Getting "over inflated"

den942 wrote:They did tell me that sometimes after a central apnea ocurrance I had difficulty starting breathing again due to the obsrtuctive apnea. I guess that would be mixed apneas?

Sounds like it.

Can someone tell me which are the best DME providers??? Thanks!


"IMO it's a good idea to learn how to at least check the actual settings in your machine against those prescribed values. Not to sound overly harsh, but as ozij correctly points out, we have seen very many machines set up incorrectly by clueless DME providers. Then again we also have some DME providers who post here that are nothing short of superb IMO. I'd personally take Wulfman up on his typically generous offer for the clinician manual if I were in your shoes."

One advantage of commenting on machines one actually uses is being able to test out particular situations as well as glean lots of helpful insights from the nightly data.

So last night I did a couple of tests with the Bipap SV as one thought kept niggling me in regard to the situation described in the original posts.

We have another regular (haven't seen him of late) Dllfo, who has a couple of Bipap SV machines. Dave has often sent me data from his machines where he said it would go to 30 CMs and wake him up. I have long been trying to understand what could have been happening to him in that situation. Those who know him know he is a very rare & unusual case & perhaps should be on a high-quality ventilator rather than a consumer model.

My data - collected almost every night for the past 8 months - has never shown any tendency to raise the pressure unexpectedly - I can always see the graphs showing the PS kicked in slowly during periods of apparent hypopneas. It will go to IpapMax typically 7-12 times per night and I rarely get woken by it.

note for below para: 'cycling' means switching from epap to ipap to epap to ipap etc: at the current BPM rate ...

My machine is on BPM=AUTO vs your BPM=10. So last night while in bed, I did a couple of tests where I stopped breathing to see what the machine would do. In BPM=Auto mode, the machine is said to track my breathing rate the same way it tracks av peak flow (3 min window). What it did was start to cycle (as expected) - it went to ipap, then cycled back to epap then in the same time period cycled back to ipap (the normal process) BUT with approx 3 CMs higher pressure, then cycled back to epap then again in the time pattern back to ipap BUT bumped pressure even higher (approx 3 more CMs). So what that showed was that the machine when detecting zero flow (a central or an obstructive apnea will cause this) will cycle at the BPM rate & keep bumping up pressure - knowing dllfo's situation (he could stop breathing for 60+ secs - have seen this in his data. My IpapMax is set to 20 CMs so if I were to have a non-responsive central (dllfo's speciality) then pressure would go up to IpapMax in small bursts as the machine cycled to ipap while trying to get my respiration started again.

So on reflection, I can see to possible causes as to why your machine might start 'puff'ing you.

1) Youe epap is too low & you are having large obstructive apneas
or
2) You are having (like dllfo) long unresponsive centrals

My guess ? - can't say - but if your RT says you have very unusual respiration you might be just like dllfo. The data could help greatly in working out what is happening in your sleep. Again, without it we are merely speculating, guessing & generally not getting very far.

Cheers

DSM

dsm wrote:One advantage of commenting on machines one actually uses is being able to test out particular situations as well as glean lots of helpful insights from the nightly data.

So last night I did a couple of tests with the Bipap SV as one thought kept niggling me in regard to the situation described in the original posts.

We have another regular (haven't seen him of late) Dllfo, who has a couple of Bipap SV machines. Dave has often sent me data from his machines where he said it would go to 30 CMs and wake him up. I have long been trying to understand what could have been happening to him in that situation. Those who know him know he is a very rare & unusual case & perhaps should be on a high-quality ventilator rather than a consumer model.

My data - collected almost every night for the past 8 months - has never shown any tendency to raise the pressure unexpectedly - I can always see the graphs showing the PS kicked in slowly during periods of apparent hypopneas. It will go to IpapMax typically 7-12 times per night and I rarely get woken by it.

note for below para: 'cycling' means switching from epap to ipap to epap to ipap etc: at the current BPM rate ...

