One person’s journey - cpap FAIL (so far) [long post]

Geez, started quite a firestorm didn't I?
All I was saying is that OP, not having had success with xPAP, still feeling lousy, having a history of other possible triggers to feeling lousy, having somewhat questionable sleep study results---might want to try a somewhat different approach that may get her to feel better. Sometimes we get so focused on AHI, RERA, SBD, RDI, and all the alphabet soup, that we lose sight of the fact that the objective is first, to get the patient to feel and function better.
You would really be surprised about how inexact a science sleep medicine is right now.

Stephen

SRSDDS wrote:. . . You would really be surprised about how inexact a science sleep medicine is right now. . . .

Shhhhh! Not so loud. The insurance people might here you!

HoseCrusher wrote: The solution is to eat a balanced diet, but 10 minutes prior to eating to put a couple of drops if bitters on your tongue. The bitter taste stimulates a vagal response to produce digestive enzymes and adequate acid in the stomach. This allows you to get all the nutrients from your balanced diet.

What the heck are "bitters" if you don't mind my asking?

SRSDDS wrote:You would really be surprised about how inexact a science sleep medicine is right now.

I'm the last person on the planet that would be surprised by that.

jnk wrote:But when someone with no apneas and no significant desats has lousy sleep and feels worse at a good pressure with a good mask after months of patience with it, I think sometimes that person needs assurance that he or she is still welcome to post his or her experiences here, even if he or she chooses to try other approaches to getting good sleep.

I'm probably the last person on this forum to have a problem with anyone questioning whether to remain on CPAP (and I'd be the first to ditch mine for a better alternative). However, unless in my foggy brain I've mixed things up, she did say she was never titrated and that she's not tracking FLs/RERAs (or whatever her machine spits out). To me that says that she is quite possibly receiving sub-optimal therapy with CPAP, to which she has acclimated quite nicely, and if given a real titration and a therapeutic pressure range, she may fare very well on CPAP. Therefore, if I were her, I would follow through on that before abandoning CPAP. Personally I just like to be thorough in investigating things before concluding that they can't help me and switching modalities, only to later wonder if I would have benefited from the first modality had I only seen it through. But that's just me.

SleepingUgly wrote: . . . she did say she was never titrated . . .

To my way of thinking, titrations are particularly valuable for documenting reaction to pressure and screening for other sleep disorders. Both are important things to do, I think.

SleepingUgly wrote: . . . she's not tracking FLs/RERAs (or whatever her machine spits out). . . .

In my opinion, with those "events," no home machine is going to tell you diddly, despite what it may claim. You have to go by how you feel to titrate the best pressure for those over time. Some have to ride a few cm higher than what gets rid of all home-reported events in order to feel their best, from what I understand. Those people do better on straight CPAP than APAP, I hear.

SleepingUgly wrote: . . . quite possibly receiving sub-optimal therapy with CPAP, to which she has acclimated quite nicely, and if given a real titration and a therapeutic pressure range, she may fare very well on CPAP. . . .

Yep. True. And I consider self-tweaking over time to be more important for finding the optimal pressure than a one-night titration snapshot. And let's not forget trying bilevel before giving up on PAP therapy, too.

SleepingUgly wrote: . . . If I were her, I would follow through on that before abandoning CPAP. Personally I just like to be thorough in investigating things before concluding that they can't help me and switching modalities, only to later wonder if I would have benefited from the first modality had I only seen it through. But that's just me.

Sounds like GREAT advice to me. For everyone. And that, I WILL sign off on!

jnk wrote: Some have to ride a few cm higher than what gets rid of all home-reported events in order to feel their best, from what I understand. Those people do better on straight CPAP than APAP, I hear.

Tell me more about that, please (I'm a thread hijacker extraordinaire this week). Are you saying that the FLs look good per the machine, but people feel better if they continue to go up on pressure? And why straight CPAP rather than APAP?

SleepingUgly wrote:

jnk wrote: Some have to ride a few cm higher than what gets rid of all home-reported events in order to feel their best, from what I understand. Those people do better on straight CPAP than APAP, I hear.

Tell me more about that, please (I'm a thread hijacker extraordinaire this week). Are you saying that the FLs look good per the machine, but people feel better if they continue to go up on pressure? And why straight CPAP rather than APAP?

Every machine reports those kinds of events differently using proprietary definitions.

Home machines do a GREAT job of reporting apneas. Some even do a halfway decent job at reporting the state of the airway during them.

But when it comes to hypopneas, we have to take the home-machine reports with a grain of salt. Those numbers are, at best, estimates to be used for trending.

Move further down the food chain to FLs and RERAs, and home machines are just guessing based on flow. Flow numbers are good for trending for a particular individual, maybe, over long periods of time, but can't be taken as useful for diagnostic or treatment-effectiveness-assessment purposes, as I understand it.

So once a person has found a pressure that is the lowest pressure that gets rid of the greatest number of home-reported events, a person still does well to see if a little more pressure, even if it doesn't lower the numbers, makes the person feel better. Of course, if that increase in presssure causes an increase in apneas as averaged over a few weeks, it is not likely a good thing to do. But if it doesn't degrade the numbers, it is something worth trying, since for SOME people, a tad more pressure can make the airway more stable and make them feel better, no matter what estimates the home machine may spit out on less-than-apnea "events."

