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CPAP

Need to know how to make this work or at least get more comfortable using CPAP

post lumbar surgery and post opiate wean and post partial respiratory failure/ hospitalization - for the last 2 1/2 years - I have dealt with terrible lethargy, overall entire body muscle pain and shortness of breath all supposedly caused by ongoing  medications, allergies, asthma and sleep apnea  One by one I wean off that med or add that allergy medicine or add this inhaler or do this nebulizer...(it’s exhausting trying to figure out what’s causing exhaustion).  I also have hypertension that is out of control  and yeah, like most, I’m super COVID anxious/stress  

One thing was the sleep study, did two and started on CPAP machine nightly about two months ago. I’m a mouth breather so the full mask was the only one that worked for me  

Night one, I hate it, I’m claustrophobic so it’s tough to get used to. I find myself waking up with the mask on the floor, obviously I’ve ripped it off.  That was in the first couple weeks.  I started adding CBG and a benzo and that helps me in sleeping 4 nights out of 7 through most of the night with the mask on. I added mindfulness meditation as I fall asleep and dumped 1/2 the Xanax - and after two months my SA doc said I’m doing great.  But I still hate it.  My wife LOVES it  I don’t snore no more...

I get dry nose/mouth easily so I raise humidity and nearly drowned myself.  

Bottom line after two months I don’t feel one lick better, no more energy, no less drowsiness- I feel exactly the same and when I’ve struggled through the night with the mask or inability to fall asleep on occasion I feel worse than without I didn’t use a couple nights to see, and the only downside was snoring  so for my wife’s sake I’m committed to this long term  I thought blood pressure would improve with consistent use   Yesterday I was 175/115 (it went down when I stopped “doom scrolling”)

Any tips on how to get used to this darn CPAP or make it more tolerable     ?

Thank you for reading. 

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Comments

  • I used to use cpap and had to be fitted several times for face mask. Nasal but they have different settings on your cpap that may need adjusting only by another overnight sleep study with cpap or to try another cpap machine. 

    It could be on too high or too low.

    I was offered one that gave me better sleep than the one I purchased. I think they should offer you a free trial of another cpap machine or and mask.

    I lost a lot of weight and quit smoking and don’t need one anymore but do call your cpap provider and respiratory  dr. Is what I would do. 

    It brings back awful memories of not being able to breath and ripping the mask off. 

    Call Cpap provider. Usually an RT or RN should help. They should be open? Charry

  • I have a follow up in 2 weeks.   The dr remotely changed my settings from ramp up to x (11 I think) to fluctuate and I immediate had him set it back.  I too have a weight issue and am losing weight to see if that helps and maybe I won’t need it anymore when I get back to optimal weight.  

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  • I've had a CPAP for over 20 years. I started with a nasal mask. A couple of years ago I switched to nasal pillows... much better.

    They make a neoprene strap that goes under your chin, if you're a mouth breather, so you can use something other than that huge mask. I've sorta trained myself to nose breathe only. Except when my cat walks on my CPAP and shuts it off. I wake up immediately. They also make heated tubing, or a heated sleeve for your tubing. It enables you to lower the heat setting on your CPAP so you don't drown, but you get nice warm moist air. 

    I'm trying to think back to when I first got mine, I would take it off in my sleep a lot. I did not have an epiphany like some people do, it took weeks for me to feel the benefit. I have really bad sleep apnea. 120 events an hour my last sleep study.

    I totally agree with Charry, too. You might be able to try some different headgear.

    Same here with weight, although I've lost over 40 lbs since the beginning of 2020 or thereabouts. I don't know if I snore because I don't even lie down to watch tv without my CPAP. I certainly feel that CPAP has changed my life. I still need to sleep a lot but it's restful sleep.

     Mike

  • Jerome001Jerome001 Cocoa Beach, FloridaPosts: 326

    I've been sleeping with a BIPAP for 1o years and it took a while to become used to sleeping with it. Trying different masks until you find the one that works best also takes a while. There are also things you can use for dry mouth - ask your dentist, sleep doctor, or pharmacist for suggestions as these are typically over the counter items. Using the BIPAP has made a significant difference for me in many ways. It takes self discipline and you will have to make yourself stick with it but you will be better off long-term. As chronic pain sufferers getting decent sleep can really help with managing our pain. Hang in there! Jerome

  • Joel1QJoel1Q Posts: 377
    edited 06/28/2020 - 11:31 PM

    Thanks Mike and Jerome for your help on making it through this.  I am committed as so many of my friends have told me they benefit from using CPAP. 

    I did my sleep study with a regular mask, full over the nose...was delivered a mask that actually has a soft rubber lining that fits against the bottom of my nostrils and over the rest of my mouth, it snaps into a hard plastic mouthpiece- I change that soft piece monthly and the entire thing quarterly...but it’s soft against my skin/beard and should be better than a full hard mask, but so far it’s mixed. Resmed I think is the machine brand.  I am trying to train myself to nose breath so I can try the pigs nose. I do need to stick with it, and so far this weekend have been at nearly 100 on my nightly score.  I don’t think I’m a bipap candidate. My events per hour was supposedly 7 during my study , but is usually below .9 each hour 4/5th of the time , so I am hopeful weight loss will ultimately be my out. 

    I’m just trying to measure the effectiveness and I start with how do I feel when I wake up vs hours slept and CPAP used during sleep ...and if my core issues get better or worse.  Not precise but I am committed ...Joel 

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  • charryccharry Posts: 191
    edited 07/01/2020 - 8:54 PM

    What happened was I was a smoker and I quit using champix and tried to use the cpap but the smell of smoke in the machine made me sick. I used different tubing. anyways I threw it away but of course these days you can bring your machine in for a scrubbing to the cpap place where you bought it. 

    I had to to get a small travel pillow between the legs and pillow behind the back to keep me on the side so I wouldn’t roll back and snore and pull the mask off. I swear I tried 5 different nasal pillows and mouth masks. 

    I used A med to help me lose weight quickly as blood pressure is an issue for me as well. I was supposed to go for a 2 night sleep study again to see if I still have apnea at times as one night is sometimes not enough to get the help with cpap. But now is not the time as it’s done at the hospital and wait till things get better.

    High blood pressure and fatigue and snoring is why I needed the cpap.

    Well hope it works out for you  Charry


  • Charry high blood pressure fatigue and snoring are my middle names, and over weight since spinal surgery is my last name. It all kind of goes together.  I was lucky enough to quit smoking cold turkey on my third attempt nearly 20 years ago. I’m down 16lbs pretty much on diet and minimal cardio exercise since I can’t walk well and no more than maybe a mile at a time.  I’ll stick with the CPAP tho, as today was the first day I felt rested in a long time.  It didn’t last all day, but at least I wasn’t ready for bed after eating breakfast.  

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