Puff 'n' Suck Phenomenon

[Centralea]

I've just joined. My main problem is central sleep apnoea, with a couple of the other things thrown in.

After an overnight sleep study, I am currently trialling a unit, the Phillips Respironics System One with a nasal device.
I can't understand a phenomenon which happened frequently at varying intervals. I would be breathing normally, and suddenly the machine would puff a stronger blast of air in my nostrils, and then seem to cut out or even suck the air back. It was quite scary, even though I knew it could not totally cut off my air supply because of the vent. After a couple of weeks the unit was exchanged for another, in case there was a fault with the pump. I now find this unit doing a similar thing, though not with such a strong blast.

I haven't been able to find any reference to such a thing on the posts. Is it a known / normal / unknown / peculiar / horrifying / unremarkable / disgraceful / boring / interesting / long-since-sorted / incompetent / sort of thing to happen?

[chunkyfrog]

Auto machines pulse to check for an obstruction. I have only been awake for this a couple of times.
I hit the power button twice ('off'. and 'begin ramp') and went back to sleep.
If you could be more specific about your diagnosis and equipment, some here may have a clue.

[centralea]

Okay, I'll come back later and work out how to do all that, enter diagnosis and equipment in the signature line. When I first tried to post, I was told "my" name was already taken, so I changed the spelling a bit and it accepted me as a guest. It's already tomorrow where I live.

This Puff n Suck was happening so often, not long after switching on, that I started counting in between Puffs. A count of seven seemed a bit frequent!

I noticed someone else commenting about there being no manual with a hire machine, and how a verbal explanation is not really enough, and I agree. I've even tried to put the mask on back to front, and it nearly worked - maybe I need to tie a string on the front or something, it's so hard to tell. It would be so nice to know how a particular model works and what one can expect. Their instruction sheet instructed one to consult the (absent) instruction book to know how the unit works!

Study results Hypopnoea 23.1 in total sleep; Obstructive o.2, Mixed apnoea 0.5, Central Apnoea 11.5, Hypopnea 10.8, Longest duration of apnoea 142 seconds, mild snore index. Minimum Sa02 while asleep 78, Maximum de-saturation 78%, 25 awakenings, number of arousals 109, respiratory arousal 11.0. REM sleep reduced (19.5% of total sleep time).

Any use?

[Pugsy]

Look at your machine carefully to determine exact make and model.
Go to this link and scroll down to the bottom and follow instructions on how to request a provider/clinical manual for your machine. Provider manual is much more comprehensive than the user manual you may have received.
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

[Centralia]

Many thanks for that interesting information. I followed the links and downloaded the information, though I won't try to alter anything a clinician should do - it is just a loan or hire machine. I couldn't determine where to find just the ordinary instruction manual that patients ought to get.

I still haven't got over last night's effort. It is certainly set differently to the first machine which I started off with. It doesn't give a hard puff, it just gives an apparently normal flow, but cuts out before I have finished breathing in, so that my inward breath is suddenly curtailed. It doesn't seem particularly "normal" when I hit the reset button. Round about four a.m. I gave up and switched off, as I really needed to get some sleep to get up and go this morning. If I thought the other machine was awful, this is worse. At least I did get two nights' sleep with the other one.

When it got into its stride, it seemed to be determining when I should breathe, but only allowing for somebody with rather small lungs. I'm a tall person and was told once many years ago that I had big lung capacity.

I didn't think of trying abdominal breathing, but by the time I had consistently failed to get full "normal" breaths my heart was pounding and I was quite upset. I still don't seem able to breathe without conscious effort (evening where I live now), I seem to be having to remember to breathe, and my lungs feel sore, as if there is a coating on them, and a desire to cough that I don't want to indulge, as it doesn't want to cough and go, it wants to cough and stay and cough again and again.

My instructions were to try and sleep on my side, but that just makes the mask leak. So to try to avoid lying supine, I adopt a new "three-quarter" position - not supine, but not side either.

This has been getting more distressing instead of more possible.

Thanks so much for setting me on a path to understanding things.

The machine is Phillips Respironics. System One. Remstar Auto A-flex.
I have downloaded a user manual from respironicsremstars .respironics. com /PDF/ REMstarAutoUserManual . pdf

I'm going to persevere, but I'm not looking forward to tonight. At least I have a manual to refer to now!

Thanks again.

POST SCRIPT / EDIT In case any new reader in the future is confused by the disparity between my listed equipment and what I am talking about - I am now using something different. The first machine I used which gave me such a hard time was a Respironics auto, which was probably trying to save my life by pumping air to clear an obstruction that wasn't there! This machine was exchanged for a non-auto one, which was easier to tolerate once I got used to it but didn't treat me. As I understand things now, central apnoea, which is my main problem, does not need the hard puff of air to blast away any obstructions, because the airways are quite clear, just not in operation because the brain isn't sending the necessary signals.

