I give up!!

And, anytime someone is trying to evaluate their therapy and making tweaks to improve it instead of giving up is a good thing.


Den

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At least one interesting thing in that thread Den.

chefmate wrote: I was not able to fall asleep so got up to take Benadryl.

Doctor recently prescribed nuvigil for daytime sleepiness. Its only making my anxiety worse.

So he is having trouble falling asleep and he is taking Nuvigil? That stuff can absolutely wreck your sleep and leave you exhausted the next day. The half-life will vary from person to person and it often gets very long.

My advice is to leave the pressure where it was prescribed, wean off Nuvigil with doctor's consent and get on a strict sleep hygiene programs including regular moderate exercise and a good diet.

I think he is on a wild goose chase for flow limitations and new pressure settings.

He says he is having trouble falling asleep - Auto pressure changes have nothing to do with that.

And this issue of great trouble getting the mask adjusted may be a second big problem.

ChicagoGranny wrote:

Wulfman... wrote:Good suspicion and good plan!

robysue wrote:Your hypothesis that the sudden, fluctuations in pressure may be disturbing your sleep is a GOOD starting assumption. Some people do much better on fixed pressure than on APAP. Since your 95% is 12.96cm, it is reasonable to try CPAP at 12.8cm.

I think this is presumptuous without seeing two or three days of details. Has he posted them in another thread?

As has been repeated on here many times, the 95% statistics is often meaningless. For all we know, the machine ran steadily at 7.0 most of the night.

ChicagoGranny,

We have to start somewhere. And the OP specifically said in this thread immediately before Den and I replied:

chefmate wrote:I am going to set the APAP in CPAP mode at a single pressure setting of 12.8(my 95 percentile pressure is 12.96). I have a feeling that arousals related to sudden fluctuations in pressure might be the root cause of my sub-optimal therapy.

It is known that some people do indeed have arousals from fluctuating pressure. And since chefmate believes that might apply to him, it's well worth seeing if switching to straight CPAP is any easier to tolerate. Not everybody does well with APAP and it's an avenue that is well worth pursuing. It's also apparently something that chefmate has NOT yet tried. And when you're frustrated because everything you seem to try doesn't seem to do anything, it's reasonable to start thinking out of the box.

As for where to set the fixed pressure? The 95% pressure level is the usual accepted starting point when docs are looking at machine generated data. That's a level that should be high enough to take care of the worst of the episodes and if the patient can tolerate that much pressure without discomfort, there's nothing a priori wrong with using it.

In this case, if chefmate finds that 12.8cm is too high to tolerate for a full night, but wants to continue investigating whether fixed pressure is better, then it's possible to start experimenting with lowering the pressure (slowly) while watching the data carefully. And if it becomes clear that a pressure that's significantly lower is enough, that's great. But at the same time, there's less risk of having a horrible night due to a super high AHI starting at 12.8cm than starting at the median pressure level, whatever it is.

robysue wrote:Keep your EPR setting at what you're used to and stick with the fixed pressure setting

It strikes me as odd to think that he cannot tolerate a few pressure changes per night on an Auto setting, but could tolerate and possibly even benefit from a pressure change on every breath.

EPR is not the same as APAP. A predictable drop in pressure on exhalation allows one to be more comfortable on every exhalation. And a predictable rise in pressure on every inhalation can make inhaling with the machine more comfortable. In other words, the comfort factor in Bilevel machines and EPR is that there is a well defined and predictable difference in pressure between EPAP and IPAP that helps the patient feel as though breathing with the machine is closer to normal breathing That's not the same as dealing with seemingly random increases in pressure due to flow limitations (that may not even be clinically significant).

And what about this ->

chefmate wrote:No improvement after 2 weeks of Apap therpay. none. not even an ounce. I feel even more tired for some reason because of all the adjustmets I have to make to get used to cpap mask.

?

He reports problems with adjusting the mask and somehow he gets advice on changing the pressure???? WT???

I don't see this as reporting problems with adjusting his mask. I read this as the OP is finding the need to make a large number of adjustments to his sleep habits in order to try to get used to sleeping with an alien on his face.