My machine is on BPM=AUTO vs your BPM=10. So last night while in bed, I did a couple of tests where I stopped breathing to see what the machine would do. In BPM=Auto mode, the machine is said to track my breathing rate the same way it tracks av peak flow (3 min window). What it did was start to cycle (as expected) - it went to ipap, then cycled back to epap then in the same time period cycled back to ipap (the normal process) BUT with approx 3 CMs higher pressure, then cycled back to epap then again in the time pattern back to ipap BUT bumped pressure even higher (approx 3 more CMs). So what that showed was that the machine when detecting zero flow (a central or an obstructive apnea will cause this) will cycle at the BPM rate & keep bumping up pressure - knowing dllfo's situation (he could stop breathing for 60+ secs - have seen this in his data. My IpapMax is set to 20 CMs so if I were to have a non-responsive central (dllfo's speciality) then pressure would go up to IpapMax in small bursts as the machine cycled to ipap while trying to get my respiration started again.

So on reflection, I can see to possible causes as to why your machine might start 'puff'ing you.

1) Youe epap is too low & you are having large obstructive apneas
or
2) You are having (like dllfo) long unresponsive centrals

My guess ? - can't say - but if your RT says you have very unusual respiration you might be just like dllfo. The data could help greatly in working out what is happening in your sleep. Again, without it we are merely speculating, guessing & generally not getting very far.

Cheers

DSM

I was told my oxgen level dropped to 38% at times. I would guess that was during a central occurance.

What does it take to get the data from my machine?

Den942, you're being wooed since this thread was "getting nowhere"!

Several times I have woke up unable to exhale because my lungs were full but the machine was trying to force air into me to get me to breathe.

Time to figure out which apnea types you're having with the above description of being unable to exhale because your lungs are full. The above are not apneas, although you may very well have outstanding apneas or even wrong settings.

den942 wrote:What does it take to get the data from my machine?

But that is a great idea! A USB reader and Encore viweing software sold at CPAP.COM.

-SWS wrote:Den942, you're being wooed since this thread was "getting nowhere"!

Several times I have woke up unable to exhale because my lungs were full but the machine was trying to force air into me to get me to breathe.

Time to figure out which apnea types you're having with the above description of being unable to exhale because your lungs are full. The above are not apneas, although you may very well have outstanding apneas or even wrong settings.

den942 wrote:What does it take to get the data from my machine?

But that is a great idea! A USB reader and Encore viewing software sold at CPAP.COM.

I have no idea what you mean but what I said was correct. This was discussed way back in the "breath stacking" part
of this thread about page one. If I do not breath for a certain length of time I get a puff of air from the machine. If
the machine don't get the response it wants, I get another, stronger puff of air. The puffs keep getting stronger until
I wake up or the machine gets the response it wants. And, yes, it does inflate my lungs and keeps trying more till it
gets a response it wants. I wake up with my lungs full and the machine is still trying to puff more air into me.
I have central and obstructive apneas So, explain to me what you mean in your comments.

Den942, that's only me me humorously chiding Doug--my good friend of several years now. Doug's right about viewing the data to get a better idea of what's going on. Here's the link to what you would need to pull and display your machine data:
https://www.cpap.com/productpage-bundle.php?BundleID=64

That's a proprietary USB card reader that sometimes shows up much cheaper on the likes of eBay etc.---beware that it needs to be Respironics compatible. The Encore Viewer software is entry level software that Respironics intends for patients. They also offer Encore Pro, which is slightly more capable and intended for clinicians.

If you pull your data and post the results, people will gladly help interpret those results. Those discussions will be educational at the least. Quite often we do find terrible machine settings from professionals. That's the "proceed with caution" point in my earlier message for anyone with health complications. Quite often we get stumped---and for very good reason: we're not trained and this is highly challenging subject matter. Essentially we have two "black boxes" in this equation of neurology and biophysics: 1) that black box driven by an ASV algorithm in your case, coupled to 2) an infinitely more complex and vulnerable black box comprised of highly enigmatic stimuli/response based physiology. My philosophy is to try and get the doctor or clinicians involved when we think something's wrong with our data. I personally don't push that same philosophy to garden-variety obstructive apnea, for which this message board has a great track record of quickly optimizing treatment. Garden-variety obstructive apnea poses few risks (short of concomitant health disorders) and is far less challenging to treat than complicated central-disease related dysregulation. The other philosophy on the board is to tweak settings in almost all cases---including cases of highly complex central dysregulation----without always getting health professionals in the loop.

