Who else has a really high max pressure setting?

[trish6hundred]

Hi Ellen1159,
You are very fortunate that the DME left a providers manual with your machine, such a treasure is that.
I know you are having a rough time of it but, try to use your machine every time you lay down, for naps or for night time. I tried to get my mom to use hers even when she took naps and I never could convense her that she really needed to do that. To be fair to her though, she had a brick, (a respironics DS100S,) and I tried her machine and it was like riding a bucking horse because the technology wasn't as good as it is now on these newer machines.
Good luck and keep on trying.

[PaulaO2]

Sit up with it on during the day, to get used to everything. Wear it while watching TV or reading.

[ellen1159]

Great advice. I am going to start using it more during waking hours and every time I lie down for a rest. That's the only way I'm going to get used to these pummeling pressures and the mask and headgear. My quality of life stinks right now because I am obsessed with the sense of failure to be able to use this therapy successfully. I read a quote once, think it was from Eleanor Roosevelt, that went something like: "the thing you fear the most is what you must do." I'm usually able to overcome my fears but this time I'm overwhelmed. I guess it takes more time than I imagined.

[martinsr00]

I've only been diagnosed a couple of months like you, Ellen. Also have high pressure (20/25 recommended from sleep study).

I don't know if this will help, but I had a similar reaction to yours during the sleep study and for the first night trying my machine.

The first night at home with my machine, for several hours, the machine made a lot of noise while I tried to "breathe normally" into this high pressure. It was as if the machine didn't know what to do. I was sure expending a lot of effort in the process. I kept thinking to myself "what does this @#*#*! machine want? After awhile, decided to try something different -- kind of like diving off the high-dive into the swimming pool for the first time. I simply did nothing and let the machine fill my lungs to the limit. It was weird -- kind of like taking a very deep breath on a cool morning. Hadn't done anything quite like that in years (such a deep breath). Then I started to breath out (since I couldn't breath in any more). Since I had a Bipap machine, as soon as the machine sensed an exhalation effort, it dropped the pressure lower. Since my lungs were full up with higher pressure air, exhalation into the low pressure exhalation was effortless. The machine started to behave quietly and rhythmically.

I suspect that with a "plain vanilla" CPAP machine with the "flex" turned on would do something similar -- make exhalation easier.

I Don't use the ramp feature. On startup, just let the machine fill up the lungs. A couple or three breaths and all is well.

My experience is that we respond to differences in air pressure -- not so much the absolute pressure itself. So, a lung filled with 20 cm of water air pressure, will empty if the surrounding pressure is 15 -- just like letting the cork out of a champagne bottle. Simply let the air go where it wants to anyway.

Hope this helps.

[ellen1159]

I've only been diagnosed a couple of months like you, Ellen. Also have high pressure (20/25 recommended from sleep study).

I don't know if this will help, but I had a similar reaction to yours during the sleep study and for the first night trying my machine.

The first night at home with my machine, for several hours, the machine made a lot of noise while I tried to "breathe normally" into this high pressure. It was as if the machine didn't know what to do. I was sure expending a lot of effort in the process. I kept thinking to myself "what does this @#*#*! machine want? After awhile, decided to try something different -- kind of like diving off the high-dive into the swimming pool for the first time. I simply did nothing and let the machine fill my lungs to the limit. It was weird -- kind of like taking a very deep breath on a cool morning. Hadn't done anything quite like that in years (such a deep breath). Then I started to breath out (since I couldn't breath in any more). Since I had a Bipap machine, as soon as the machine sensed an exhalation effort, it dropped the pressure lower. Since my lungs were full up with higher pressure air, exhalation into the low pressure exhalation was effortless. The machine started to behave quietly and rhythmically.

I suspect that with a "plain vanilla" CPAP machine with the "flex" turned on would do something similar -- make exhalation easier.

I Don't use the ramp feature. On startup, just let the machine fill up the lungs. A couple or three breaths and all is well.

My experience is that we respond to differences in air pressure -- not so much the absolute pressure itself. So, a lung filled with 20 cm of water air pressure, will empty if the surrounding pressure is 15 -- just like letting the cork out of a champagne bottle. Simply let the air go where it wants to anyway.

Hope this helps.

You know, I had the tech adjust the "C-flex" on my machine to make exhalation easier last week, and it helped. Today I attempted a nap lying down in my bed, on my right side (best sleeping position). For the first time, the headgear didn't bother me and I decided not to worry about a little bit of leakage near the eyes (so hard to get allt he straps just right, especially when you go from sitting up to lying down. Had my pillow wedged under my chin to add additional support to the chinstrap. I was almost able to drift off, except my nose was a bit too congested and I had to fight to exhale. I suppose I could have put on the spare FFM I have but I knew my mouth would fill with air and I'd have a hard time falling asleep.

I have seasonal allergies and my sleep doc had suggested that I do my Nasonex spray twice a day and take Allegra twice day (double the OTC dosage). That really helped clear my nasal passages. I am going back to the twice a day allergy meds. I felt that if I could have breathed through my nose better, I could have relaxed and fallen asleep.

I'm going to check and see if my C-flex is set to the best number for me. I'll also try your advice and let the machine show me how to breathe and see if that helps.

[RonWessels]

One of the nice things about CPAP therapy is that you are breathing filtered air. So dust, pollen and other allergens should be filtered out of your air as you sleep.