When I was new, I had no serious "mask adjustment issues" in the sense of needing help figuring out how to adjust my mask. But I had serious and long term issues with all the adjustments I had to make to my sleep habits in order to be able to sleep with a mask on my nose. And the way I would have phrased it at the time was: I am exhausted from all the adjustments I've had to make to try to get used to sleeping with a cpap mask on my nose.

I totally disagree with your post Robysue.

Address 1. Nuvigil, 2. mask adjustments and 3. sleep hygiene.

Pressure changes are a wild goose chase at this point. If he takes care of my first three points and still has problems, then other issues have to be considered and pressure changes could be one of them.

I'll put money if he takes care of the first three, his problems will be solved.

KISS.

ChicagoGranny wrote:I totally disagree with your post Robysue.

Address 1. Nuvigil, 2. mask adjustments and 3. sleep hygiene.

Pressure changes are a wild goose chase at this point. If he takes care of my first three points and still has problems, then other issues have to be considered and pressure changes could be one of them.

I'll put money if he takes care of the first three, his problems will be solved.

KISS.

I'll agree that Nuvigil (and the other things) may be a problem(s), but the flow limitations can drive an APAP crazy trying to keep up.......and wreck (any amount of ) sleep (?) in the process.

I still think trying to sort out "problems" with the therapy, rather than giving up, is a good thing.


Den

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Address 1. Nuvigil, 2. mask adjustments and 3. sleep hygiene.

I agree that those should be three high priorities for Chefmate.

Wulfman... wrote:the flow limitations can drive an APAP crazy trying to keep up

As I often reported on here, my settings are min 12/max 20 and I sleep most of the night around 12. But two or three times per night it will hit 18 or 20. Sometimes something awakens me at those pressures.

I have grown to consider this a good awakening and I just reach over and hit the stop button on the machine. Then after a breath or two, it will autostart at my min pressure of 12. I usually fall back to sleep quickly.

I would not dare go with a single pressure - I like sleeping near 12 much of the night and when my breathing gets rough, I like having the machine bring the pressure up to keep me breathing.

Wulfman... wrote:the flow limitations can drive an APAP crazy trying to keep up

Den, How long has it been since you used an APAP pressure range? Recent generations of machines are quite good and smooth at making pressure changes.

------------------------

In any case, it's probably good for Chefmate to see us oldtimers having disagreements over his issues. It should give him an idea that this therapy is as much art as science and he should not give up until he has exhausted many "artistic possibilities".

Over and out.

Sheffey wrote:

Wulfman... wrote:the flow limitations can drive an APAP crazy trying to keep up

Den, How long has it been since you used an APAP pressure range? Recent generations of machines are quite good and smooth at making pressure changes.

*lol* Den wouldn't poke a modern machine with a 10 foot stick.

you'd need a longer stick to get him in range.

if he sees someone's pressure go up due to flow limitations, and they wake up 30 minutes later... well, it was caused by that sudden pressure increase. (true story)

I respect a lot of what Den offers for advice, but he really likes beating that ex horse.

...well you have my sympathy "I give up"....the welcome letter for this website says it's for all things C-Pap so all comments re this miserable device should be welcome. I was just "diagnosed" with moderate sleep apnea and am being pushed by my doctor to hurry up and get fitted. The second night of the study, II was unable to sleep at all with that mask. I couldn't stand to put my dentures in for a week afterwords because my mouth was so sore ~ not to mention being exhausted for two days after that horrible sleepless night. I have no sleep apnea symptoms and think this whole thing is a bunch of crap. My Medicare was charged a total of $4500 for this and they hardly paid anything so I have no idea how I'm gonna pay the balance. I'm in my late 60's and wanted to be able to stop working in December, but now with this hanging over my head I'm probably going to have to keep my cleaning jobs going. It seems to me that if the "getting used to it" process takes up to 6 months, more damage could be done to a persons health by the lack of sleep caused by this machine.

Sheffey wrote:

Wulfman... wrote:the flow limitations can drive an APAP crazy trying to keep up

Den, How long has it been since you used an APAP pressure range? Recent generations of machines are quite good and smooth at making pressure changes.

