Finally slept through the whole night....

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
day for night
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Finally slept through the whole night....

Post by day for night » Sat Mar 05, 2005 9:29 am

with the mask on, yet I feel more tired this morning. I have a mirage FF mask. I was able to get the whistling thing under control(using the humidifer at higher levels seems to reduce/eliminate the whistling). And I don't think leaks are a problem, it seems to seal really well.

So what's the deal? Any suggestions? I keep trying and want this thing to work. But honestly, so far, I feel worse on CPAP.
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littlebaddow
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Post by littlebaddow » Sat Mar 05, 2005 10:36 am

day for night, I don't know how long you have been trying but sleeping through the night is an achievement, so please don't give up.

Don't expect immediate results - it seems it's only the lucky tiny minority who feel better after the first night. For the rest of us, it is a gradual improvement over many weeks or even months and many of us expereince feeling worse before realising there's an improvement. Sleeping with a mask on is not normal and it takes a while to adapt. Your sleep is being disturbed by a different set of factors, worrying about the mask, the hose, the machine etc, so it's not really surprising you still feel tired.

Do keep trying, and do keep asking for advice and support in this forum.

Good luck

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limpy
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Post by limpy » Sat Mar 05, 2005 11:24 am

I have read that other people who wonder if it's really working for them or not keep a sleep journal. Now, this doesn't have to be an in depth thing. It could be as easy as:

Hours Slept: 7
Got Up To Pee: Twice
Other Awakenings: One, unrelated to [url=https://www.cpap.com/cpap-compare-chart/CPAP]CPAP[/url], damn cat.

Comments:

I slept all the way through the night tonight for the first time, not counting the peeing and the cat. I still don't feel any better though. Actually my throat kind of hurts.

Modifications For Tomorrow Night:

I'm going to tweak my [url=https://www.cpap.com/productSearch.php? ... humidifier]heated humidifier[/url] up a bit tonight. Also, I'm going to try to get 8 full hours tonight. Hopefully I can keep the cat out, but if we close the door he scratches on it.

You could even start a thread "day for night's Sleep Journal" and use cpaptalk as the place to comment. Watch out for the peanut gallery commenting on every problem though!

jberken
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Re: Finally slept through the whole night....

Post by jberken » Sat Mar 05, 2005 11:53 am

How Long have you been trying now? Monday is 2 weeks for me and I've had the same "problem". I kept feeling something tapping on my ankles and it was my ass (it was dragging) . Many people here have mentioned REM rebound and I believe that to be at least part of it. Do you have an apap? Software? I've been adjusting according to advice here and the numbers from the software.

Anyway, while feeling a little "better" (but groggy as hell at the same time) everyday for the last few, this morning I feel GREAT! The first time I would say that. Got the ahi down to 2.9 (from 93) for 7.5 hours. I just keep sleeping with the damn mask and it seems to be turning around now. I don't think I realized untill just now that even though feeling foggy, I haven't had the "oh god I can't get up" feeling for days now.

Keep at it. Everyone seems to be a little different but they also seem to come around.

jjb

day for night
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Post by day for night » Sat Mar 05, 2005 2:07 pm

Thanks for all the suggestions. I probably posted in haste this morning, mostly because I was pissed and feeling like crap.

I have been at this whole CPAP thing for over a month now. As far as backgroud, my pressure is only at 6 and my apnea is in the mild/moderate range. I hava a remstar plus cpap. I was always kind of tired before, but not the debilitating tired that others describe.

So I started CPAP about 4+ weeks ago. I try a respironics gel nose mask first. I can't breath well with it due to being a mouth breather and some congestion. It leaks all the time. I try various remedies to fix the mouth breathing. It keeps me up all night, and I'm so worn out after the first 10 days trying to use the cpap, that my immune system is in the tank and I get the flu. Miss work, sick for over a week. I stop using cpap since I cant breathe. I also decide to order a resmed full face mask. After I heal from the flu, I start trying cpap again with the gel nose mask. It doesnt fit, I boil the thing to make it fit better, makes it leak worse. I take another few days off cpap. Now my resmed full face mask arrives. I use it fine the first night, but the next, I notice a loud whistling sound, I stop using the mask. Same thing happens half way though the next night. I call resmed the next day. Turns out there is a defect in some of the mirage FF masks. They are sending me a new one. I figure out that a turned up humidifier stops the whistling. I use the mask again for parts of the next few nights, finally to get a full night sleep in the thing last night.

