Questions from a new user

Hello everyone and happy Thanksgiving!

I was just recently diagnosed - with obstructive apnea averaging 25 on my side and as much as 67 on my back. My O2 on average was 84%

I went in for both a sleep study and finished a titration study yesterday. I had a pretty good night at the titration with no apnea events and a pressure of only 6. Everyone I talked to said a pressure of 6 is unusually low. Could they have screwed this up? Could the Sleep tech have fallen asleep? She wasn't to swift.

That day I went and got my new CPAP machine - A ReMstar Auto A-Flex and Mask - The Fisher & Paykel Zest. This was my second choice not my first, but they used this mask during the titration study so I guess they thought it was the best one for me.

Last night - (the first time I used this at home) things were a little strange. First I was surprised by how much noise I was hearing from the mask. I don't remember that at the titration study. When I laid on my side I could hear my breathing really amplified. Almost like I was snoring. When I turned on my back it wasn't so bad. I turned the CFlex function to Max which seemed to help on my exhaling.

My wife said she could still hear me snoring during the night. This seemed odd as I didn't do this during the titration study. I took an Ambien CR both nights to help me fall asleep. I know the Ambien makes me snore more when I take it.

In general - I thought I would like this mask, but now, at home, it seems somewhat restrictive, noisy, and claustrophobic to me.
My first choice of masks were the sleep pillows. I have a 30 day take back trial - so I may switch to those and see if they work better.
I'm mainly a side sleeper but do switch back and forth quite a bit during the nights.

The reading on the machine in the morning was 2 % leakage and an AHI of 4.5%

#1. Would the AHI indicate that I don't have enough pressure at 6?
#2. Could the difference between the titration and the home experience be that I had the CFLEX on Max at home? Would the CFLEX be causing my higher AHI?
#3. Is it normal to hear this kind of noise from the mask at night? There was like a constant whistling sound but there did not seem to be any leakage around the mask.

I seemed to be fighting the mask a bit with some exagerated breathing. It was like I was hyper sensitive to the sounds of my breathing. Maybe this is normal as I'm still getting used to the mask and experience of being on the machine.

I guess the good news is that I slept through the night. The machine said my average sleep time was 6.5 hours - but I went to sleep with the machine on at 11:00pm and didn't get up until 8:30am. Why would it say I only used the machine for 6.5 hours? Go figure.

Any guidance from you all would be greatly appreciated. I have found the communications with my sleep center difficult at best. I felt like a revolving door there and had to really get aggressive to get any information at all out of them. I don't go back to see the technician again for two weeks.

This is a really great forum and I appreciate in advance all of you helping out the inexperienced.

Oh - I should also clarify that I am using the machine in straight CPAP mode not in auto. It is set for a pressure of 6 with a ramp that goes down to 4. I didn't use the ramp feature. I also have a humidifier and had that set at 1 - it seemed to use about 50% of the water last night. I live in the upper mid west and it was quite cold last night.

Sorry for not having included this.

Hi, first I should mention that your pressure of 6 is extremely low and most people will have 'exaggerated' breathing with it. If you know how to bump it up 1-2 notches I suggest you do so (you'd have to bump it a whole lot more before it mattered to anything . Secondly, you're using a nasal mask I believe, and that often does not address mouth breathing - so many of us have that problem once asleep and need to go to 'full face' masks like the Hybrid, Liberty, UltraMirage, etc. to keep from losing all the Cpap air that way.

As well, I wonder why you're using the machine in straight Cpap - did the doctor (vs tech) tell you to do so? You have a machine that allows your pressure to rise and 'catch' events that are higher than your prescribed pressure, and I would think it's worth trying out... I'd suggest setting your pressure range from 7 to 11, as a wider one won't be as effective.

You didn't mention having the software to track your progress, but if you had it, you could learn a lot more about how you're doing, so do consider getting it.

Don't worry too much about individual numbers (AHI, etc.) yet, not until you get everything else sorted out.

Cflex is to help with exhaling when the machine pressure is too high (yours isn't!) and you could turn it off if exhaling is not a problem.

Thanks for the reply.

Yes - I would say "exaggerated" breathing is a good way of describing last night.

I don't have the software but am in the process of purchasing it. I might look into going into the clinicians setup and adjusting the pressure up. This is the thing that realy ticks me off about my sleep clinic. They act like they could care less and no one ever reviews what anyone else is doing. I might as well experiment with it myself as I don't have any faith that they have a clue or care about any individual patient. Maybe when I visit the technician again - they can help me sort this out. But that isn't for another two weeks yet. I might just call them and tell them I need help sooner.

It amazes me that I have paid thousands of dollars for these sleep studies and I could have probably just gone home with an auto machine and figured it out myself.

I don't think I breath through my mouth at night - but I could be wrong. I was thinking of switching to the air pillow mask but might give the zep a try for couple more nights first.

Do you think it is a good idea to be messing with settings already or just wait and see what they say next week?

