Need a quick critique on this report please

[Cudos]

Hi all,

I have been on cpap trial for 3 weeks now with not much success, mostly keeping the mask on due to suffocating. I was on the Resmed Autoset 10 1st. That was my first night on Cpap ever. It was set to auto and its the report you are going to see.

My RRT switched me to straight CPAP due to centrals. I have been unable to (so far) get past the suffocating feeling I have every night despite her changing settings and machines now to the dreammaker.

I had asked to try "auto" again seeing as it was the only real night I managed to fall asleep not feeling like I was suffocating. That was 2 nights ago and I did manage to log 6-7 hours each night in the auto mode. It just feels much more comfortable than straight cpap.

I haven't been unable to upload my last 2 "auto" sessions to SH due to a SD card error so I won't know the results until tomorrow when I return the trial machine to my RRT.

My question is this. Based on the report I just posted on my very 1st night on "auto" cpap and the success I've had with it over fixed pressure should I stay with using the 'auto" setting??? and what if my RRT says no because of the centrals and insists on straight cpap. Should I accept that or are there ways to eliminate the CA's and still use the auto setting?

Looking at that report what do the experts here see??

Thanks

[Thatgirl]

The first thing to try to get rid of the centrals is to lower the exhaled pressure relief, which you currently have maxed out. On this report, your machine is currently in Autoset mode still, although at a very tight pressure range maxing out at 9. 9 is not enough pressure for you as you max out at that quickly and then have obstructive apneas through that pressure, and obstructives make up the majority of your AHI. Granted, this is one night's worth of data, so it's hard to get a clear picture. Is your suffocation feeling feeling like you're not getting enough air, or feeling like you can't exhale?

[Cudos]

Thanks thatgirl, the suffocating sensation is mostly on exhale, I seem to have to work harder exhaling which causes quicker inhaling which in turn repeats the cycle, although the auto mode I find much easier to deal with over straight pressure.

My RRT pretty much dismissed auto mode after seeing this report of the centrals. I think she might see the same thing on these past 2 nights on auto and probably say no to auto mode. I was hoping with some adjustment on auto I could eventually get rid of the CA's or is she right when she says my body just doesn't like auto mode and I have to use straight pressure.

I think I'm likely done with the trial period after 3 weeks now and with little success really. I will probably just bite the bullet on the Phillips dream station and keep experimenting on my own using SH and the good folks here. She is making changes remotely to the machine and I have no control.

I was just worried about the centrals I was having, maybe AUTO will work once I play with the settings on my own time.

Cheers

[CPAP101]

Good Afternoon,
My first question would be what mask do you have, nasal or Full Face, or nasal pillows? Knowing which mask you have could explain the suffocating feeling especially nasal pillows which go right under you nose like an oxygen cannula. The opening on the pillows are very narrow almost feels like breathing through a straw for some. By looking at your report and noticing that that pressure is maxing out pretty quick, I would recommend a higher pressure on the max pressure range. Maybe something in the neighborhood of 12. When I read a report on the Airsense 10 Auto I look for 2 major things AI and Central because this a complete loss of breath meaning you are not getting enough pressure. Also remember your unit should have a sticker on it and there should be some literature in your bag regarding My air. This is a program you can link to your phone, computer and or tablet at home. Its sort of like a coaching app that gives you a score on overall therapy and I find it very useful in helping people transition into life with CPAP as I call it.

[Cudos]

Thanks CPAP101,

I'm using the Resmed F10 FFM. I tried the nasal mask but I'm a big mouth breather with allergies and a deviated septum. With my RRT changes the setting remotely I have to wait usually a week to see her. I would like to try some higher pressures on the top end as others have also suggested. Again, I think it will come down to me buying the machine and having more control over it.

Cheers

[Holden4th]

Thanks CPAP101,

Again, I think it will come down to me buying the machine and having more control over it.

Cheers

...and therefore taking control of your own therapy.