Most importantly, I would suggest that people subscribe to their own philosophy. This is a new branch of medicine, and quite frankly the health profession seems to get the settings wrong again and again for a variety of reasons. That challenging situation (the situation of both immature and overly challenging sleep medicine---and not inherently negligent people) literally places patients in a hell of a treatment dilemma in my opinion. The more complicated the health profile, the more tweaking caution one should employ IMO. Some patients never manage to find suitable professional care, and then manage to get their treatment straightened out on this message board. It shouldn't be that way but it is. What a tough dilemma for many patients.

Proceed with caution however you decide to treat your health and good luck! By all means be your own best health advocate as you see fit.

Den942,

Don't worry about the banter between us participants, we do like to pull eachothers tails every now & then

SWS is spot on in covering these points

> the professionals in this industry are learning as much as their patients & some times one lot gets ahead of the other
> machines can be set up incorrectly by learning professionals and in the garden variety cases we here can help very quickly
> for complex cases (clearly yours) the wise among us tread very very carefully. Data helps enormously

For me, actual experience adds a deeper dimension (& in this area we pull each other tails ). I will rarely ever make statements of fact on the way a machine behaves if I haven't tried it out whereas some other folk have no such inhibitions - SWS is one of the wiser heads & will usually qualify his comments as being opinion when that is what he is offering.

All in all, between us, we have much to offer those who seek help.

Following on your comments re the increasing 'puffs', I have these questions come to my mind ...

> how does someone know the machine is increasing the ipap pressure each cycle unless they are awake
> if awake, why aren't they then breathing
> if not then the description has to be impressions rather than objective data
> dllfo only ever knew that he would wake with the machine going full pressure

What I believe dllfo really meant to say was that he awoke with the machine cycling and on ipap cycle it was at full IpapMAX pressure. Unlike errant AUTOs, the SV machines don't go to max pressure and just stay there. Sometimes it is difficult trying to take what someone describes & trying to work out from that what they really meant or should be saying. The whole respiratory process & way the machines function, can be complicated.

The data from the machines, when understood by anyone familiar with what it means, is very very helpful in stepping around our guesswork.
There are lots of really knowledgeable experts here on cpaps & apaps & now the bilevel expertise among us is growing as more minds apply themselves to the data and the situations we experience. Many RTs rely on theory as not all of them actually use xPAP machines. But RTs have access to actual patients, clinical advice & reports based on volume data being fed to them from associations & the vendors. They are a bit disadvantaged when a new type of machine comes along & they have to interpret what it really does in practice & what side effects occur. They don't all (by any measure) actually try the machines, they tend to experiment with them on the likes of us and based on the info they are provided by the manufacturers.

So am saying - hang in there & if it is important to you, get the card reader & the software & let us get access to your data then we will have real meat to chew on.

Re your experience of waking & feeling full of air & the machine trying to push more in, just blow hard (through your mouth in you have a F/F mask or your nose if nasal mask) - the machine *WILL* switch back to the original (in your case quite low) epap pressure as it is a synchronous machine & it is driven by your breathing. If you find you are unable to do this then that may be a symptom of something more serious with your respiratory drive. SWS is very knowledgeable in that area.

DSM

Another thought re 'breath stacking'.

The Bipap SV will increase the ipap pressure when cycling in response to a central but if you take a breath the pressure increase from cycling ceases and the machine reverts to epap/ipapMin & PS support to get you back to target peak flow. If the pressure is increasing during cycling, it is because you are not breathing at all (zero flow) - the machine says 'this user is still having a central' and it uses its algorithm to try to resolve it (cycling & bumping ipap each failed cycle). So, if you breathe during a cycling episode the machine says the central just ended.

