have weight to lose, especially after losing 7 pounds after a bad bout of the flu, and my problem isn't related to weight, anyway.

    I doubt my 14-year-old cat has apnea, but she does occasionally snore. It's the cutest thing!
     
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  12. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hi @perchance dreamer & @CFS_for_19_years @TiredBill - I really appreciate this thread as I'm about to have a home sleep study because my pulmonolgist feels certain I have sleep apnea. All the comments here have been extremely helpful. I've already had an overnight home oxygen test and am currently on oxygen.

    My chronic rhinitis made it difficult for the oxygen to get through the nasal cannula so I began to do some sleuthing. I don't believe my chronic sinus inflammation is food related and I also noticed that my sinus congestion is always worse at night. After doing a ton of reading about rhinitis and dust mites I began to wonder if this could be my problem.

    I had never tried Flonase, though I did have a Dr recommend it once but I was leary of using nasal steroids so I never tried it. I did the following 3 things all on the same day which have almost completely eliminated my nasal congestion:

    1. I'm now a believer in Flonase
    2. I take Mucinex every day.
    3. We did a thorough dust cleaning in the bedroom - even bought a Shark vacuum to get all that extra dust lurking under the bed. Washed ALL the bedding including pillows and threw out all the old pillows that weren't washable and bought new ones. (After all, we ARE the pillow queens and kings right? :)

    THE FIRST NIGHT of doing all this was nothing short of miraculous. I don't know if any one of these things alone would accomplish this, but- I'm feeling pretty convinced that dust mites could be a big part of my problem.

    We had to go out of town for my husband/s work and stayed in a cabin on a ranch. I was still using the Flonase and Mucinex but my nasal congestion started acting up again (though not near as bad). Ranches are pretty dusty!

    I'm hoping the sleep study I do at the end of the month confirms OSA so that I can get a CPAP or APAP too. If it does, I'll be back for more of your sage advice.

    Cheers!
     
  13. TiredBill

    TiredBill Senior Member

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    @perchance dreamer

    I'm aware that there is a small company (home business?) called Pad A Cheek that makes slip-on covers for mask straps for people who are sensitive to straps.

    Sorry if that information is too late to be of help.

    Bill
     
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Found it: http://www.padacheek.com/
     
  15. perchance dreamer

    perchance dreamer Senior Member

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  16. liverock

    liverock Senior Member

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  17. TiredBill

    TiredBill Senior Member

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