FIRST night with CPAP machine

@djhall - I have an ResMed Autoset S9 - and as nearly as I can tell, there is no way for me to reduce the pressure.

If there was, I'd have done it in a heartbeat.

I'm really kind of bothered by your attitude - Cpap isn't a pop-a-pill and you'll feel great in the a.m. It's a system, with variables and variable results that you need to use for the foreseeable future so you don't end up with either cardiac problems or a stroke, not to mention possible diabetes and other lovely conditions that are a lot more trouble than Cpap to deal with.

Lower your humidity by a fair amount for a few nights and see what happens. You don't need someone here to tell you to try that - it's within your knowledge and ability. And if it doesn't work, try it a bit higher. If your machine is situated on something higher than your head in bed, put it on something lower so water won't collect in your mask (it happens and is called rainout).

Don't look at new masks as enemies, but the same way you do your toothbrush or bra - one trial at a time, hoping for a better result, but if not, there's always another. Just take it easy, and be glad you found lots of people here to help... but while I know being tired makes you feel cranky, a lot of us are in similar boats, just trying to help.

Julie wrote: You don't need someone here to tell you to try that....

a lot of us are in similar boats

...ahhhh...there it is......
It is not about the doc, the DME, the sleep center, he or she or them or they...
it's about you.

Alone,
in the dark of the night,
each of us makes the journey.

BeadyEl wrote:@djhall - I have an ResMed Autoset S9 - and as nearly as I can tell, there is no way for me to reduce the pressure.

If there was, I'd have done it in a heartbeat.

YES YES YES there is a way. All you have to do is go to apneaboard.com and download the clinicians instructions to your machine as was already mention in this thread. So now your heartbeat can settle down once you get the instructions and do it... or not.

Julie wrote:I'm really kind of bothered by your attitude - Cpap isn't a pop-a-pill and you'll feel great in the a.m. ... but while I know being tired makes you feel cranky, a lot of us are in similar boats, just trying to help.

Hey Julie, to whom is your comment directed? Myself? I'm the original poster, although I believe there is another newbie or two who posted on this thread regarding his/her own issues. So I'm not sure if you got us confused.

Just asking bc... if you are referring to me... I don't believe I have a bad attitude about this. I wasn't expecting perfection on the first night by any means- I am aware it may take several months to get everything working right. But on the flip side, I didn't expect to only get 22 minutes of sleep either. And most of the posters on here seem to echo that this is not an acceptable result. So they're trying to help me, and I appreciate it very much. I'm just trying to reach out and get as much info as I can to enable my success with this brand new system, and my posts and questions reflect that. I've never expressed that I'm going to abandon treatment. On the contrary, I'm 100% committed to making this work and finding solutions. I'm new, so there's a lot I'm learning here. But I'm not being cranky or having an attitude with people at all- my posts are very respectful, and I've thanked people for sharing their advice/wisdom/suggestions, etc. with me

Sorry to read your first night was so bad. You are in a good place with lots of help here.
It is a big adjustment that and will take some time.

I might suggest you use your cpap while You are reading a book or watching TV while relaxing.
If you wait until bed time you are adding the stress of trying to sleep and get used to machine at the same time.

I wish you Good Luck!

WindyCityEsq wrote:Hey Julie, to whom is your comment directed? Myself? I'm the original poster, although I believe there is another newbie or two who posted on this thread regarding his/her own issues. So I'm not sure if you got us confused.

I had the same question when I read that post. I understand how established members could react to some new visitors' posts the same way they would react to a new person at the gym complaining that exercise is hard and they want the secret to skipping to the end where they are fit and in shape and exercise just seems like a normal part of their day. From that perspective it makes sense to tell people to suck it up and put in the work like everyone else if they want the benefits.

However, I see so many posts of people who appear to get that attitude from their medical "support team" after being told they are sleep deprived, have a serious medical condition, and just need to learn an entirely new way of sleeping and/or behaving in their sleep.... now here is this air blower and mask we chose for you and which you have no control over, figure out how to sleep with it quick, because if you don't we are taking it back... we did our job, now you do yours and don't bother us with stupid questions and requests. I can't imagine how frustrated, alone, and helpless people who have that experience must feel. Fortunately, most members here tend to strike a reasonable balance between being sympathetic and supportive while also being upfront and unapologetic about the fact that you are going to have to fight through the process before you get to the other side.