[chunkyfrog]

Cpap machines follow your breathing rhythm. You should not have to follow it.
You breathe the way that is comfortable for you, and the machine will follow.
You are in charge. If you are anxious and hold your breath, it will try to help you.
This is what it is doing. Wear it while reading or watching TV, while it is running,
and get used to being in control while awake--the rest will follow.

[tetragon]

Is A-Flex or C-Flex+ enabled? They are comfort features that I found made my nights unpleasant. When I use C-Flex+, I found that it felt like the machine was cutting off the air flow before I finished inhaling. Depending upon how the machine is set up, you can try three different settings (1, 2, or 3) for whichever is selected without entering clinician mode. To disable it entirely or to switch to plain C-Flex (which I don't get that cut-off feeling with), you need clinician mode.

The occasional stronger blast of air may be a "pressure pulse" from the machine or a proper increase in pressure. The other time I got strong blasts of air is unlikely to be happening now (it was with every breath), as it was when I decided to play with the resistance setting. But your description does sound like pressure pulses. The machine sends them out, once every five seconds, when it thinks you may be in apnea, in an attempt to classify what's happening.

[emt_271]

Respironics machine uses the pulses to determine OA, or CA events. Mine does it all the time when there is no respiratory effort for around 5 to 7 seconds. It is the normal function of the System 1 machine, not a problem. It is totally impossible for the machine to suck air bac the tubing. It is a centrifugal type blower, it produces flow no matter what direction the motor turns.

As for the manual that comes with the unit, I have one, but all it tells is how to set the machine up, not how to use it.

As for the mask leaking when you are on your side I found that if the mask was too tight it leaked when I was on my side. Somebody posted the best post on how to put on the mask some time ago. It basically told about the mask has to have room to inflate to seal properly. Once I loosened it up it was much better.

Hang in there you will get used to the pulsing!

[archangle]

Respironics machine uses the pulses to determine OA, or CA events. Mine does it all the time when there is no respiratory effort for around 5 to 7 seconds. It is the normal function of the System 1 machine, not a problem. It is totally impossible for the machine to suck air bac the tubing. It is a centrifugal type blower, it produces flow no matter what direction the motor turns.

As for the manual that comes with the unit, I have one, but all it tells is how to set the machine up, not how to use it.

As for the mask leaking when you are on your side I found that if the mask was too tight it leaked when I was on my side. Somebody posted the best post on how to put on the mask some time ago. It basically told about the mask has to have room to inflate to seal properly. Once I loosened it up it was much better.

Hang in there you will get used to the pulsing!

Something else seems to be going on here. Lots of people report some sort of "puffing" that happens in PRS1 machines that is unrelated to "pressure pulses." If you look at the data with SleepyHead or Encore, there are no pressure pulses for many people who report this. PRS1 pressure pulses should only occur during a hypopnea or apnea.

I notice that my mask "pumps" up and down with my breathing or when I swallow with my PRS1, and my S9 doesn't do anything similar.

Unfortunately, I don't have the explanation. I think what I see is related to the machine trying to keep the pressure at the mask constant in changing airflow conditions.

[Centralia]

Thanks for your replies.

I persevered again last night (Sunday night), but gave up in the small hours, not only to try to get some sleep, but also because again my lungs were getting sore and my heart rate was increasing. I didn't want to get to feel like I had on Saturday night.

Having downloaded the manual, I was able to try three settings on what I now see is called "pressure relief". None were comfortable, but one did seem less scary than the others. To impose my will on the willing helper, and breathe for the length of time I wanted to, I had to breathe really hard, which is not an all night option. I also noticed an indication that the device should perhaps not be used in pathological low blood pressure - I'm not sure how pathological mine is. I also discovered that the water tank had not been switched on - I don't know whether the first machine had been switched on or not.

There was an illuminating post by avi123 on Cheyne-Stokes respiration saying that for central apnoea an ASV machine is recommended.