The advice on here is great and the knowledge of some of our 'veteran' (I'm not talking age but forum longevity) is quite astounding.

[Jay Aitchsee]

Everyone (well, at least many) see a few centrals and freak out. Remember, true centrals only occur during sleep and the machines can't tell when one is asleep. Most of the centrals reported on this forum are probably due to arousals resulting from disturbances or entering a period of waking. These arousals can be accompanied by a brief holding of breath scored by the machine as centrals which would not be scored during an actual PSG. Modern APAP machines due not react to centrals. From the traces above, it can be seen that the centrals occur before an increase in pressure and are not present at some point after the pressure has increased. Your RT can see that, too.

[robysue]

Cudos,

I'm sorry to hear you're still having really severe problems.

You say you are still feeling like you are suffocating on exhales. Is that because there's so much pressure that it's hard to exhale fully? If so, then turning down the EPR is likely to make that problem worse rather than better.

You say the RT is nixing the idea of using APAP because of the centrals. Some people do sleep better on straight CPAP than on APAP. So there's nothing wrong per se in trying straight pressures again. However, most of your CAs were scored when the pressure was still down at the bottom of your APAP pressure range---as in they were scored between 20:00 and 21:30. Which brings up another question: Are the time stamps on this data correct? The report says that you used the machine for 9:06 and the time stamps for the "night" are 15:00 (3 pm) to 0:00 (midnight) which is a 9 hour period. Are you on a night shift and sleeping from 3:00pm to midnight? Or is the clock on the A10 not set correctly?

If you were using the A10 for the whole period shown, then why is there no data at all between 16:00 and 19:30?

Can you give us a better idea of when you were actually sleeping with the machine on this "night"?

Also, you say you are having SD card problems. SH does not write anything to the SD card. If SH can't read the SD card, then chances are the software at the DME will not be able to read it either. What does the SD card error say? Can you write it down exactly as it appears even if it makes no sense to you? And is it displayed on the A10? Or on your computer? Or inside SH?

I think I'm likely done with the trial period after 3 weeks now and with little success really. I will probably just bite the bullet on the Phillips dream station and keep experimenting on my own using SH and the good folks here. She is making changes remotely to the machine and I have no control.

The DreamStation is a good machine as long as it says "Pro" or "Auto" on it.

But I'll also add this: I personally would tell the RT that I do NOT want her making any changes remotely to my machine without my explicit permission and knowledge. And I'd enforce that by keeping the damn thing in airplane mode if necessary to keep the DME from making unauthorized changes without my knowledge. This is, in my opinion, the most frightening thing about the modem-equipped CPAPs---the DME should not have the ability to make a change without the explicit knowledge and permission of the person using the machine. I am also quite afraid that it's only a matter of time before the manufacturers do away with the data cards completely, and then we won't have access to that data through SleepyHead.

I'll get off my soapbox now.

And I'll end with one more suggestion: Cudos, how long have you been trying to make a go of CPAP/APAP with both the DreamStation and the A10? Its been a couple of months, hasn't it? You've never been able to exhale comfortably enough to sleep well with the machine, is that correct? And you've had the exhalation relief turned on on both machines, correct? In that case, it may be time to ask about whether being switched to a bilevel may be necessary to give you enough exhalation relief to breathe comfortably.

[Cudos]

Thanks everyone,

Robysue,

I don't believe the A10 time was set properly, also I didn't start using the machine until 20:00 mark 9pm our time, the early blip was probably me playing with it a little.
I am still having some really bad moments with the heavy, thick, muggy sensation in the mask which seems to add to the exhale "and" inhale. I had found the "auto" better, but of course my pressure's were not that high. I've noticed I need a cooler rather than warmer mask environment. I think that has added to the muggy stuffy fighting for breath in "and" out now.

