Too many Apneas, please help interpret chart

[azmanatheart]

Hi,

I'm sorry to say that I'm having a horrible time controlling my OSA despite my best efforts, and I'm hoping that there is something my chart that might help someone suggest some other course of action. I haven't been able to get my AHI below 10, it seems to average close to 15 -17 and there are some nights where it is in the 20's, althogh in the lst week i've had 2 nights below 15. My sleep DR. now says my apnea appears is NOT resolvable by XPAP when I'm sleeping on my back, and that I have to only sleep on my side. I'm not overweight or all, but have been told I have a narrow chamber in my throat and am a 'skinny Apneak'. (I've been called worse). I feel as though I may have brain damage with all the physical and cognitive issues I have i.e stumbling, clumbsiness, severe daytime sleepiness, inability to focus, depression, etc. You all know the list if you're on this forum, but it's especially discouraging to be on a new machine with very high compliance for almost 2 months and to be getting worse and not better.
I'm using a Remstar MSeries Auto in Auto mode with limits set to 8 and 16.5. My titrated level was 16. My mask leaks a lot but I've managed it as well as possible with the Resmed Quatro and Macks silicone putty to minimize the leaks. The nice DME lady got very upset that she could not find any mask that did not give large leaks without the putty.

My doctor is frustrated, he feels as though 'I'm doing better' but I can tell you that I don't feel better. His answer is more Provigil, on top of the 6-8 cups of coffee I drink a day. It takes me about 60 -90 minutes every morning to wake up enough to go to work, and then I can only get about 3-4 hours of clarity before going into Zombie mode. I'm rambling and not being specific here.

Can someone possibly look at my chart and tell me something that might be helpful, something that may help the therapy work better. I still find it very hard to understand why I had 52 years without any problems, then need to go on CPAP at 8, and then within 2 years the CPAP can't even go high enough to keep my from suffocating when I'm on my back??

Thanks for all the good info and support so far. You're all great people.

Thanks,
Jeff

[PolyMar]

Do you know what your pressure parameters are set to in the auto mode? You might try getting the parameters adjusted to something like 13cp - 18cwp, if you can get comfortable with the low pressure at 13cwp by the time your ramp is up. You could also try running the blower at 16cwp and see if that eliminates the apnea.

[Bluebonnet_Gal]

I'm no medical expert, but with a titrated pressure of 16, it seems like a lower pressure of 8 on an auto is too low. The machine has a long way to go from 8 up to 16 to prevent apneas. By the time the machine gets there, an apnea may have occurred for 10 seconds or more. I've heard suggested on here as a "rule of thumb" that when using an auto machine, set the lower pressure 2 points below your titrated pressure and the max pressure 2 points above your titrated pressure.

[Bluebonnet_Gal]

The post above mine shows

PolyMar
Also Posted As:
(Bluebonnet_Gal)

Very strange. That's not my post. Could it be a glitch since we posted very close to the same time?

[ww]

The auto is doing you no good because of the mask leaks! You would be much better off at your original pressure of 16 cm run in CPAP mode while you figure out where your mask is leaking and why. That mask should show a leakage that is a pretty straight and steady line with a leakage of approx 40 lpm. Some Quattros have to have a piece of teflon tape used to seal the swivel. Some people have had to use a piece of moleskin across the bridge of your nose to stop leaks into your eyes and keep the mask from hurting the bridge of your nose. Re-read or look at the DVD that came with your mask and follow it very carefully. If leaks persist, tighten the bottom strap 1/4 inch at a time until they stop.

[azmanatheart]

The auto is doing you no good because of the mask leaks! You would be much better off at your original pressure of 16 cm run in CPAP mode while you figure out where your mask is leaking and why. That mask should show a leakage that is a pretty straight and steady line with a leakage of approx 40 lpm. Some Quattros have to have a piece of teflon tape used to seal the swivel. Some people have had to use a piece of moleskin across the bridge of your nose to stop leaks into your eyes and keep the mask from hurting the bridge of your nose. Re-read or look at the DVD that came with your mask and follow it very carefully. If leaks persist, tighten the bottom strap 1/4 inch at a time until they stop.

