FIRST night with CPAP machine

[WindyCityEsq]

My very first night on using my CPAP machine and it did NOT go well.

For starters, I was still wide awake at the end of my first ramp cycle (set at 20 min) so I had to shut the whole machine off to re-start my ramp. Tried a second ramp. Same thing- wide awake at the end. Tried a third ramp and increased ramp time to 40 min. That time worked. Sort of.

Sort of bc I’m pretty sure I drifted off to sleep. But not so great because I kept waking up several times in the night with mask LEAKS ALL OVER THE PLACE. (Yes, I tested my seal before I went to bed, and I got that happy face screen that says, “no leaks” – so I’m not sure what the problem was). The sheer noise of the mask leak woke me up. Tried tightening the straps. Tried adjusting the mask itself. Tried adjusting the strap’s position around my head. Turned off the whole dang machine so I could take off my mask, to re-adjust every aspect of the fit (so for those of you counting, that’s 4 shut offs and re-starts so far). It was awful.

To make matters worse, my CPAP level is so high (19) that I kept waking up from it. Waking up bc the intense pressure is extremely uncomfortable and very loud. It’s awful. It’s super hard for me to exhale (and that’s after the DME rep changed my machine to a setting that was makes exhaling easier) so it feels like I’m suffocating.

My two sleep studies both confirmed I’m not a mouth breather. But my pressure level is so high that that one mask with the two little things that fit at the edge of your nostrils are not recommended for me. They said that would be too much intense pressure in a small concentrated area- that I would need a nasal mask so that the pressure diffuses a little. Despite the 2 studies confirming that I'm not a mouth-breather, I distinctly remember two times I woke up last night with an open mouth. I’m not sure if that’s a result of the intense pressure (like my mouth felt compelled to open, or something?). But I woke up to a mouth that felt like it was being vacuumed by a giant Hoover and it was as dry as the Sahara. I just reposition myself and my mask, closed my mouth, and focused on breathing through my nose. But the downside was by then, I was already at level 19, and I just can’t fall asleep at that level, so I had to shut down my machine and re-ramp yet again!

I downloaded Sleepyhead this morning. Went to bed at 11pm and woke up at 5am (6 hours). It says I had 95% mask leak and only slept for 22 min.
I was so excited for this machine. Felt like it was going to solve so many problems. After last night’s experience I am feeling SO defeated and frustrated and more tired than ever.

What am I doing wrong?!

FYI, for the last 4.5 hours, I’ve been battling a constant runny nose with a tickle sensation (sort of like that tingly sensation you get the second before you sneeze). I think it’s from the humidifier, bc I’m not sick, and the expectoration is very runny and clear. I set my humidifier at 82. The DME rep said the default is 80, so I increased it a few points bc of the bone dry, freezing cold weather we’ve been having lately, plus I get frequent winter nose bleeds. Does anyone else experience this? Does it go away eventually? Should I decrease my humidifier setting?

Also, I have no idea how to post my Sleepyhead data on here for y’all to look at. Can someone link me to an explanation of how I can share that info with you?

Night 1 w/CPAP vs. Christina. Night 1 wins. 

[sleeplessinaz]

Wow what a crazy night! I would suggest that you use your auto set and do a range of pressures instead of blasting you with such high pressure. I turn my ramp OFF. I think a range of something like 10 to 19? Keep the humidifier on but maybe turn it down a bit? I have mine on 4.5 but I live in the desert.

Hope this helps,

[SleepDisturbed]

First, have patience. Most of us take a while to sort out all the variables when we get started. (And continue to tweak!)

Some humble suggestions:

Shorten your ramp time some. Seems like that might be too long. Many of us don't use that at all.

Fit your mask at full pressure lying down in bed. Usually works much better that way.

Try wearing the mask for an hour or two in the day without trying to sleep, just read or watch TV. Sometimes this helps adjust.

Try reducing the humidity setting, maybe 78 to start?

See if you get your doc to set you up with a range of pressure, maybe 9 to 15 to start, then see what happens. Jumping in at a constant 19 seems pretty abrupt.

Get your software set up, and running. That will be a huge help.

Others will have additional insight, but hang in there! Everything you related can be adjusted, just may take a little while.

[WindyCityEsq]

I called my doctor (a neuro) re: using the auto-set from a range of 10-19. He said no. He had a harsh reaction to that suggestion. He said he is anti-auto machine for most people. He says that if I set the auto to a range of 10-19, that the highest it will ever get to is like 15-16... that it's supposed to get higher, but in his experience, it never actually does. He says it wont' ever get to 19, which is what I need to get rid of my apneas in my REM cycle.