So yes, I recognized when I woke up this morning that sleeping through the night was a MAJOR achievement. However, after putting up with all of this, I wanted it to make me feel better, not worse.

Whew, just venting about all this helps. Thanks for listening.
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rested gal
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Post by rested gal » Sat Mar 05, 2005 3:41 pm

day for night, I'm not a doctor, but.....(you probably know what's coming...heheh): If I were you I'd INSIST on an autopap set for a range of 5 - 10, or 6 - 10 (or top of 12) whatever.... but be sure it's AUTOPAP and heated humidifier.

The pressure of "6" that the sleep study came up with for you might be perfect. But then again it might not be. A sleep study titration is a single snapshot of one night - and maybe even just a few hours of that one night. It can be a very thorough "snapshot", but even so, it can't take into account your real sleeping environment at home.

Personally, I'd always want the reassurance of using a machine that can continue to titrate throughout the night, every night, through any changing conditions. That means an autopap. The specific autopap that has given me the most comfortable sleep of several I've tried is the Respironics REMstar Auto with C-flex and heated humidifier.

At the low pressure you have been prescribed, though, any of the major brands of autopap would probably suit you fine - you probably don't particularly need any drop of pressure relief on exhalation, which is what "C-Flex" does. Another I liked really, really well is the Puritan Bennett GoodKnight 420E autopap. I used the Fisher and Paykel HC 150 heated humidifier with it. I understand there is now an integrated heated humidifier that can come with the 420E.

My favorite masks, as a side sleeper who tosses and turns a lot are the Breeze/nasal pillows, the Activa, and the Swift. For a full face mask to mouthbreathe on congested nights - the ResMed Ultra Mirage FF.

Good luck getting it all going the right way!

day for night
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Post by day for night » Sat Mar 05, 2005 5:00 pm

I hate to say it, because I know the general opinion here, but my sleep doc(who is know nationally as one of the best sleep docs in the business) does not like autopaps. He, like many others, believes that they are reactive instead of proactive in preventing apnea. I point blank asked him about machines that change pressure. His response was that a straight cpap stops apnea before they start with one constant pressure. The auto machines react in that they allow you to start an apnea(which wakes you up some), then it increases the pressure(which continues to wake you up further) and that this causes more of a sleep disturbance. His belief was that straight pressure, if set right, is the best way for cpap to prevent apnea.

Still, I will ask again in my next appointment next week. I also plan on getting a copy of my prescription, just in case I may want to pursue this on my own at a later date.
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Liam1965
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Post by Liam1965 » Sat Mar 05, 2005 5:35 pm

EVEN were that true....

Why not have an auto-pap, run it on auto for a few nights a month to make sure you are getting the right pressure... and then set it back to CPAP mode.

I don't understand the point of the doctors here. Even if his statement were actually true, where are you going to get the best sleep, in a sleep lab, with uncomfortable beds, hospital sheets, and about a zillion wires connected to you, or in your own bed?

Once a month, 3 or 4 nights on auto to verify titrated pressure, and then back to straight CPAP. What scientist could POSSIBLY argue with that? And if it turns out that you're sleeping better in AUTO mode, leave it in AUTO mode.

I swear, sometimes people who are foremost in their field remain too long IN their field and become a detriment to it, in roughly the same proportion that they originally were a boon.

Liam, who understand the scientific method.

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Post by Janelle » Sat Mar 05, 2005 5:46 pm

When I read Day and Night's first post, like Rested Gal, I immediately thought "pressure's not high enough". See if you can talk with your sleep doctor, tell him your problems and ask if you can borrow an apap for a home sleep study for a few night and then let him download the results. This should show if you are having apneas, etc or not. It could be set at high and low pressure at 6 for a CPAP test to see if that is effective or not. I don't see how he can disagree with that. Then an additional night on APAP with a pressure range of say 4-12. If you can prove by the downloadable data that you need a higher pressure range and that you are having fewer apneas, hypopneas on the APAP and it's more than likely higher pressures, then he will have to raise your CPAP pressure, or admit that perhaps APAPs don't work the way he thought.