I am going to get our A/C installed to control room temp and then play with the heated hose and humidity settings which I don't currently have control over. yes, I know I can change them but I had made a promise to my RTT that I would not mess with them. That is going to change after today when i see her and tell her I will go with the dreamstation (i think) , seems to have a easier flow rate if that makes sense, and that I will be proactive in my own settings and such.

I am at the end of week 3

The sd card error I was having was probably not so much an error as the card was not formatted and SH said it needed to be formatted before any data could be read. Being as I ran out of time and its not my machine I didn't want to start taking liberties with their machine.

I don't have any SH data from last night, I managed some hours, not overly restful, mask came once or twice to gather my composure against the heavy feeling inhaling and exhaling. I do have some O2 reading I downloaded from oximeter. Maybe there some insight to be had there, I apologize for the somewhat faded pic.

Thanks again Robysue!!

[HoseCrusher]

Your O2 levels and pulse rate seem reasonable. Something must be working.

[Cudos]

"I am not a Bipap candidate"

I was just told after inquiring about a Bipap over Cpap do to my ongoing trouble trying to breath "exhale" on the CPAP/AUTO settings.

I was told again that Bipap was for COPD and heart patients. I was told that Bipap does not treat the airway but the lung (increasing pressure's) in the lung for those who can't breath well on their own. Dismissed it completely. They said the next stop for those on Bipap was intubation. They also said I would need approval from a pulmonary specialist for use of a Bipap and that I was NOT a candidate because I did not suffer from any serious respiratory disease.

My RRT visit yesterday has me now off any treatment for a few weeks to "settle" down and get back to normal. They feel I'm just over anxious which is what is causing my suffocating feeling in the mask.

The last report of me is on the 'auto" setting 5-10. They said I was at a full 10 all night indicating i was wanting more pressure. But increasing pressure increases my exhale suffocation which 'apparently " is all in my g.dam head!!

They said the data showed me as mess, getting little useful rest and fighting the treatment, hence the hiatus their sending me on . They still believe I am a better candidate for straight pressure, although I struggled on both I did manage to fall asleep at points on the "auto" despite the ugly readings.

So I guess when I return (if) I return I will go back to straight pressure, assuming I have found my inner Chi and have leaned how to let things go before bedtime. I felt as If I was at the psychiatrists office at not a sleep clinic.

Yes I am a type A. But I also was looking forward to treatment and went in with a good attitude. At bedtime I went in with a good feeling that the CPAP was a friend and not a foe but yet I struggle with the suffocation despite all the settings and modalities they tried.

Its all in my head!!

[robysue]

I am still having some really bad moments with the heavy, thick, muggy sensation in the mask which seems to add to the exhale "and" inhale.

Are you using a heated hose? If so, turn it off. Are you using a heated humidifier? If so, turn it down or turn it off.

Not everyone's nose likes or wants a heated hose. Not everyone's nose likes or wants the extra humidification from a heated humidifier.

Also, if you are running the hose under the covers next to your body, you might want to run the hose on top of the covers or hang it overhead.

I am going to get our A/C installed to control room temp and then play with the heated hose and humidity settings which I don't currently have control over. yes, I know I can change them but I had made a promise to my RTT that I would not mess with them.

Heated hose and humidifier settings are NOT therapeutic settings. They are comfort settings. And you should have full access to them. And you need to change them to make yourself more comfortable. If the RTT says otherwise, then I think you need to tell the RTT that s/he is not the one sleeping with the machine---you are. And you are feeling like you are sleeping in a swamp with the settings the RTT is saying you must use.

Don't let the RTT bully you into believing that s/he knows more about what will make you most comfortable in your own bed when you are trying to get to sleep while using the machine.

That is going to change after today when i see her and tell her I will go with the dreamstation (i think) , seems to have a easier flow rate if that makes sense, and that I will be proactive in my own settings and such.

Yep. Makes sense to me. I never could tolerate the S9 AutoSet that I had the first 3 months of PAPing.