As you can see from the chart, the leaking really only occurs when the pressure rises above 11-12cm. It's not leaking when I fall asleep and not from the swivel. I use moleskin on the forehead pads and on the bridge of my nose becuase I have to tighten the mask more than I'd prefer, but it is the only way to stop the leaking. Ironically, the Sleep DR. said he didn't thin that leaking was a problem at all, and the whole point of that visit was becuase the DME could NOT find a mask the would not leak on my skinny face, tried the Quatro, the Comfort Gel and it's stiffer earlier version. I wash my face and mask every night, reshape the Macks silicone or replace it. I really don't know how muchof a problem my leaks are on the actual therapy, although I know my eyes are all messed up in the morning from blowing air.

[jules]

there is a leak problem - notice how the clusters of events come with oscillations of the leak graph - the machine probably will only record one thing at a time and it picks what it sees as worse at the time - sometimes it flips the coin and indicates leak, sometimes it comes up event

fix the leaks then worry about the rest

[Hawthorne]

You may well have positional sleep apnea and that means you must sleep on your side by using a pillow or a backpack of some sort to keep you there.

If you are sleeping on your side and this is a typical night on your side then your minimum pressure is way to low! If you are sleeping on your back it is also way too low!

I see your 90% pressure is 16 cm (meaning you spent 90% of that night at or below 16 cm). You say that was also your titrated pressure.

With your minimum now set at 8, it takes way too long to get to the pressure that will give you proper therapy.

In my opinion (and I am not a medical person of any kind - just someone with sleep apnea) your minimum pressure needs to be way higher. Your maximum has to be higher as well since you are bumping up against the maximum a lot of the night.

I don't know if you can stand to be at a higher minimum but, if it were me, I would set the minimum at 10 cm or even 12 cm would be better and put the maximum at 20 cm for a start. I think you can stand a higher minimum as I look at your pressure (top section), your leak, and the apneas.

In my opinion, your minimum is going to have to go higher than 10 cm or even 12 cm but you may have to work up, gradually, to a better minimum for you. Your minimum should eventually be maybe around 14 cm to 16 cm. I don't think you should jump up there right away. I am suggesting you start with a minmum of 10 cm or 12 cm and a maximum of 20 cm (as high as this machine will go) and, after a few nights see what your data looks like. You could use the ramp feature to get you to sleep before the pressure gets high.

It could also be that you should be on a bipap with the high pressures but you don't know, at this point how high your pressure will go.

It also could be that you should set your machine in cpap mode at your titrated pressure of 16 cm.

Do you know if you had centrals in your sleep study? I don't think this data shows any.

You do have a lot of leaks going on as well and that may be responsible for some of your apneas. You do have to get those leaks under control. The leak line is not too bad for some of the night but there are those large spikes. Good thing about the leaks is that you are not having any large leaks, at least you weren't this night.

Remember your pressure setting has nothing to do with the severity of your sleep apnea. It is just the pressure that is needed to keepYOUR airway open.

Someone else who has been interpreting data longer than I have will hopefully reply!

These are my thoughts, as I look at that data.

I see several people have replied while this slow typist has been typing! I expect a lot of us are saying some of the same things. I dind't read them all. I'm just going to post too and you'll have a number of things to consider from all who post.

[azmanatheart]

there is a leak problem - notice how the clusters of events come with oscillations of the leak graph - the machine probably will only record one thing at a time and it picks what it sees as worse at the time - sometimes it flips the coin and indicates leak, sometimes it comes up event

fix the leaks then worry about the rest

I really don't what else to try in a FFM that I haven't already tried. The silicone putty seemed to have it pretty well under control but within 2-3 days, something in the putty causes the edges of the mask gasket to lose it's shape and rigidity. I wan't sure if it was the putty, so I tried it on the ResMed Comfort Gel that I wasn't using that leaked even worse, and the gasket on that went limp the 1st night. So, unless I win the lottery and can afford a new gasket or insert every other night, I'm going to have to give uup the putty and find something else to get a better seal.

I'm imagining some type of gel that could be applied to the mask as it is put on and it molds to the contour of your face and sets up in a minute or so, sort of like when a dentist takes a tray to make an impression of your teeth. Find the right material, and help me and get rich on cpaptalk.com marketing.

Seriously, I've tried the little denture adhesive strips, and I can't find anyone who makes custom masks, not that I could afford one. I did see a webpage for a sleep doctor on the West Coast who makes custom molded masks for her patients, but that's Ca and I'm NJ.

IDK!?
But thanks for the input, I know you're right about the leaks, the DME knows you're right, but my Sleep Dr, what's up with him?