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Post by -SWS » Sat Mar 05, 2005 5:55 pm

day for night wrote: The auto machines react in that they allow you to start an apnea(which wakes you up some), then it increases the pressure(which continues to wake you up further) and that this causes more of a sleep disturbance.
In my own mind this proves that even the "great" doctors don't necessarily understand every aspect of the technology they work with---or in this case refuse to work with. Here's the text of a post I recently submitted to another board describing what the REMstar Auto does to prevent apneas:

"...the RemStar Auto algorithm is not designed to sacrifice apnea or hypopnea treatment toward ascertaining optimum pressure. Rather, those algorithmic pressure tests you probably read about test the airway for more subtle "flow limitation" collapsibility that are often both predictive and preliminary to apneas and hypopneas. The Remstar Auto's algorithmic pressure tests don't actually induce apneas or hypopneas.

Rather, from a therapeutic pressure (P-therapy) a test is run by first briefly and slightly dropping pressure to achieve a marginally flow-limited but still patent airway (P-crit-TEST). From that critical test pressure the RemStar then progressively raises pressure, while measuring subtle respiratory airflow changes, to achieve an ideal pressure (P-opt-TEST) relative to optimum calculated respiratory flow. Several such iterations might be run to baseline and calculate a new therapeutic pressure (P-therapy).

The above experimental pressure reduction to P-crit-TEST is theoretically not supposed to induce a cortical arousal ("sleep disturbance") or oxygen desaturation. Rather, it is a very subtle airway collapsibility test that does not really involve inducing apneas or hypopneas. The above test is also a more proactive and separate algorithmic technique than that portion of the algorithm the RemStar Auto would use to reactively cope with apneas and hypopneas that still manage to spontaneously crop up despite proactive therapeutic delivery of air pressure. "


That description is summarized from published Respironics data, and it is in direct opposition to the way your doctor desribed AutoPAP in my opinion. Not to flame you, your doctor, or anyone who disagrees with AutoPAP efficacy or technical feasibility. Only to say, "Hmm... I think your doctor's wrong BIG TIME, and apparently so does at least this one manufacturer of AutoPAP." However, the Respironics design objective is but a design objective. That is not to say they actually achieved that goal. I can only say I sleep and feel much better on AutoPAP than I do fixed pressure----and so do most who try both platforms and report back here. Others admittedly fare better on CPAP than AutoPAP.

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rested gal
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Post by rested gal » Sat Mar 05, 2005 6:54 pm

day for night, far be it from me as a simple autopap user to argue with a nationally known sleep doctor (I really do understand your dilemma - who to believe?) but, I think he's mistaken in his idea about how present day autopaps work. The idea of autopaps being "reactive" instead of proactively warding off apneas seems to be widespread among sleep doctors. I really don't think that's how the modern autopaps work. But hey, I'm not techie either.

I don't doubt that there may be some patients for whom straight single pressure cpap works best. But I think there are many, many more who would benefit from autopap.

Setting aside differences of opinion about how autopaps actually work, I don't think any doctor who is not a regular cpap user himself/herself truly understands the problems patients can have with a steady pressure that may be, for most of the night, higher than what is really needed to keep the throat open.

A higher pressure than what is actually needed at any give time is apt to cause mask leaks and more drying of mouth and throat - even with heated humidification going full blast, especially if the patient has to wear a full face mask for mouthbreathing. Depending on the patient's reaction to any particular single pressure, there can be more chance of aerophagia (swallowed air causing bloating or gas.)

If there were any way to truly poll all the people who have been prescribed straight cpap all over this country, and get really truthful answers from them regarding how many hours a night and how many nights a week they actually USE their cpap machines, I'll bet the estimate of 40% drop out rate would soar to more like 80-90 % are not using their machines as they should. But as long as doctors don't hear back from a drop-out, the doctors feel it must be going ok for that person. If the doctor's office calls even once a year to see how it's going - what is the "guilty of non-compliance" patient probably going to say? "Yeah, I'm doing ok."

If the patient has already made up their mind they are NOT going to use that uncomfortable machine and mask, and the DME (usually most unhelpful) hasn't helped them resolve it satisfactorily, what patient is going to say something that will probably get them run through that same old mill again - go to doctor, get sent for another sleep study, be prescribed another straight cpap, or maybe a bi-level that is still hitting them with that single high inhalation pressure, no matter if the exhalation pressure drops. Yes, I'm on a rant. LOL!!

night for day, you're not the average patient. You are continuing to talk to your doctor about your treatment. I'd be surprised if most people on cpap (especially those who never see apnea message boards) ever question what the doctor says. They just take what's given and try to make do. Or drop out.