"I am not a Bipap candidate"

I was just told after inquiring about a Bipap over Cpap do to my ongoing trouble trying to breath "exhale" on the CPAP/AUTO settings.

WHO told you this? The RTT or a sleep doc? Remember, the RTT is NOT the one who is authorized to make the decision about whether you do or do not qualify for BiPAP.

I was told again that Bipap was for COPD and heart patients. I was told that Bipap does not treat the airway but the lung (increasing pressure's) in the lung for those who can't breath well on their own. Dismissed it completely. They said the next stop for those on Bipap was intubation. They also said I would need approval from a pulmonary specialist for use of a Bipap and that I was NOT a candidate because I did not suffer from any serious respiratory disease.

This is (politely speaking) poppycock.

I am on BiPAP and I do NOT have COPD or heart disease. I can breath just fine on my own (except when my upper airway collapses due to OSA). I do not suffere from any serious respiratory disease.

But I could not get restful, relaxing sleep when I was on CPAP/APAP due to aerophagia and not being able to exhale comfortably. And after 2 months of trying desperately to get some decent sleep, it was my sleep doc's PA who said she and the sleep doc had discussed my case and the only idea they could come up with was for me to try bilevel. I was floored when the PA made that suggestion since it had not occurred to me at all that BiPAP might be more comfortable for me than CPAP/APAP was.

My RRT visit yesterday has me now off any treatment for a few weeks to "settle" down and get back to normal. They feel I'm just over anxious which is what is causing my suffocating feeling in the mask.

Pardon my saying it, but this makes no sense at all. The RRT should NOT be the one making medical decisions about whether you should or should not be taken off of PAP. That's a decision that should be left to a qualified sleep doctor.

Also, quite frankly, unless the RRT does something different in terms of setting up the machine or in terms of changing you from CPAP/APAP to bilevel, there's no good reason to believe that trying PAP in "a few weeks" is going to be any easier for you: The exact issues that you have been dealing with are still going to be there AND you're going to have the whole "It didn't work last time" stuff to work through psychologically before your brain will make peace with the machine.

The last report of me is on the 'auto" setting 5-10. They said I was at a full 10 all night indicating i was wanting more pressure. But increasing pressure increases my exhale suffocation which 'apparently " is all in my g.dam head!!

Given the OA index and the HI on your previous reports, that is indeed evidence that you need more than 10cm to control your OSA. The fact that you cannot handle more pressure than that with the exhalation problem, indicates that you may indeed do better on bilevel. By the way, many sleep labs will routinely switch a titration patient to bilevel if the pressure gets to 15cm even without any history of COPD, heart disease, or other history of respiratory illness. It's known that a lot of people have trouble tolerating (high) pressure and the drop from IPAP to EPAP makes higher pressure much easier for many people to tolerate bilevel. It is ridiculous that you keep being told that bilevel is only for people with COPD or heart disease.

They said the data showed me as mess, getting little useful rest and fighting the treatment, hence the hiatus their sending me on . They still believe I am a better candidate for straight pressure, although I struggled on both I did manage to fall asleep at points on the "auto" despite the ugly readings.

"They" don't seem to understand that you need more than 10cm of pressure even if you are using straight pressure and that you can't seem to tolerate that much pressure even with exhalation relief turned on.

So I guess when I return (if) I return I will go back to straight pressure, assuming I have found my inner Chi and have leaned how to let things go before bedtime. I felt as If I was at the psychiatrists office at not a sleep clinic.

It sounds like the people at the sleep clinic are in full Blame the Patient for NOT Getting Better mode.

My guess is that the only way you are going to get these idiots to understand that what they are telling you to do is NOT WORKING is to hit them over the head with the fact that things are NOT WORKING.

My advice:

1) The next time you start PAP or if you choose to keep PAPing, keep your PAP machine in airport mode all the time. This will prevent the sleep clinic from changing the settings without your knowledge. If they call you telling you something is wrong, play the innocent. Just remember that every time they change your settings, you are a guinea pig in their experiment. If you can't or won't do that, then you are going to have to call and complain every single time they monkey with your settings and things get worse.