That is based on nothing more than what I've read in this forum about people self-tweaking and feeling better from it.

Remember, though, that the long-timers here were self-tweaking long before today's type of home-machine data was common and before APAPs were common. How did they do it? Mostly by feel, after training themselves to monitor how they felt. It is better to have data to use, sure. But the final tweak of pressure should still be about how one feels, not flawed event-estimates, in most cases of plain-vanilla, uncomplicated OSA, in my opinion.

The same principle would apply to running pressure a tad lower, even if it increased less-than-apnea events, if it made the user feel better and did not cause desats. It is the rested feeling in the morning that says more about arousals, micro-arousals, alpha-intrusions, sleep stages, etc. than any boat-load of home-machine estimated FLs.

In my opinion.

Going through that process is less complicated with a CPAP than with an APAP because you are searching for one all-night good pressure with CPAP, and the pressure changes with APAP can complicate that process. It takes out a variable in the search, a variable that can throw things off. I never had to go through that process, becaues raising my minimum EPAP on my bilevel did the trick for me. But if I had residual sleepiness and tiredness and needed to investigate, I would turn off the auto mode to do that in order to simplify my troubleshooting.

Hope that helps you see what is in my head. It may, of course, be right, or wrong. Probably a little of both.

Dojers wrote:

HoseCrusher wrote: The solution is to eat a balanced diet, but 10 minutes prior to eating to put a couple of drops if bitters on your tongue. The bitter taste stimulates a vagal response to produce digestive enzymes and adequate acid in the stomach. This allows you to get all the nutrients from your balanced diet.

What the heck are "bitters" if you don't mind my asking?

Bitters are plants that invoke a bitter taste. This is different from sour or tart. A classic is dandelion root. Pull up a dandelion and chomp down on a little of its root and you will experience a bitter taste.

In the bar some drinks call for a splash of bitters. The Angostura brand is often found in the bar. You can look them up and find a little about their history.

You can blend the plants used to make bitters, and come up with different formulations. For example Swedish bitters are formulated to relieve constipation.

The key to using bitters for digestion is that you have to taste the bitterness. You can't put a drop in a glass of water and take it that way. You need to put the drop on your tongue a few minutes prior to eating.

You still with us, Jade? Or did you give up on us about two pages of posts ago?

Wow, I got too busy to get back here earlier—I’m caught up on the thread now, I think…
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SleepingUgly, interesting theory your rheumatologist has, and true of many conditions, I suppose. I’ll have to do some reading up on ‘somatic syndromes’—I guess that means other conditions that are in some respect(s) similar to fibro.

It’s not that I’m not looking at flow, it’s that my machine doesn’t track it. My 2nd sleep study was to confirm my self-titrated pressure, which the sleep docs told me it did. Though I don’t have a large degree of confidence since I slept little and haven’t read up on how valid/reliable a less-than full night titration is considered to be.

I could possibly be under-treated. I could be over-treated. But a gal has to start somewhere, and though neither I nor the sleep dr take the number on my machine as the gospel truth, throwing them out the window without any stronger evidence to suggest that be done than what I have, would be really crazy-making.

I beg to differ on one small point, it’s a distinction that I’ve seen get lost before, on this forum and others. Not using cpap is not ‘doing nothing’.

What would you like to know about the titration study?
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HoseCrusher, your thoughts on nutrition are surely helpful, though I’m not sure they apply as directly to my condition as I’m currently exploring. But given my idiosyncratic response to cpap, I will save up all out of the box suggestions and periodically review them along this journey.

While I appreciate out of the box thinking, I wonder if you really think my experience is caused by inefficient digestion or too little water. I would think if such was the case, I would be having worse problems from them added to poppin’ off hypopneas all night long, than by treating the OSA.

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Sorry if I was unclear previously. No, there is no TMD. The clicking thing happens about once or twice a year. Not a single dentist I’ve had over my many years has ever suggested TMD might be present. There is no chronic or ongoing pain. There is no evidence that I currently grind my teeth. I may take up the google offer to see how hideous (or not) these devices look, though I haven’t seen yet a convincing argument that it’s any more likely to help than

After the targeted approach I took with trying cpap, and the time and money I put into it, I’m a little gun shy. Not looking for guarantees, mind you, just something a little more persuasive.

It is definitely AHI and not RDI.

The second sleep study was a titration. They claimed I slept enough to corroborate my self-titrated pressure.

Frankly, I don’t trust any of the numbers their studies report as much as I would if they resulted from sleeping in my own bed. I went to an allegedly top facility and to me it was rather barbaric. But most “modern” medicine strikes me that way, so I might be just weird.

SDB leads to increased pain. Pain causes arousals and may worsen SDB. What a chicken-and-egg scenario!