You might very well be one who will do better on straight cpap than any other kind of machine. But you also might be someone who would get more comfortable, more effective treatment on autopap. There's really no way to tell without trying one. It's too bad your doctor won't at least let you have a one week trial on an autopap. A knee-jerk "NO to autopap" from any doctor...I don't care how highly regarded he/she may be among their sleep field colleagues....are rather ridiculous, imho.

Given how clueless most doctors are when it comes to comfort in this kind of treatment - mask, air leaks, etc., it's not really surprising that they might even misinterpret what a patient tells them after a trial on autopap - "Doctor, I feel worse." If the autopap's range is set for a low of 4 making the patient feel suffocated for air, or a mask was so leaky it was distracting to the patient gave the doctors bad feedback, or the doctor's initial bias was set in stone through bad experiences with some of the earlier autopap machines, no wonder some doctors feel that way about autopaps.

But to say, across the board, that autopaps can only "react" to apneas as they happen, or that the varying pressure changes will interfere with the patient's sleep...things like that...well, all I can say is - hasn't been the case for me with 4 different "modern" autopaps now, none over a year old.

Puritan Bennett 420E auto
Respironics Remstar Auto
Respironics Remstar Auto with C-Flex
ResMed Autoset Spirit

No, I haven't needed that many different autos, nor did any have any mechanical failure that caused me to get a new one. All have given me great great treatment, and I didn't stop using any one of them because I needed "better treatment". I just wanted to finally have tried each autopap from the major manufacturers. All have worked great for me. The one I highlighted is the one I prefer, but only because of the nice comfort of C-Flex - not because that machine itself "worked better" for me. All of them worked equally well - for me. I use the software for each, so...in addition to subjectively knowing how I felt each morning, I could also see what the AHI was.

Will post some links in a few minutes to interesting previous discussions about autopaps. Look especially within those topics for the posts by -SWS.

My edit on May 24, 2006 - The PB 420E autopap has been my "machine of choice" (yep, back to it again) for many months. Not because of a difference in treatment...I just prefer the Silverlining software it uses.
Last edited by rested gal on Wed May 24, 2006 3:58 am, edited 1 time in total.


Mikesus
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Post by Mikesus » Sat Mar 05, 2005 7:44 pm

This is one reason why the docs are leary of Autos

This report shows a test of a few autos. These were tested with a simulated patient (they recorded a patient during a sleep study and "played it back" into each auto. The results are interesting...

Link to study

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rested gal
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Post by rested gal » Sat Mar 05, 2005 8:15 pm

Thanks for the link, Mike. The most interesting thing about it to me were older names of the autopaps being used in the test:

UNITS TESTED
· AutoSet T - ResMed
· GoodKnight 418P - Puritan Bennett
· Tranquility Auto – Respironics
· AutoAdjust LT - DeVilbiss


Would be interesting to see the same test done today with the newer machines:

Autoset Spirit and/or the S8 Pioneer Auto due to be out sometime this year - ResMed

GoodKnight 420E - Puritan Bennett

REMstar Auto - Respironics

and whatever autopap Devilbiss has now


Something else I found interesting in that study conducted back in 2001 was this, on the last page, just before the "Conclusions" that most anti-auto doctors probably hang their hats on:

"DISCUSSION
Of the myriad of factors evaluated by ‘auto-CPAP’ devices, only four patterns were tested. In addition, patient adaptation was not allowed for."

My Edit: Mike's link no longer worked, so I found a new link to the bench study he had found...the Bliss, Eiken, McCoy bench study in 2001:

http://www.inspiredrc.com/AUTO2001a.PDF
Last edited by rested gal on Fri Feb 29, 2008 10:00 am, edited 1 time in total.

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rested gal
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Post by rested gal » Sat Mar 05, 2005 8:29 pm

A bit more on that particular 2001 study here, posted by a Guest in Feb:

Feb 06, 2005 subject: How AutoPAP Works

Back in that topic some links had led me to this:

"Specifically, response to snoring was not evaluated. In addition, patient adaptation was not allowed for. A real patient would hopefully correct their abnormal breathing pattern as the pressure increased.

The auto-adjusting devices in this study did not have the opportunity to see any correction, so they may have responded differently if the abnormality was corrected."