Well, sorry if I came across too harshly (and it wouldn't be the first time), it's just that you sounded angry and impatient in your first note, as if you expected everything (and everyone) to be terrific right out of the box... though your last note is different. It is all very frustrating, and it would be great if everything worked just right the first time, but it doesn't... possibly someone should have warned you about that and was too impatient to do it... not professional.

Windy,

Another nasal cushion mask is the Wisp. I'm currently using the AirFit P10, at a fairly high pressure, however the Wisp is great if I have a cold, I wore it thru my last bout of pneumonia, then sanitized it so I'd have it ready if I need it again. I am mentioning this because I think the P10 is great, but I also find the Wisp usable too.

Hope tonight goes better for you.

Jen

I had the runny nose too and the frustration. I can tell you that this is a trial and error journey! That might help to manage your expectations better.

Runny nose...i found it to be a combo of "new sensation up your nose" and possibly allergic reaction. Not that your stuff is dirty...it's a reaction to new sensation. It got better after several days and "correct mask for me". Now, even after that, i had it sometimes. New doctor prescribed flonase and told me to do it before going to bed and only when the runny nose was happening. Voila...problem managed.

If your doctor isnt giving good guidance, you might try another. I changed and it is like night and day. New lady is so interested in my comfort and solving the problem vs dealing with an "assembly line" of compliance checks. New lady changed my settings, gave me flonase and i am finally getting better. She said that if this doesnt solve it, she might do this daytime sleepiness test and consider provigil. I told her i was concerned about my 1-1.5hr commute each way, which i dont even do daily. I like her style...least medications necessary instead of "pop a pill, problem solved". Plus shes looking at other causes of sleepiness (medications, other conditions)

Sleep can be a huge money making business...so you have to watch for guys who are out for the money moreso than your comfort and "success"

When using the Climateline hose on the S9 and if you are having a choice of temperature only then you are using the climate line hose.
With the Climateline hose the humidity is supposed to automatically deliver 80% humidity no matter what the temperature is.
That temperature setting just affects the temperature of the air. So it's just temp...make it comfortable.

If you want to change humidity being delivered you have to go out of automatic mode into manual mode and the humidity to be delivered is with settings 1 through 5 or 6 and again the temperature is just for temperature of the air.

If you check the board again today, I know I'm wondering how last night went......

@ djhall: Friday and Saturday night were much better. (The best being Friday night.)

I wasn't able to change my machine from CPAP to APAP. I did watch that instructional video one user on here posted for me, and followed those directions re: accessing the clinical screen. Unlike the instructional video example, my settings were locked and unchangeable. Prob locked by my DME. Called the DME- he can't change it w/o authority from my dr. Called my dr., and he's only in Mon-Thurs, so I have to call back tomorrow.

In order In order to change these settings in the meantime, I may have to get out my clinical manual and figure out something sneaky. I haven't had the time to look into that, as this weekend was my grandma's 90th bday party, and it was a huge event (rented venue, professional catering & photographer, etc., something more akin to what you'd see at a wedding). Anyway, with all of that going on, I haven't been able to research that. Currently at work now and will likely be until late at night.

So I've been stuck with it at CPAP mode on a constant 19. That's the bad news.

But the good news is I watched an instructional video on YouTube on how to fit my specific nasal mask, and it was VERY helpful. I hadn't realized I wore the headgear straps all wrong on my first night. After watching the video, I didn't wake up with a mask leak ONCE in the last two nights. YAY!

What DID wake me up the last two nights were a few mouth leaks. Not a mouth breather, but apparently there are 1-2 times every night where I open my mouth just a little. That eventually wakes me up now that I'm on CPAP bc it sucks me dry as the Sahara.

I am getting used to the 19 pressure better. Needed only 20 min of ramp time yesterday instead of the 40 min I had on the first two nights. Exhaling against that pressure is getting a little easier too.

The main probs I'm battling with now are (a) finding the best mask for me- i want to try nasal pillows and see how I do with them, as the nasal mask I have right now leaves red marks on my face that lasts 5-6 hours after I wake up and leaves my face feeling sore, (b) stopping mouth leaks that wake me up, and (c) today I had some rain out in my mask for the first time, even though the humidity/temp settings were the same as from the two nights before, which didn't cause rain out. But as far as mask leaks go-- very much improved. Apneas are under control. Only 0.15 last night w/no snoring according to Sleepyhead.