But that’s just it, I don’t feel lousy. My sleep seems pretty decent to me, except for being a somewhat light sleeper. I don’t know if I feel as good as I could (disregarding for the moment the sometimes-pain I have when I overdo things. This is my Normal, ya know? Unless I wake up one day and feel much better, or much worse, what can I compare my experience to? I’ve had a couple periods of sleep maintenance insomnia in my life, so I know a little about Worse, but…

I’m just scared ( )less that Something Terrible is going to happen to me, and yet I know intellectually that many people with untreated SDB go on to live healthily to ripe old ages. I just don’t trust my luck.

My sleep dr said there were no indications that bilevel was warranted and so ins. wouldn’t cover it.

I didn't catch that you were eventually titrated. But you don't have faith in those findings because you didn't sleep very long? How long did you sleep? Did they titrate you to eliminate RERAs?

What kind of mask are you using?

Do you use an oximeter? You mentioned "minimal desaturations" in your original sleep study, which I think got paraphrased in this thread as no desaturations. How minimal are we talking?

So it sounds like you used CPAP for 3 months the first time around, and about 3 months the second time around. Is that right?

If you have excellent digestion and are peeing 2 liters of fluid a day, you are good to go and will have to look elsewhere for a solution.

However, while the recommendation on diet and hydration is "out of the box" for the specific issues you are having, it is not "out of the box" for general health. Many people believe that health begins in the gut and I think that is an excellent place to begin to solve problems.

I don't know if luck has anything to do with anything, but I do know that with proper digestion and hydration the cards are stacked in your favor.

In my small circle of friends I have been totally taken aback by the benefits of digestion and hydration on various "non descript" issues. While not a "cure all," it is a giant first step toward health.

OK, back to a more traditional approach to solving this... Yours is not an easy one to figure out...

Maybe there is nothing for the OP to figure out. Maybe she just doesn't need *PAP and she is within the wide range of normal. How much research is there on what exactly is normal?

I am fairly sure that my father and grandfather had sleep apnea, neither ever treated as they both died in the 1980s. I remember as a kid listening to my grandfather's dramatic snoring and choking events and long pauses with no breathing. My sister and I used to wonder if he was dead and then he would suddenly snort! (We were an extended family in a tiny house--entertainment would have to come from somewhere. ) Anyway, grandpa lived to age 99. Dad died at 63. Who knows what effect apnea had on them.

SleepingUgly, I don’t have a huge amount of faith in the whole sleep medicine field, or the entire field of medicine. There’s too many screw-ups, too little transparency and accountability to customers (aka patients), and too little attention to the range of responses and optimizing treatment for the individual rather than treating them as if they were the aggregate. I could go on--it’s a big soapbox—but I’d better move on to the rest of your questions.

In the 2nd, titration, study:
total recording time: 427 (minutes)
sleep period time: 395
total sleep time: 230
sleep efficiency: 54%
sleep latency: 32
total stage change after sleep onset: 143
awakenings after sleep onset: 47
WASO: 165
REM periods: 1
RERAs: 25 count and 9.9 index for 152 min. of supine sleep (left-side was better, right-side worse)

…and that was with taking 2 sleeping pills (!), which I do not do at home. These numbers are *very* atypical for me. At home, I fall asleep within about 0-10 minutes and sleep for about 7 hours, give or take. I wake on average 2-6 times per night, mostly just briefly enough to change position. This description applies to not using cpap.

Desats:
wake…99 max…96 mean…88 min…1.6% time between 80-89%
non-rem…99 max…94 mean…86 min…2.1% time between 80-89%
rem… n/a

I don’t think they titrated much during the 2nd study, given the fragmentation of sleep.

I use nasal pillows. (I’m not a mouth breather, and my leak report confirms that.)

Yes, about 3 months use each time.
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HoseCrusher, How does one tell if digestion is good? I’m really curious about this now, having not ever really thought about it before.

I’m not measuring the quantity when I “go”, but I drink plenty—and some of it is non-alcoholic, too. j/k on that last comment! I drink mostly water and lots of it, so I don’t think I’m dehydrated. I can tell when that happens, because I hear a whooshing sound in my ears when I get up. Usually only happens when I’ve gardened a lot on a hot day and didn’t catch up on what I sweated out.
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goldfinch, I wonder about that as well. I just want to make sure I’m not overlooking something that would be beneficial to me. I sure wish the field were much more advanced with much better information available.

I’ve never been good friends with Ambiguity…

The extreme signs of poor digestion are GERD and gall stones. Along with that comes a general decline in health.

The subtle signs include that heavy feeling in your stomach after eating. If your food just seems to lay in the stomach, it could be that your digestive juices are not up to speed. This allows your food to ferment rather than be digested. As this fermented food passes through your lower GI tract, it can irritate things, or if you are dehydrated, stop things up.

Your stool should have an "earthy" odor to it in contrast with a "putrid" odor.

Age is also a consideration. As you top 40 it seems that the digestive juices start to slow down.

If you are drinking lots of fluids, be sure to monitor your electrolytes. An imbalance in electrolytes in your body can also give you a general feeling of unrest. My cardiologist recommends a pack or two of Emergen C, depending on how hot it is and how much activity you are doing.