Hi, and welcome!

If you don't have the clinician's manual for your machine, you can get from this site: http://www.apneaboard.com/CPAP%20Adjustment.htm

I also think a setting of 6 is extremely low. Sometimes the titrated pressure is good for what happened that particular night, but we all know it also wasn't the ideal or best night of sleep! I think using a conservative pressure range of 6-11 or 7-11 as Julie suggested is a good place to start. I was titrated at 8 but my doc suggested I start out at 6-10. I've since tweaked my range to 7-10 after trying a few other ranges, this one seems to get the best results for me. Even when I tried straight cpap at 8, I didn't get the kind of results the lab said they got. I found my results with 8 were far worse than using the pressure range which allows the machine to adjust automatically to the events.

It is not too early to experiment...especially since yours is a low pressure case. If you had been titrated at a very high pressure, we would suggest leaving it to your doctor. You should become pro-active and the advocate of your own therapy. Just as diabetics handle their own monitors and insulin delivery, OSA patients should monitor their machine data and adjust things as needed.... and this is far safer than insulin...we are only talking about AIR!

As soon as you get your software, you will be able to see your data clearly and view the trends and leaks to be able to make good decisions for yourself. Keep reading the forum and the wiki to learn as much as you possibly can. Good luck and keep us posted!

Hey - thanks again for the great advice.

I found how to get into the clinician's menu - very easy - just hold down the two user buttons in the setup mode for 10 seconds.

The settings are also easy to figure out.

I adjusted mine to a range of 7-11 instead of the straight 6 I had it set at last night. I did order the software as I want to become active with my own treatment. If the sleep clinic doesn't like that - too bad. I'm an engineer by trade and it's in my DNA to tinker.

One other question I had is I have an option of setting it in auto mode between C-Flex and A-Flex. My understanding is that A-Flex adjusts both the incoming pressure and the exhaling pressure? Is that right. I was going to try it with A-Flex tonight with the above range and see what happens.

Let me know if you think A-Flex is the best way to go for me.

I figure I slept through the night the first night and only had an AHI of 4.3 so that wasn't so bad. If I increase the pressure a little more tonight I will see what happens tomorrow.

Thanks again for all your help and support.

A-flex is probably the best bet for you to try as it incorporates all scenarios, if not as strongly as c-flex acts on exhalation (lots of people don't use it). Just one note, which actually isn't going to really apply to you unless you bump your pressure to 15 or so, but the more pressure you use, the faster it'll escape to the wind if you are mouth breathing (and how can you really know when you're sleeping unless someone's paying very close attention even to lip wiggles over a long time)? Try the tape.

I have only been on cpap for 1 1/2 years now, so I am in no way an expert at this. I have I believe the same machine as you and setup the same, Pressure at 6 and not on auto. The sleep doc told me that I had over 77 events an hour and when he put me on the machine at a pressure of 6 I fell to sleep on my side and never moved for 6 hours untill he woke me up. I have no software but my weekly AHI average is between 1.5 and 2.5 and my monthly AHI is around 2.1 . My mask is the Swift LT, I tried the Swift FX but my AHI steadly went up for over a week and I stoped using it at 4.7 AHI and went back to the Swift LT. Can I get better AHI readings with software and tweeking my pressure up, maybe. I feel great all the time now that I am on cpap and don't feel the need to do any adjusting other than trying differant masks for comfort. I sleep on my side almost all the time and most of the time I sleep all night long and average 7 hours of sleep. I do not mouth breath except for rare occasions so that does not seem to be a problem. For me I don't want to ajust my pressure because my machine uses very little power on a pressure of 6, so with out my humidifier I can go for a few days with my 18amp battery and I went 9 days with my battery and a solor panel. My suggestion is give it a little time on a pressure of 6 and try ajusting and getting use to your mask or try differant masks. If after awhile you can't get your AHI down to where you want or feel it needs to be then start adjusting thing the way you want. I think the software is a good idea and I would say go for it, I just have not got around into checking out the software thing yet.

Albert

I'm not sure you should be increasing your pressure to 7 if you were titrated at 6, but you might want to run in auto at 6 to 10 or 11 until you get your software and can see what's going on. That will give you a lot of information about your pressure needs in real life. The fact that many of us with higher pressures feel like we are suffocating at a pressure as low as 6 does NOT mean that it isn't the right pressure for YOU.

The reading on the machine in the morning was 2 % leakage and an AHI of 4.5%
#1. Would the AHI indicate that I don't have enough pressure at 6?

It's not unusual for the first few nights to have high readings as you "settle" into this therapy. One night does not a trend make, and you should not make a lot of frequent and rapid changes or you won't be able to tell what works and what doesn't.

Keep in mind that the numbers that appear on the screen are AVERAGES for 7 and 30 days, so you do not get specific enough information to make any real decisions (unless they are wildly out of whack with high AHI's or Large Leaks).