[PolyMar]

Have you thought about trying ResMed's Active Lt with a chin strap? I love it and have fit it for many people since it came out a couple of months ago who also report liking it. You can wear it very loose and it still holds a very nice seal.


P.S. BBG I am not sure what is going on with the mixed up names, it started the other night.

[builta]

there is a leak problem - notice how the clusters of events come with oscillations of the leak graph - the machine probably will only record one thing at a time and it picks what it sees as worse at the time - sometimes it flips the coin and indicates leak, sometimes it comes up event

fix the leaks then worry about the rest

I really don't what else to try in a FFM that I haven't already tried. The silicone putty seemed to have it pretty well under control but within 2-3 days, something in the putty causes the edges of the mask gasket to lose it's shape and rigidity. I wan't sure if it was the putty, so I tried it on the ResMed Comfort Gel that I wasn't using that leaked even worse, and the gasket on that went limp the 1st night. So, unless I win the lottery and can afford a new gasket or insert every other night, I'm going to have to give uup the putty and find something else to get a better seal.

I'm imagining some type of gel that could be applied to the mask as it is put on and it molds to the contour of your face and sets up in a minute or so, sort of like when a dentist takes a tray to make an impression of your teeth. Find the right material, and help me and get rich on cpaptalk.com marketing.

Seriously, I've tried the little denture adhesive strips, and I can't find anyone who makes custom masks, not that I could afford one. I did see a webpage for a sleep doctor on the West Coast who makes custom molded masks for her patients, but that's Ca and I'm NJ.

IDK!?
But thanks for the input, I know you're right about the leaks, the DME knows you're right, but my Sleep Dr, what's up with him?

Please list the FFMs that you've tried.

[ww]

The biggest problem with leaking masks is that they are not the right size. Macks putty should not have to be used on a Quattro to get a good seal. You are getting a lot of leaks over 75 lpm and you can feel those whistling, farting, and causing snoring noises, simply by running your fingers around the edge of the mask. If the mask is too large, it will leak into your eyes badly and the only way to slow it down is to tilt the mask back until it touches the bridge of your nose, then protect the bridge with moleskin. Again, you are getting no advantages from an auto machine, and you need to run it in cpap mode at about 16cm until you get the leaks stopped. If the sleep doctor doesn't think the mask is leaking, have him feel around the edges of your mask while you are sleeping.

[DoriC]

Not to confuse you more but have you tried the UltraMirageFF? My husband has had the most success with that one. Also make sure you're using the correct size.

[ozij]

I've seen more than once that when the minimum pressure it too low, the rest of the therapy gets messed up.

When your pressure it too low, you have apneas. That may cause a number of thing at once:
Restless movements that are a result of attemts to breathe
Change of position
Mask dislodgemtent
Pressure rises.

Looking at your chart, I'd say: raise your minimum - 12 or more.
Look at hour 2-3 - that mess of apneas and leaks could be result of the pressure having dropped, since the machine considered it save enough to drop after the quiet time that preceded it - apneas casue resetlesness, etc.
Look at hour 3.5 to 5: The machine started dropping pressure, a flow limitation sent it up again - and you had some quiet time.
The machine informs you that you spend only 10% of you time at a pressure that is lower than 16. That fits in with your titrated level - and at 16, your doctor should to start thinking of a Bi-Leverl machine - not about provigil.

With a titration of 16, putting you at a minimum of 8 on the auto is asking for trouble. Your sleep doctor has shown in the past, when he asked for a data download from an S7 machine that his knowledge of machines is questionable - and I am being polite.

I posted the following on January 25, in response to your request for help. I am adding emphasis to some things you may have missed then:

He prescribed my level to be raised to 16, and told me to go to the DME who had sold me the Resmed S7 and have the data downloaded and the machine raised to 16 and use a full face mask. I went to the DME and they said that the machine had no download or recording capabilities, and that 16 was rather high, that I should ask the doc to write a script for a new machine with data recording. It's been 6 weeks since my Sleep Study, and 4 weeks since the Sleep Doc basically told me that I was going to have a heart attack, stroke or whatever if I did not get used to the new levels. THe insurance company and the DME would mot respond to my calls, but I knew that meant that they would not pay for a new machime, even if the doctor ordered it, even if he asked for date, because the sleep study report said that my cpap study was a 'success' and that I tolerated 16cm for 45 minutes.