A comment in a search I made said that adaptive servoventilation (ASV) normalises CSR in most patients. The Swiss Med Weekly said smw.ch/docs/ pdfcontent/ smw-12425.pdf 'While continuous positive airway pressure treatment (CPAP) is widely used to treat CSR, it has failed to improve overall survival of heart failure patients.' and 'However, the hypothesis that ASV might improve survival in CSR patients has to be proved in prospective studies in CPAP nonresponders. There is a lack of evidence on the use of bilevel devices in CSR. However, ASV has proven both to effectively treat CSR and to be superior to CPAP in respiratory and sleep parameters in short term and medium term studies. Nevertheless, data on the long term use and the influence on cardiac parameters are necessary.'
and
'Up to 50% of patients with heart failure suffer from sleep-related breathing disorders with CSR being the most frequent finding [4]. Unfortunately, CSR patients often do not present with
the typical signs as in OSAS. Fatigue and reduced exercise capacity are often leading symptoms of heart failure and are not brought together with sleep related breathing disorders. It has been shown that CSR is marker of poor prognosis in heart failure patients'
and
'Although CPAP is widely used in the treatment of CSR it has proved to reduce the numbers of apnoeas and hypopnoeas per hour (the AH index) only by 50% both in short and long term studies [21, 23]. Several other treatment options are under discussion: there are controversial results on the supplementation of oxygen during the night or the treatment with the carbonic anhydrase inhibitor acetazolamide [24–29]. Therefore, both approaches cannot reasonably be recommended with OSAS or CSA/CSR.
Three devices are available (AutoSet® CS by ResMed, BiPAP AutoSV® by Respironics, SOMNOVent CR® by Weinmann).'

I've been aware for many years that I seem to have some heart failure, judging by puffy feet and ankles etc, but I have never done anything about it as it seemed minor. However, if it might be part of a parcel of symptoms, I am beginning to think I should go and seek medical advice about possible heart failure ahead of trying to fix things with a CPAP in the absence of more information about what's really going on. This experience and information has shaken me somewhat into considering doing something about it. It has taken the sleep study and machine trial to expose the possible cause of years of overwhelming fatigue and sleepiness which nothing else has explained.

The machine I have - I don't think this will do me much good, and has already made me feel extremely unwell and completely interfered with my sleep, not just while I was wearing it but coping with the aftereffects. I guess I need to find out about an ASV, whatever that might be, and contact the salespeople at the 'shop'.

I have found out more in two days here than two weeks with the experts!

Thanks - until later.

[archangle]

Please fill in your equipment on your profile. There's a link in my signature line.

Unless I've missed something, you're getting way, WAY, ahead of yourself talking about CSR. Where did the idea you have CSR and heart failure? You really can't tell much about that from a CPAP machine.

Even the ankle bit isn't necessarily much of a sign of heart trouble.

However, it wouldn't hurt to go through "normal" screening for heart issues.

[Centralia]

Central Apnoea Search

thesleepsite.com /content/ view/76/91/

has some very interesting remarks on central sleep apnoeas.

Which patients with central sleep apneas are most likely to benefit from ASV?

-Patients with complex sleep apnea (central apneas emerging with use of CPAP or bilevel PAP).

-Patients with heart failure or atrial fibrillation who have central sleep apnea - with or without obstructive sleep apneas.

Do many sleep centers offer ASV titrations to their patients at this point in time?

-No, despite a number of studies published in the medical literature that convincingly demonstrate the dramatic effectiveness of ASV.

-In fact, for unclear reasons, a large number of established sleep centers do not attempt to treat central apneas at all. They still do not even offer trials of bilevel PAP with IMV for central apneas despite the fact that the latter have been available in the US since 1990. These centers simply focus on obstructive apneas and routinely prescribe only CPAP or straight bilevel (without IMV) machines. It is difficult to understand why they ignore central apneas, since they complicate positive airway treatment of obstructive apneas in 15-20% of cases and can cause severe sleep fragmentation to the point that patients simply abandon treatment.

-Only ASV reduced the number of episodes of apnea and hypopnea to normal, and ASV clearly was superior at reducing sleep fragmentation and increasing vital stages of sleep needed for proper rest. All patients preferred ASV to CPAP.

-Why do we use it so frequently? Because it seldom fails to control both central and obstructive sleep apneas. Furthermore, it tends to make breathing during sleep not just "better" but fully normal. In addition, the vast majority of patients who try adaptive servo-ventilation find it much easier to tolerate than CPAP, bilevel PAP and their variants--because it continuously adapts to their changing needs during sleep rather than forcing them to adjust to it. It is an extraordinarily smart and subtle treatment!


I'm about to give up on this machine; the specialist at the hospital seemed doubtful that a CPap would help, but I was keen to try. I am currently writing an email report to the machine suppliers to see if I can trial an ASV and am reasonably certain the answer is going to be no - they may be agents only for Respironics bog-standard units, but I hope I'm wrong there.