[BeadyEl]

All the empathy in the world, @WindyCityEsq, my experience has been so very similar.

I've been diagnosed with sleep apnea after complaining of excessive daytime tiredness. My apnea virtually never actually woke me up all the way. Subjectively, it seemed that I slept quite well - except that I was still really tired when I woke up.

I've had 3 sleep studies, the latter 2 with a CPAP. The result of these was a recommendation of a CPAP set to 17. Like you, I was told that a nasal mask would be adequate, that the studies showed that I did not breathe though my mouth. I braved an awful (literal) storm to drive out and finally get my machine this past Wednesday. I SO wanted it to work well...

Talk about disappointment. Now, instead of sleeping easily (but with apnea) I can't sleep at all. The sleep lab experience was NOTHING like this.

The machine ramps to 17 in 30 minutes (max setting) and my EYES feel like they're going to pop out. The machine BLOWS my mouth open any time I get close to drifting off. My stomach was soon stretched tight with swallowed air. The notion of sleeping with that crazy thing strapped on seems laughable.

I hope that very soon I find a way to fix this; I know from past experience with insomnia (not for some time, thankfully) that it's not an option to "just accept" that there'll be weeks or longer when I'll get very little sleep, all in the name of bravely adjusting to this thing.

It may sound melodramatic, but that's what sleep loss does to me. I'd learned to mostly tolerate my previous, apnea-caused daytime tiredness; but the emotional state caused by (in this case, CPAP-INDUCED) sleeplessness is pure hell. If the road to CPAP adjustment is going to be like this, I won't make it.

[jencat824]

Sorry you are having such a rough time getting started. I understand your frustration, I used to be set at a 19cm straight CPAP too. Many people here, including me have used nasal pillows at 19, but just starting out, I think your DME made a good suggestion for you to use a nasal mask for now. I have had suggestions from several people here when I first joined the forum that maybe I needed BiPAP. For my situation, things changed, so I didn't go that route, but perhaps you might ask your neuro if that could be done for you. Your problems with exhale seem to warrant help with that, and I'm not BiPAP knowledgeable, so hopefully a BiPAP user will jump in here, but as I understand it the BiPAP will be set at an exhale pressure to assist you with breathing in & out at that high pressure.

I have been on CPAP for 14 years, just went to Auto last March, but my numbers are great on the Auto. My pressure does get up to 20 sometimes, but usually rides around 15. I still use my straight CPAP as a travel machine & sleeping with straight 19 is a little different than my auto. I point this out because the straight pressure is more of a 'blast' than the auto. I was never able to use the ramp, just adjusted myself in the beginning to straight 19 & that was really all I knew until I found this great forum. I would suggest if you keep the straight CPAP you work on getting another mask & try it on with pressure, laying down. To do that you usually have to take it home and try with your machine, most DME's think you are kidding when you ask to try it on that way. They obviously haven't worn a CPAP. Most DME's have a 30 day return policy, so that allows you several nights with a mask, then switch if things aren't working. Some DME's will only allow 3 or 4 'switches' so ask about their policy to be sure you know their parameters.

Most of all - hang in there, it can be tough starting out, you can see all the newbie posts here with their struggles. The real key is getting the right mask, and in some cases the right machine too. I hope a BiPAPer will jump in with some advice for you.

Jen

[Pugsy]

He says that if I set the auto to a range of 10-19, that the highest it will ever get to is like 15-16... that it's supposed to get higher, but in his experience, it never actually does. He says it wont' ever get to 19, which is what I need to get rid of my apneas in my REM cycle.

He's wrong..people max out the maximum setting all the time...it will go to 19 if it thinks it needs to go there in auto mode.
But you won't be able to change his mind..but he is wrong. We have lots of examples of maxed out maximums.

How to post images of reports explained in this thread
viewtopic.php?f=1&t=81072&p=737779#p737779

Are you using EPR? If so at what setting? If not, try it.

Anyone mention that maybe you would do better with a bilevel pressure machine? EPR helps a little but a bilevel machine would be even better help..especially with your needed pressure.

[Pugsy]

Oh...I use a nasal pillow mask quite successfully and see pressures of 20 every night.
Lots of people use higher pressures (even exceeding 20 cm) successfully using nasal pillow mask.

[WindyCityEsq]

Pugsy, thanks for replying. I was sort of hoping you would. I feel so lost & frustrated. I REALLY want this to work.

So if my dr is wrong about the apap... and if I decide to switch to apap on my own, how do I know what range to set it at? Do I just take a wild guess and arbitrarily decide my own range? I don't have my titration study (nor would I know how to read it), so all I know is that my cpap level is at 19.