"Tolerating" 16 for 45 minutes at the sleep study is not proof it will/can be tolerated all night long - and some insurance companies even insist on trying fixed pressure therapy at the higher pressures before they OK a machine that supplies different pressures for inhale (high) and for exhale low. You seem to need that kind of machine, called a "bi-level" or BIPAP (BPAP or VPAP the latter 2 being trade names for that type).

The guidelines published by the American Academy of Sleep Medicine http://www.aasmnet.org/Resources/Practi ... essure.pdf are very clear about that:

4.5.1 While the literature mainly supports CPAP therapy, BPAP is an
optional therapy in some cases where high pressure is needed and
the patient experiences difficulty exhaling against a fixed pressure
or coexisting central hypoventilation is present (Guideline).

You are definitely one of those "some cases".
Ask you doctor for a bi-level prescription - and you can then buy an automatic bi-level machine on line. The insurance company and the DME won't move unless the sleep doc changes the Rx. The sleep doctor may want a "bi-level" titration study to set up your bi-level titration - but he may also accept the fact that you can do your own titration with the help of the automatic machine and its data - if he refuses to Rx a bi-level I'd look for another doctor.
It is very sad to see that your mouth breathing was identified during your first sleep study, yet someone ignored it, and supplied a nasal mask. While the therapy's formal name is "Nasal Continous Positive Air Pressure" that does not imply a nasal mask.

So:

1. Go back to the sleep doc and complain vociferously about your intolerance for the high pressure.
2. Ask the doctor about scripting you a bi-level automatic machine
3. If he refuses tell him he'll be responsible for you heart attack - and change doctors.
4. With script in hand, contact your insurance to see if they are ready to reimburse you for buying online, make it very clear to them, in writing how much money they would save by paying the online price instead of a DME price. (Other can give you more detailed info about this than me).

All of the above assumes you have regular OSA -severe and in need of high pressure. I also assume those 19 central apneas in the first titration were the result of arousals.

However, since those central apneas may be an inidcation having complex sleep apnea -- where centrals appear under cpap - having the results of your new study is important - because that may indicate you need a new titration - on either a bi-level, or even on a third type of machine, an ASV one.

So meanwhile, until you have the results, or a bi-level, (even a loaner, a trial one) try raising your pressure gradually - at about 0.5 cm/h2o per week, or even 2 weeks (though I hope you have a bi-level machine before you finish that process). Some of us need a gradual process of getting used to higher pressures.

Hang in there - things will work out.

O.

O.

[rested gal]

I see your 90% pressure is 16 cm (meaning you spent 90% of that night at or below 16 cm). You say that was also your titrated pressure.

With your minimum now set at 8, it takes way too long to get to the pressure that will give you proper therapy.

Looks like the minimum pressure is set at 9, but I agree... 8 or 9.. either one is too low and would cause the machine to take wayyyy too long to move up there when 14, 15, or 16 are needed.

In my opinion (and I am not a medical person of any kind - just someone with sleep apnea) your minimum pressure needs to be way higher. Your maximum has to be higher as well since you are bumping up against the maximum a lot of the night.

I'm not a medical person either, and I agree on both counts. Especially about raising the minimum wayyyyy higher.

I don't know if you can stand to be at a higher minimum but, if it were me, I would set the minimum at 10 cm or even 12 cm would be better and put the maximum at 20 cm for a start. I think you can stand a higher minimum as I look at your pressure (top section), your leak, and the apneas.

In my opinion, your minimum is going to have to go higher than 10 cm or even 12 cm but you may have to work up, gradually, to a better minimum for you. Your minimum should eventually be maybe around 14 cm to 16 cm. I don't think you should jump up there right away. I am suggesting you start with a minmum of 10 cm or 12 cm and a maximum of 20 cm (as high as this machine will go) and, after a few nights see what your data looks like. You could use the ramp feature to get you to sleep before the pressure gets high.

The only thing I'd differ on is, I wouldn't work up gradually. Given the extreme daytime sleepiness Jeff is fighting, I'd go for therapeutic pressure now. I'd do one of these things now:

1. Keep the machine in auto mode, but set it to work like a straight CPAP by setting the min and max pressures the same. At a pressure of 16 that the sleep study came up with.

or

2. Keep the machine in auto mode, set for a range of 14 (or 15, or 16) to 20. Set the minimum pressure near or at the prescribed single pressure from the sleep study (pressure of 16) so that the machine can do a better, quicker job preventing events instead of the machine trying to play slow catch-up and losing the race.