Are you using your humidifier? I find that using my humidifier helps keep my nasal passages clear during the night, and even helps clear them up when I first put on my mask. Unfortunately for me, I seem to be sensitive to the "damp stuffy" feeling of humidified air against my nose. I much preferred the feeling of cool air as I inhaled. I've been working on it, and seem to be at the stage where now I can tolerate a moderate humidification setting that seems to be enough to keep my nasal passages clear for the entire evening. It's still irritating as I am trying to fall asleep, but I seem to be able to ignore the irritation, at least based on my last week of sleep.

Going back to your "sense of failure" for a moment, let me tell you what happened to me. Firstly, my sleep apnea had progressed to the point where it was seriously impacting my waking hours. I would regularly fall asleep at my desk at work in the afternoon, and I was often down right dangerous when driving. My alternative to CPAP therapy was slitting my wrists!

As I mentioned, I was sensitive to the warm air on the outside of my nose. When I was getting my first mask, I tried various nasal masks (I didn't like how nasal pillows felt, particularly at my pressure), and found that if I took a large size rather than the medium size that would be my "correct" size, that feeling of stuffiness was decreased. Unfortunately, because the mask was theoretically too large for my face, the fit was never good, and I was forever fighting with leaks. For the first week, I was constantly adjusting and tightening the straps. Every time, they felt fine when I tried the mask on while I was awake. Finally one morning, instead of just tightening the straps (again), I re-jigged all the straps so they were evenly tightened. In doing so, I ended up tightening them even more. It still felt fine when I tried it on while awake, but that night, I was simply unable to tolerate wearing the mask while trying to fall asleep. I would try for a few minutes, then have to rip the mask off again.

Not wanting to go down the slippery slope of not using my CPAP "just this once", I went downstairs and watched some TV to try to get more sleepy. This went on for the entire evening. I ended up getting no (zero) sleep that night. The next night, even though I was practically dead tired from lack of sleep, the same thing happened. At around 4AM, I went downstairs and tried to catch at least some sleep on the couch, propped up in a sitting position to try to reduce my apneas. That got me about 2 hours of very poor sleep.

This was probably the most depressed I've ever been. I had successfully used the CPAP for a week, and now I was finding myself intolerant of it. First thing in the morning, I arranged a meeting with the folks that provided my machine & mask to see if they had any useful advice and/or therapy options I could try, since stopping CPAP therapy was not an option. Sadly, the first opportunity was the day after.

I started researching on the Internet to see if there was anything I could find. [ That was my first introduction to this forum ]. And I found a couple of posts that warned against over-tightening the straps of your CPAP mask. I checked the manual for my mask, and it also had a warning against over-tightening. Then I remembered the re-adjustment I made that one morning. I went back and loosened the straps as much as I could while keeping the leaks less than extreme. And I managed 4 hours of sleep from 8am to noon. And the next night, I managed an entire nights sleep.

At my appointment, I traded in my current mask and got one that properly fit me, and I have been using that mask ever since. Since then, I had a couple of nights of poor sleep for various reasons, such as nasal stuffiness and what I am sure is anxiety from my remembered experiences, but seem to be over that now (knock wood!!).

So you're not the only one that has troubles adjusting to CPAP therapy. I daresay most everyone here has some sort of similar story. Except, of course, for those freaks of nature that post how they took to the mask right away.

[spdklls99]

I would much prefer refrigerated cold air to breath at night myself (if only ;p)..

now after 3 years I just now can tolerate a humidifier setting of 1...before now I would put water in it but the leave the heat off...
I would always wake up feeling like I was being smothered/suffocating-rebreathing exhaled air on a heat setting of 3 or higher....which is what my DME recommended I put the humidifier setting on.

[ellen1159]

Resolved to try to go to bed with the mask on last night. I had adjusted the ramp to start at 11.5 for 30 minutes. I was just finding a relatively comfortable position on my side where the headgear didn't bother me too much, the leaks were minimal around the eyes, and I had my chinstrap on and pillows just underneath to reinforce keeping my mouth closed. I notice some tension in my jaw and tongue because I'm not used to keeping my mouth closed in my sleep. Was getting close to drifting off when the high pressures kicked in, and even having my humidifier set to 4 (5 was just too warm and stuffy inside that small Wisp mask) couldn't compensate for the scirocco winds assailing my upper palate and throat.. Within minutes my throat was dry and I was choking. Tried a couple of sips of water but that didn't do it.

I have allergies and I'm taking Allegra twice a day and using my Nasonex spray twice daily per the sleep doc's suggestion as a way of combatting the nasal congestion. The meds work well, but I'm thinking that the back of my throat and my upper palate may be irritated from the post nasal drip (wondering if allergy meds also dry you out?).

Probably a question for an ENT. Going to try the Quattro FFM today to see if that helps. I didn't like it because of the way my mouth would fill up with air (I know it's for mouth breathers and if you have allergies.) Maybe the nasal mask is concentrating the air flow so hard on my tissues that they are drying out and uncomfortable.

I freaking hate this machine. The only good thing about my angst is that for the past couple of days I've been too wound up to eat between meals, and I've lost another 2 lbs. (total 14 lbs. lost over past 5 weeks) Yesterday my total caloric consumption was just below 1200. That's never happened in my life.