I thought I had run across one awhile back in 2010 (a nap), but I can't find it again.
However, the last one I could find was also a nap (about 3 hr. 45 min.) on August 9, 2008. Range was set 12 - 15. I had two flow limitations and one hypopnea in that time, but my (2005 vintage) Respironics Auto w/C-Flex did it's little 1 cm. pressure bumps/probes throughout the whole nap. 90% = 12.9 Average = 12.2 AHI = 0.3

Prior to that, regarding a longer period of use, I used my first APAP for the first whole week in July of 2006 with a range of 10 - 15. Considering I had been "prescribed" a fixed pressure of 18 cm., I only hit 15 for 1 1/2 minutes on only ONE night. I used 10 as the minimum because after I got my first machine, I reset it from 18 cm. to 10 cm. (and stayed with that for almost a whole year).....but prior to using the APAP, I had been experimenting with 11 and 12 cm. which gave some better results. With the range of pressures, virtually none of my apneas (which were minimal in number - 5 in the whole week - which was more than usual) had preceding flow limitations or snores, so the apneas occurred without pressure increases to head them off. Some nights I had very few flow limitations and some nights I had quite a few. Snoring also had variations, but by my later standards, fairly high numbers. I had a higher AHI than at my pre-experiment or post-experiment setting of 12 cm. Also, the range of pressures didn't completely diminish the snoring or flow limitations.

However, I've seen many reports posted on the forum and I haven't seen much difference in the way the algorithms interpret/treat the events. Consequently, I haven't changed my mind on how the ranges of pressures CAN affect SOME people. And, I get tired of seeing people struggle with their therapy (or the quality of their sleep) and THINK that since they have an APAP that they have to run it in a range of pressures. So, in those situations, I feel it necessary to point out what to me is "obvious", and try to suggest alternatives.


Den

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palerider wrote:

Sheffey wrote:

Wulfman... wrote:the flow limitations can drive an APAP crazy trying to keep up

Den, How long has it been since you used an APAP pressure range? Recent generations of machines are quite good and smooth at making pressure changes.

*lol* Den wouldn't poke a modern machine with a 10 foot stick.

you'd need a longer stick to get him in range.

if he sees someone's pressure go up due to flow limitations, and they wake up 30 minutes later... well, it was caused by that sudden pressure increase. (true story)

I respect a lot of what Den offers for advice, but he really likes beating that ex horse.

What I really HATE is to see people suffering with their therapy and sleep quality and seeing people continue to keep recommending ranges of pressure when it's obvious that with their low AHI, the "quality" of their sleep IS the problem.

You can make all the snide remarks you want to. I DON'T CARE!!! It's NOT going to change my mind or affect my decisions to recommend alternatives to the users I see having issues.


Den

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Wulfman... wrote: I DON'T CARE!!! It's NOT going to change my mind or affect my decisions to recommend alternatives to the users I see having issues.

well, as long as you're not getting upset about it, then good

you have a point, in some subset of cases... but I don't think it's always the first thing to jump all over if someone isn't doing well. I could be wrong.

you keep on offering your opinions, I'd never want to change that.

palerider wrote:

Wulfman... wrote: I DON'T CARE!!! It's NOT going to change my mind or affect my decisions to recommend alternatives to the users I see having issues.

well, as long as you're not getting upset about it, then good

you have a point, in some subset of cases... but I don't think it's always the first thing to jump all over if someone isn't doing well. I could be wrong.

you keep on offering your opinions, I'd never want to change that.

Heck no. It's not hard typing with emotion.

On the other hand, it's not hard to read some of these reports and see what IS happening.......even if it's a half hour later.

Have a good one.

Den

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ChicagoGranny wrote:I totally disagree with your post Robysue.

Address 1. Nuvigil, 2. mask adjustments and 3. sleep hygiene.

Pressure changes are a wild goose chase at this point. If he takes care of my first three points and still has problems, then other issues have to be considered and pressure changes could be one of them.

I'll put money if he takes care of the first three, his problems will be solved.

KISS.

1) Nuvigil. I've not seen the other thread, and yes this could be a problem. And if it is it must be addressed.