My problem is not mainly obstructive, that is only a small portion - it's the central apnoea and all that is associated with that which is the problem. I won't now fill in the details of the machine I have been trialling, though I appreciate the link - if I can get a different unit I will fill those details in. I have feared too often in the past that the weird sensation in my heart might be about to bring me undone to want to play silly things with a machine that interferes with its quiet operation. With all the information I've gleaned in the past few days, I have a different insight into half a century of symptoms. I'll make an appointment with my local GP, and also ask whether the sleep shop can offer me a different machine to trial.

All for now, and thanks again.

[Centralia]

Just a few unanswered points from previous posts, for which I thank you again - very reassuring and comforting.

Re the mask - I have no idea what it is - it was just handed to me. It's just like three strips of velcro-friendly spongy fabric with fasteners, and a nosepiece which inserts into an oval aperture; I suppose it could be gel, though I would have described it as soft plastic if I hadn't been browsing here so much in such ignorance.

Rejected machine is Respironics System One Remstar Auto A-flex. It will go back to the shop when I visit town on Wednesday, whether I get a replacement or not.

Archangle, I've made an appointment locally to bring up all the things I haven't been bothering to investigate, never having received answers when I did report them in early days. I've also made an appointment with the specialist. Amazingly, both will be this month!

Tetragon, you describe exactly how it felt - the air was cut off before I had finished breathing in. I presume it is AFlex, just from the name of the machine, but how she has set it up I don't know. She didn't enable humidity on the second machine, who knows whether she did on the first. It didn't seem to use much water! I did try the three settings, but even the one which seemed the least intrusive was too bossy and scary. I didn't' get the blast of air from the second machine, just acceptable flow interrupted by premature denial of air service. Short breaths, leading to - well, I wonder whether it was hyperventilation - in any case, my lungs were aching and my heart was pounding. It's a bit sad if my normal breathing is interpreted by the expert as absence of breathing needing a pressure pulse and a quick slap around the nostrils. I do think you are right, they must have been pressure pulses. I'm a bit upset that there was no information for me to browse through to understand any of this. What if people like you weren't on line?

Chunkyfrog, I do so agree, I should not have to follow a machine's idea of how I should be breathing. To be in charge, I had to blow into the darn thing quite strongly, and that settled its hash until the next breath, but I couldn't spend the night trying to outblow a machine! I told it I was in charge, but it just giggled loudly up my nostrils. There was no way breathing was comfortable for me on that machine, and it was determined not to follow my lead. The only time I held my breath was when I expected it to blast my nasal hairs to kingdom come, which it was quite willing to do. It wasn't fooled, it knew I was yellow. It sounds like a good idea to wear it while reading, but it was a horrible experience and I am beginning to believe it was just not the right machine for me. I'm divorcing it on Wednesday and don't I hope for a more compatible partner next time, if next time ever comes.

I'm not sure how to enter my diagnosis, but this is from my results sheet: Study results Hypopnoea 23.1 in total sleep; Obstructive o.2, Mixed apnoea 0.5, Central Apnoea 11.5, Hypopnea 10.8, Longest duration of apnoea 142 seconds, mild snore index. Minimum Sa02 while asleep 78, Maximum de-saturation 78%, 25 awakenings, number of arousals 109, respiratory arousal 11.0. REM sleep reduced (19.5% of total sleep time). So I understand that my brain failed to tell my lungs to function for over two minutes at a time. That made me take it seriously!

I emailed to say I was bringing the machine back on Wednesday, and enquiring whether there was an adaptive servo-ventilation machine I could trial.

[tetragon]

The machine's screen has four boxes on it. What is written on he upper-right box is which Flex type the machine is currently set to use (at least it is in non-pictogram mode). C-Flex+ and A-Flex are designed to drop the pressure when it thinks you're ending your inhalation, while C-Flex waits longer.

Unfortunately for you, if you want to try the older version of C-Flex, or disable it altogether, you need to be willing to enter clinician mode. I personally don't agree with this design choice, but I just use the machines.

[archangle]

You may have been given the sleep study "summary" report, so it may be lacking some data. There should be a detailed report with more data than the summary report.

However, can you figure out whether the 142 second apnea was obstructive or central? How many long apneas of what type did you have?

Have you gotten a copy of SleepyHead and looked at the results of your treatment? It will give you information about whether you're still having central apneas. It's like having a poor man's sleep study every night. If you're not using software, you're wasting your time and ours as well.

It's critical that you read the data from the CPAP machine you've been using and post the results before returning the machine you have. If nothing else, copy all the data from the SD card to a directory on your PC.

Once again, why do you think you have CSR? Central apena does NOT necessarily mean CSR.

If you're on insurance, you often have to "fail" CPAP and bilevel/BiPAP/VPAP before you can be considered for an ASV unit.