It could also be that you should be on a bipap with the high pressures but you don't know, at this point how high your pressure will go.

Actually, I'd want to be on bipap even if the pressure doesn't have to go a lot higher. But, if I went to bipap, I'd still want the "lower" pressure setting (EPAP..the exhale pressure, in the case of a bipap machine) to be set up very close to, or at, 16. Perhaps bipap set for IPAP 18 / EPAP 14 for starters -- gather some data and see how that looks.

It also could be that you should set your machine in cpap mode at your titrated pressure of 16 cm.

Good idea. Instead of "cpap mode", I'd use auto mode with both the min and max set at 16 cm. It would "treat" as if it were straight cpap then, but would still gather "flow limitations" data, which is the only data that would be missing if set for just "cpap mode."

Do you know if you had centrals in your sleep study? I don't think this data shows any.

Right. The machine won't show centrals. If a few showed up, no big deal. If there had been a significant number, let's hope the sleep doctor was aware. It's always good, though, to get the full NPSG (nocturnal polysomnogram) report...not just the doc's summary page about the study.

You do have a lot of leaks going on as well and that may be responsible for some of your apneas. You do have to get those leaks under control. The leak line is not too bad for some of the night but there are those large spikes. Good thing about the leaks is that you are not having any large leaks, at least you weren't this night.

It might be easier to get the mask sealing better if you are working on it (puttying it, adjusting it, etc.) at the pressure it's going to have to withstand some or most of the night -- at 16. Getting it to fit and seal at a starting pressure of that minimum of 9 is one thing. Getting it to seal at 15 or 16 can be a whole other ballgame.

I'd work on "fitting" the mask while on your back, with mouth hanging open -- which is probably what happens when you sleep. When the jaw drops wayyyy down with an open mouth, the whole fit of a FF mask can change drastically. The area on both sides of the open mouth sinks in. And gravity is changing the geometry of the face when you are laying down, especially on your back. Working on getting it "leakproof" while sitting up on the side of the bed at a pressure of 9 and with mouth closed or just barely open won't be anything like working on the leak situation during worst case scenario -- on your back, mouth hanging completely open, and a pressure of 16 blowing in.

I'd also think about trying the ResMed Ultra Mirage FF mask in several cushion sizes, including the "shallow" shape cushion in various sizes. The UM FF mask works well for many people. I'm not sure the newer Quattro is really an improvement on that older tried and true FF mask. But everyone is different, so one FF mask can always work better than another -- Quattro is the ticket for some, and Ultra Mirage FF for others.

Couple of things you might try with your current FF mask:

1. Use a chin strap. If it's the jaw dropping down too much, changing shape of face around the mouth, keeping the jaw up some might help. Doesn't have to be so tight that you can't mouth breathe easily within your FF mask. Just keep from having so much of a jaw drop during the complete relaxation of sleep.

2. Put an extra strap (like an Ace bandage or...the leg cut off a pair of tights...anything soft and stretchy) around the front of the mask, tied behind your head with a flat "double start knot":
DoubleStart Knot How to tie a flat knot behind head when using a homemade strap.
http://www.fieggen.com/shoelace/doublestartknot.htm
To keep the extra strap from sliding up or down on the front of a FF mask, put some adhesive backed velcro "dots" or strips on the plastic front to make the fabric catch and not slip. It's amazing what a homemade extra strap across the front can do for many masks to steady them in place. The extra strap doesn't have to be very tight. Just "being there" can help stop leaks, much like when you press your fingers lightly against the front of a mask to stop a leak.

If not doing this already, you might want to think about using some kind of hose hanging rig to prevent the main air hose from tugging on the mask when you turn over or move your head.
LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

Remember your pressure setting has nothing to do with the severity of your sleep apnea. It is just the pressure that is needed to keepYOUR airway open.

Right. Absolutely right.

ozij finished her post while I was still typing. Reading ozij's comments now, I agree so much with this:

at 16, your doctor should to start thinking of a Bi-Leverl machine - not about provigil.

With a titration of 16, putting you at a minimum of 8 on the auto is asking for trouble.

and with this:

All of the above assumes you have regular OSA -severe and in need of high pressure. I also assume those 19 central apneas in the first titration were the result of arousals.

However, since those central apneas may be an inidcation having complex sleep apnea -- where centrals appear under cpap - having the results of your new study is important - because that may indicate you need a new titration - on either a bi-level, or even on a third type of machine, an ASV one.