2) Mask adjustments. There's been nothing in this thread, which is the only one I've seen by chefmate, that clearly indicates there's a serious issue with mask adjustment problems. Not saying it's not a potential problem, but until I see someone making a specific complaint about his/her mask (it's too tight, it's leaking, it seems too big, it seems too small, etc.), I don't tend to presume that a problem exists. Perhaps that's because I never had a problem with mask adjustment issues in spite of my long and torturous cpap adjustment period. I know that newbies have serious problems with getting the mask adjusted, but adjusting to CPAP is not the same as adjusting a mask. And I also know that when I was a newbie with serious CPAP adjustment problems that were NOT being caused by mask issues, I got very tired of being told by posters here and my sleep doc's PA that my problems could be fixed by readjusting my mask or changing masks.

3) Sleep hygiene. Again, there's been nothing posted in this thread by chefmate that says anything good, bad, or indifferent about his sleep hygiene.

Keeping the KISS mindset in mind: The first and most important thing that chefmate needs to do right now is NOT GIVE UP. When he made his first posting, that's where he was: Ready to give up. He's willing to continue trying (for now), and that's actually the first and most important thing he can do for himself. And if trying straight CPAP at 12.8cm is the current way chefmate can talk himself into NOT GIVING UP, then it's a very good thing for him to try sleeping with his PAP set in CPAP mode at 12.8cm for several days.

Remember too, that neither Den nor I suggested that chefmate make these changes. Rather, when chefmate said:

chefmate wrote:I am going to set the APAP in CPAP mode at a single pressure setting of 12.8(my 95 percentile pressure is 12.96). I have a feeling that arousals related to sudden fluctuations in pressure might be the root cause of my sub-optimal therapy.

Den and I were happy to tell him that his idea was a reasonable idea to try since it kept chefmate from giving up entirely.

krikit wrote:...well you have my sympathy "I give up"....the welcome letter for this website says it's for all things C-Pap so all comments re this miserable device should be welcome. I was just "diagnosed" with moderate sleep apnea and am being pushed by my doctor to hurry up and get fitted. The second night of the study, II was unable to sleep at all with that mask. I couldn't stand to put my dentures in for a week afterwords because my mouth was so sore ~ not to mention being exhausted for two days after that horrible sleepless night. I have no sleep apnea symptoms and think this whole thing is a bunch of crap. My Medicare was charged a total of $4500 for this and they hardly paid anything so I have no idea how I'm gonna pay the balance. I'm in my late 60's and wanted to be able to stop working in December, but now with this hanging over my head I'm probably going to have to keep my cleaning jobs going. It seems to me that if the "getting used to it" process takes up to 6 months, more damage could be done to a persons health by the lack of sleep caused by this machine.

Except......this is a "support" group to HELP people get used to this therapy, get them knowledgeable about it and make them aware of the fact that they need to take control of their own therapy.
NOBODY is going to care as much about YOUR therapy as YOU should/will.

We......as in ALL of us......have been through the "newbie" stages of this therapy......where you are......and are trying to help people like yourself get it figured out. The first step to successful therapy is the "acceptance" of what it is and how badly it can affect your health. Bad-mouthing it or trying to swim in the river of "DeNile" (denial) is counterproductive.

You could do yourself a big favor by registering as a member of the forum and listing all of your equipment and the settings.

Welcome to the forum.

Den

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Wulfman... wrote:What I really HATE is to see people suffering with their therapy and sleep quality and seeing people continue to keep recommending ranges of pressure when it's obvious that with their low AHI, the "quality" of their sleep IS the problem.

A big +1.

That said: In terms of chefmate's original posting, we don't have much to go on---except that chefmate was fed up to the point of serously considering quitting APAP altogether.

And (for now) chefmate has a plan to continue trying to make PAP therapy work, which is GOOD.

The fact that chefmate's plan involves switching from APAP to CPAP should not be an issue, and quite honestly, I don't see why folks are reacting so strongly to the fact that Den and I supported chefmate's plan.

Nor do I see why folks are "picking" on Den for his continual reminders that SOME folks do indeed sleep better when on fixed CPAP than on APAP. Most of us don't. I get that. But some people do. And if you're still feeling awful in spite of low AHI's and using the machine every night, it's not such a bad idea to try fixed pressure for a few days to see if you happen to be one of the people who sleep better using CPAP.