I don't feel any different yet (I'm still so fatigued) but I hear it takes a while for the effects to reverse. Maybe it will take a little longer for someone like me who has such severe OSA before, and went untreated for almost a decade.

Thanks for asking and thanks for the support!

DME can't lock you out of the clinical setup...you just have to do the secret way of getting into it.
If you tried the steps listed on the instructions or the video you may not be holding the buttons down long enough...it's full 5 seconds and there's a beep when you are successful.

DME is correct...he can't change it without doctor telling him to.
Patient's doing it...never seen any restriction on a patient doing it. It's like going to the pharmacy and picking up your RX meds. The pharmacist is bound by law to dispense and instruct per the RX...once you get the meds home...up to you if you alter time or whatever of dose.

Get with your DME about trying a nasal pillow mask...they will work with higher pressures. Ask about whatever mask trial period they offer. Most mask manufacturers offer 30 days per mask...not all DMEs honor it though because it means more paperwork for them. If they give you grief or refuse...let us know what kind of nasal pillow mask interests you and maybe someone can help or we can find one somewhere.

The mouth breathing...could just be habit from gasping for air and should reduce with time.
This is of course assuming that your nose is clear and not congested. I did a lot of mouth breathing initially but was able to breathe through my nose just fine so it was just habit and eventually it reduced to a manageable level.

The people that have the miracle and feel like a new person immediately are actually in the minority. The majority of people found it took some time to get adjusted and feeling good even when everything was optimal.
Lots of things affect how we feel and not everything can be fixed with the cpap machine.....as much as we would like for them to be fixed.

Frequent wake ups will greatly affect how we feel as well as how many hours we sleep... along with meds and a long list of other culprits.

Thanks Pugsy! Yes, I wrote down the two you recommended and I asked for those on Friday afternoon. Problem is, by the time I got my DME on the phone, it was 4pm and they closed in an hour. He said didn't have those two in stock, so he would order them for me. Once they came in, he would drop off both at the same time (surprised by that since I was told before I could only swap one mask at a time during the first 30 days), but he says he doesn't want to make the drive to my neck of the woods more than he has to (I live 1.5 hrs away) so he will be dropping off both as soon as they come in.

I'm glad for my having less/no more leaks on my existing masks, but I do have to put it on real tight in order to make that happen (19cm pressures x 8 hrs = tighter straps than what is comfortable). They leave longstanding marks on my face and leaves it sore. My upper lip and bridge of my nose is especially sore-- sort of feels like that mask is still on there, though I know it's not. I'm dubbing this phenomenon "phantom mask." So I'm def looking forward to those nasal pillows. Still a little concerned with how they will fair for a newbie like me at 19 cm pressure for 8 hours though. But I'm assured by you. If they don't work, then at least I tried.

I will try to change my clinical settings again. I don't remember hearing a beep. But I DO remember seeing all the screens/options the person in the video saw. Only he was able to change the settings, whereas I could only scroll up and down, and couldn't change them. I'll try again tonight.

I just realized the reason for my rain out. My husband turned off our heat yesterday afternoon (as the outdoor temps climbed) and he forgot to turn it back on at night. So when we woke up this morning, it was really cold. That's why I bet the rain out happened- bc our bedroom temp was cooler than normal.

Thanks for the assurance about the mouth opening thing. I really don't want to have to wear a chin strap, and I refuse to mouth tape, so I will continue to monitor my mouth leaks as the time goes on. Hopefully they reduce as I get more used to cpap. Question: right now, I realize my mouth leaks because I am waking up from them (currently once or twice a night). I adjust and then fall back asleep relatively quickly. But is there a chance that I am having mouth leaks that don't awaken me? If so, how do I monitor that on sleepyhead? (Does the "leaks" graph only monitor mask leaks and not mouth leaks?)

One last thing. I'm noticing some pressure on my teeth. Not so much pain. Just pressure and soreness on my front teeth that lasts all day. Strange, I know, but true. I hope this thing doesn't cause my teeth to shift. Is such a thing possible? If so, what can I do to protect my teeth from shifting? My smile is important.