By the way, I know the DME supplier is not a dr or anything, but when I told him about dr's opinions on apap, he said he disagreed w/him too. I was initially thinking my DME was a bad guy who would try to screw me over, but he made sure I got top of the line everything, sent me home w/2 masks, and told me that I can exchange masks as often as I need to during the first 45 days until I find the right one- he will even deliver the masks to my home. He was also really informative.

My dr mentioned biPap as something appropriate for people with even higher pressures than me, like >25 or something? (am I remembering right?) But he said I will do well w/a cpap. I don't know what to think... if I should just keep at it and maybe it will get easier? Or if I should ask him for a bipap?

As for the nasal pillows... that may be. I don't know, I haven't tried them. But is that something you started right off the bat? Bc I think the DME was concerned that it would be too much for me (too much pressure in a small concentrated area) in part bc I'm a newbie.

My titration study was NOTHING like this. I slept like a baby! The sleep tech and my dr both said I had excellent sleep w/good REM that night. What the heck happened between that experience and when I brought home baby? lol!

[WindyCityEsq]

I dont' know what EPR is... I'm trying to look it up now.

[newpapper]

What was the mask that was used on your titration study that worked so well?

[WindyCityEsq]

@ Pugsy: My EPR is set at 3

@ newpapper: SAME exact mask! The F&P Eson nasal mask That's why the DME got it for me. Bc my titration study was awesome w/low leakage and I slept like a baby w/o disturbances.

[squid13]

Windy here is a good video to watch to tell you about your S9 http://www.cpaplibrary.com/machines.html

[chunkyfrog]

19 cm is awfully high for the 3 cm maximum exhalation relief (EPR)
If you are having this much difficulty, keep after your doctor to switch you up to an auto bilevel machine.
Most insurance requires you try cpap or apap before they will let you NEAR an advanced machine.

[djhall]

Welcome Christina,

You have my sympathy with the a rough night and the tough start. I'm roughly nine months in myself and running almost exactly the same pressure. It amazes me that this is how the professional community introduces people with high pressure needs to PAP therapy. Try not to get too discouraged. I was there myself 9 months ago... it DOES get better with persistence and determination!

In my experience, mask issues become harder to control as the pressure gets higher. I have six masks in my drawer that all work fine for me at 10cm, but here is only one I can still use at 20cm pressure without having leaks or a bloody nose bridge. When I was starting and using auto pressure control with those masks I would fall asleep at a lower pressure and wake up at higher pressures feeling like a hurricane had erupted in my mask and leaks were usually shooting out the sides of my nose and straight into my eyes. I eventually figured out that I had to fit and test my mask at the highest pressure in my range instead of the lower starting pressure. Have you been testing and adjusting your mask at the 19cm pressure or at the lower ramp pressure?

You don't specify your equipment, but you say CPAP with a pressure of 19. Most CPAP machines max out at 20. For pressures above 20 you go to a BiLevel machine with a higher inhale pressure than exhale pressure which assists breathing and is what I use at your pressure level. With a BiPAP, when you start to inhale the machine switches to the higher inhale pressure and the higher pressure air in the mask wants to go in with the breath to the lower pressure lungs. When you stop inhaling the machine switches back to the lower exhale pressure and the higher pressure air in your lungs now wants to go out to the lower pressure mask. Increasing or decreasing the pressure difference between inhale and exhale adjusts the effect. Too little and you find it hard to exhale just like with CPAP. Too much and you feel like the machine is trying to breathe for you and push the air in and out. When adjusted well the machine responds naturally to you and you breathe in and out with little effort despite the high overall pressures.

According to the Clinical Guidelines for the Manual Titration of Positive Airway Pressure in Patients with Obstructive Sleep Apnea published by the Journal of Clinical Sleep Medicine, "If the patient is uncomfortable or intolerant of high pressures on CPAP, the patient may be tried on BPAP. If there are continued obstructive respiratory events at 15 cm H2O of CPAP during the titration study, the patient may be switched to BPAP." Given your reference to a green smiley face for mask fit, I'm guessing your doctor prescribed you a ResMed machine. The ResMed Sleep Lab Titration Guide says, "Consider trial of bilevel if obstructive events persist at a pressure of 15 cm H2O." Your prescribed pressure of 19 implies you were still having events at 15 and your post indicates you are intolerant and/or uncomfortable of high pressures on CPAP. I would suggest you tell your doctor you are having difficulty breathing at that pressure on CPAP, raise the industry standard clinical guidelines that recommend switching patients to BiPAP therapy under those conditions, and see if they have a good explanation other than the increased cost of BiPAP machines for putting you on a CPAP instead.