#2. Could the difference between the titration and the home experience be that I had the CFLEX on Max at home? Would the CFLEX be causing my higher AHI?

At lower pressures, flex (or EPR) settings might make a difference, but again, you should look at trends over time (5 to 7 days at least) to get a good idea of whether or not this is a problem for you. Flex/EPR settings are generally NOT a problem at higher pressures as there is enough residual pressure to keep the airway open during exhalation.

#3. Is it normal to hear this kind of noise from the mask at night? There was like a constant whistling sound but there did not seem to be any leakage around the mask.

SOME noise is normal, depending on the mask. There is "conducted" noise in the mask and hose. This sound is sometimes magnified by what it touches--your pillow or the mattress for instance. The noise is conducted in your head, so if this is the problem you will find it LOUDER if you put in earplugs. It is easily masked by white noise like a fan, sound machine, or MP3 player if it's really bugging you. Try repositioning your hose and mask to see if that helps.

Other noise may be caused by the outflow vent. If the air hits something solid, it can make a lot of noise. Leaks can be noisy, too.

The machine said my average sleep time was 6.5 hours - but I went to sleep with the machine on at 11:00pm and didn't get up until 8:30am. Why would it say I only used the machine for 6.5 hours? Go figure.

This may be an average too (1 hour before 12 a.m. and 8.5 hours after 12 a.m. plus any other blower hours testing out the machine).

The Fisher & Paykel Zest. This was my second choice not my first, but they used this mask during the titration study so I guess they thought it was the best one for me.

You should get whatever mask you want, that will make you comfortable, that will work for you, and help you remain compliant. If you want the nasal pillows, then insist they swap them out. Major mask manufacturers allow DME's to take masks in return if used less than 30 days, so if you want to swap out the mask, you have a limited window. This is YOUR therapy, nobody else's.

You sound like overall you had a great night! You're on your way. I sense a geeky tendency that most of us here share--you'll enjoy having the software and being in charge of your own therapy. Just be careful not to overthink things too much. Eventually the goal is to strap on the mask, go to sleep, and be well. Not too much rocket science after the initial period.

Thanks everyone for your great replies. This really helps me being new to this. I guess it is somewhat normal to "freak out" over this new contraption the first couple of nights. Everything is so new.

Hopefully, I will settle into something that works.

New report - I changed my settings from a straight CPAP 6 pressure with CFLEX at 3 to Auto - range 6-10 with A-Flex at 1. The machine and I got along a lot better. My average AHI went down to 3.5 from 4.3 so I guess it improved things. I was able to breath much better on these settings.

I still didn't have a very restful nights sleep though. First it took me about 2 hours to fall asleep. (Very frustrating) Then I kept waking up every couple of hours throughout the night very conscious of this mask being on me. I think overall I was more comfortable breathing with the mask on but still very conscious of the mask being there. I had no leaks which was good but my face around my eyes was kind of puffy in the morning.

Do you think I have the mask on too tight?

How much more time do you think I should give this mask before trying to switch to air pillows? The DME is not open this Friday so I will be forced to try the F&P Zest for 3 more days. Maybe that's good to give it a chance.

Another question - is there a way to see just your last night's AHI? Or is it always averaged on a 7 day cycle? (I'm referring to the readings on the Remstar CPAP machine itself)

How long do you all give a particular mask before changing to something different? I only have 30 days with my DME to get the free exchange option.

Thanks so much for all the great advice here. Soon I will be getting the software so I can see what is going on in more detail.

Hi digitaleagle,

It seems that finding/getting used to the right mask is the hardest part for most of us. Have you tried wearing the mask during the day or evening while reading, watching tv, etc, in your favorite chair? That can help a lot with desensitization.

Linda

It sounds like you are doing pretty well, mask should be tight enough to seal ,but not uncomfortable, try turning on you machine at the top pressure, then fit your mask just until it doesn't leak. Some mark the straps with a magic marker to make duplicating the fit easier. You will get used to the feel of the mask on your face, unless you are having lots of trouble give it a few days . The softwear makes tracking a lot easier, change just one thing at a time, look for trends, not just one nights data

It is possible that with a c-flex of 3 that with a pressure of 6 you felt starved for air. If you go back to a pressure of 6, I would try it without c-flex being enabled or 1 at the most.

Just my own opinion.

I prefer my machine in auto mode, with a narrow range and an A-Flex setting of 1. We have the same machine and it looks like you may have the same preferences in terms of settings as I do. Feeling as though you are breathing much better and beginning to get along better with your machine with these settings is a good sign.

You do need to give yourself time to get used to it all but, with this latest change, you seem to be adjusting better. Leave the setting as they are for a week or so and I think you will begin to be more comfortable. The mask is a different story. You probably will get used to the Zest but you may have it just a little too tight. Try it a little looser.

As you become more comfortable with the machine, the mask may be better too.

You can only get 1 night data with the software. It is worth the $99 in my opinion.