What you describe comes across as a central related and serious failure to breath even when the machine is giving its best shot. It is doing what it can & if that isn't fixing the problem then some other therapy may be needed. The machine can have IpapMAX set as high as 30 CMs but that really needs expert RT involvement.

DSM

-SWS wrote:Den942, that's only me me humorously chiding Doug--my good friend of several years now. Doug's right about viewing the data to get a better idea of what's going on. Here's the link to what you would need to pull and display your machine data:
https://www.cpap.com/productpage-bundle.php?BundleID=64

That's a proprietary USB card reader that sometimes shows up much cheaper on the likes of eBay etc.---beware that it needs to be Respironics compatible. The Encore Viewer software is entry level software that Respironics intends for patients. They also offer Encore Pro, which is slightly more capable and intended for clinicians.

At that price I won't be owning one any time soon. I guess I'll check e-Bay.

Another option might be to see of you can get your DME to print out hard copies of the detailed reports for you and your doctor to view.

-SWS wrote:Another option might be to see of you can get your DME to print out hard copies of the detailed reports for you and your doctor to view.

My first ENT specialist said I had allergies. My Neurologist, when told the same symptoms as I told the ENT, suggested the
sleep study but is not a sleep specialist. My machine was supplied by the hospital the morning after the second night I spent
in the sleep clinic. The machine is from a California based company and I'm in Ohio. So basically everything is a screwed up
mess. I don't really have a doctor that I'm seeing for my sleep disorder. I'm getting the feeling I should be finding one.
The second ENT specialist suggested the surgery I had when given the same film as the first ENT. He removed three polyps,
reshaped some turbinates, and fixed up my septum. I've been breathing great since. Before the surgery had I been forced to
breathe through my nose only, I don't think I could have got enough air to survive.

dsm wrote:The Bipap SV will increase the ipap pressure when cycling in response to a central but if you take a breath the pressure increase from cycling ceases and the machine reverts to epap/ipapMin & PS support to get you back to target peak flow. If the pressure is increasing during cycling, it is because you are not breathing at all (zero flow) - the machine says 'this user is still having a central' and it uses its algorithm to try to resolve it (cycling & bumping ipap each failed cycle). So, if you breathe during a cycling episode the machine says the central just ended.

I am no expert in Bipaps, but these statements strike me as a bit weird: why is the Bipap increasing the inhale pressure in response to a central? I understand that the bipap has different inhale and exhale pressures to begin with and is much more complicated than an APAP, but I thought that one of the the root causes of all central's was too high pressure - so is the problem that the Bipap can't differentiate the central from an obstruction - or is the problem something way beyond my understanding (and that's pretty likely too )?

Echo, a BiPAP "SV" machine is a very different animal from just a regular bipap.

An SV machine uses rapid, repeated switching back and forth between IPAP/EPAP to try to "nudge" a person who is already having a central apnea to resume breathing on their own. If a quick little (a little more IPAP during the rapid IPAP/EPAP switching) nudge doesn't do it, the SV machine uses higher and higher IPAP pressure during the repeated switching back and forth -- to try to get the brain's attention, so to speak.

SV machines do that very well for people with central apneas. Nudging them to resume breathing. It's a very specialized machine when it comes to centrals.

Rested Gal has nailed it.

The way that Centrals are dealt with in a normal Bilevel is using the epap-ipap cycling at a particular rate (determined by the Breaths-per-minute timed rate or the Breaths per minute back-up rate, depending on how the machine was set up).

The Bipap Sv does the same cycling using the same settings as the normal timed bilevel but adds the ipap boost where it bumps pressure each failed cycle (that is if it didn't get you breathing 1st go it bumps & tries again.

What many people confuse re this using pressure to treat centrals is that an Auto just bumping up pressure (not being a bilevel, a normal Auto only has one pressure) is going to do more harm than good. It is the 2 pressures being cycled that hope to clear a central.

Restated simply

1) increasing using one pressure (no bilevel) on its own compounds a central (what Autos do)
2) cycling between 2 pressures if the gap is set up correctly, will more likely have the effect of getting the user breathing again

It is a common misunderstanding.

DSM