2) Find a hose temp/humidifier setting combination that minimizes or eliminates the sleeping in a swamp feeling. If the sleep clinic folks change the settings back to something that triggers the swamp feeling, call them the next morning and tell them you cannot tolerate a heated hose set higher than x-degrees or a heated humidifier set higher than the y setting and you noticed the settings had been altered by them yet again and want a note put in your file that says they are NOT authorized to make changes to your setting without your prior approval.

3) Find the most comfortable EPR/Flex setting for you. In other words find the EPR/Flex setting that makes exhaling most comfortable and breathing most normal feeling. If the sleep clinic folks change the EPR/Fless settings something that makes it more difficult to exhale or makes your breathing feel weird, call them the next morning and tell them you are most comfortable when EPR/Flex is set to x and you noticed the EPR/Flex setting had been altered by them yet again and want a note put in your file that says they are NOT authorized to make changes to your setting without your prior approval.

4) Keep a sleep log that contains when you went to bed, when you got up, how restless you were during the night, and a note about how (un)comfortable you felt if you had problems sleeping. Also make a note of how (un)rested you feel when you get up in the morning. If night time wakes are an issue, the easiest way I know to document that you are waking up a lot more than you should is to turn the machine off and back on every time you wake up enough to know that you are awake.

Its all in my head!!

Your current problems are NOT all in your head. Don't let them convince you that they're all in your head. You went into this with a positive attitude---your attitude was much more positive than mine was when I started 5.5 years ago. But you've hit some pretty serious snags and it sounds like the idiots who are supposed to be treating you have decided that those snags are "not real". That's not fair to you and if you have a choice in the matter, you might very well want to consider finding a different sleep doc/sleep clinic that is more flexible when it comes to dealing with new PAPers who are faced with serious problems in tolerating PAP therapy.

[Cudos]

Thanks Robysue,

I've already seen my GP prior to my last visit yesterday to my RRT. He told me that Bipap was for very ill people. I now know he does know any better either so arguing with him or the RRT is futile.

The minute you mention 'all' the information you've read in groups such as this, and all the success stories, from all the very intelligent and EXPERIENCED people I've seen on the site alone they just dismiss it and me as just another self diagnosing wannabe internet doctor.

I've had 3 weeks of experimenting, and every Thursday has been my deadline to bring the machine back for more of the same chit chat and then off for another week till the deadline with no idea what they were changing or if any changes I perceived were actual changes or just in my head.

#1 I will give a week or 2, I told them I would be back and the machine would be bought through my insurance one way or the other and that i wanted more control over the settings, (air plane mode indeed) They didn't seem to mind that idea, I'm assuming because of the sale. I told them they could tell my GP what ever they wanted as far as a prescription went so long as i ended up with a "auto" machine.

#2 If they renege on me i will go to my GP, who originally scoffed at the idea that I needed to visit a sleep clinic and only referred me at my insistence. I will tell him I have no faith in the clinic and want a prescription for the machine and that i don't care what he writes on the script so long as its for an "auto" and I will buy it online, which I have mentioned to him previously. He is skeptical about these private sleep clinics anyways. And remember this, his words to me "you are not obese, you don't have a big fat neck, you don't fit the profile for sleep apnea"
This is the ignorance i have to deal with. Thank God for the internet is all i can say, and thank god for cptalk!!!!

#3 My insurance will cover 2K at 100%. I will have the machine to myself, no pressure, no deadlines, and if it takes me a year of trying so be it. At least I know I can come here and get some common sense information. If it turns in to a door stop, so be it, it will be my door stop on my terms.!

So, thanks again Robysue!!! as always you are logical and make sense and I will take all your advice on settings and such soon as I return. I will report back when I have a machine in tow and no pressure to achieve a certain expectation by Thursday of every week!

Cheers for now