The Good, the Bad, and the Ugly: Three years later

Most standard first-line medical treatments are aimed squarely at the largest part of the bell curve. Outliers are considered to be an exception to, or unresponsive to, or possibly allergic to, the standard treatment, or else they are thought of as being sufferers of something completely unrelated to the disorder for which a particular treatment at hand is designed.

Chronically hypersensitive sleepers with some forms of insomnia may be considered by some as having a documented contraindication for PAP. But that is only one of many, many specific reasons that sustained efforts with PAP may never improve sleep for many, many people.

As long as those people give PAP the old post-graduate try, I bless all efforts to move on to appliance/surgical/positional/etc. approaches that, although not first-line treatments (in my stubborn opinion), are nevertheless very respected treatments for any for whom sustained PAP therapy is less than golden.

It does require a battle being waged by the patient and doc to get those somewhat experimental, or less-than-fully-documented, approaches paid for. The medical approaches offered to the masses will not always easily deal with the problems of those with exceptional problems who do not respond to the most common approaches that work the best for most people. Unfortunately, it appears to be the accepted rule of the day that there is little money available to use for treatment of such patients, let alone effective study of them. So individually the battle has to become experimental in how it is waged by clinicians so as not to be shot down by bean counters at every turn. That's where the creativity of modern doctors comes in most handy these days--knowing what words to use on insurance forms in order to find ways to help people without getting caught.

Is there anywhere on the planet where GPs are respected by specialists? If so, I don't think I've ever been there. And I'm neither.

robysue wrote:There is absolutely no real advice to someone who is compliant, but who's life has gone to hell after starting PAP therapy because no-one has bothered to study these patients.

We should study this subgroup of patients, although I would argue that the subjects must consist of people who use CPAP all night, every night, at titrated pressures, for sufficient hours of sleep, in whom other disorders have been excluded, and who remain tired despite this. We absolutely can't include subjects who don't keep the CPAP on all night, or sleep 6-6.5 hours, or who have aerophagia awakening them from sleep, as it could then be argued that something else could explain why they are still tired other than that CPAP therapy does not help them. (We don't need an experiment showing that using that gear/GI issues/etc make certain people worse, as people can just report that they were up half the night screwing around with leaking masks, burping, etc. What's of interest is showing that treating sleep apnea makes daytime functioning worse in a subset of those who tolerate and use CPAP.)

I feel as though I've become addicted to the damn machine: As three nights without PAP this summer showed, I no longer sleep any better without the machine than I do with the machine. But I still do not feel that I function in the daytime as well as I was functioning before starting PAP three years ago.

The fact that you don't sleep well without the machine raises a flag that perhaps something else is going on (an intervening variable) that would explain your symptoms (e.g., tired, insomnia) besides just CPAP therapy. An "ideal" patient for this study would subjectively feel that they sleep well on CPAP, but feel worse during the day than without CPAP (and ideally show on a NPSG that they are sleeping well on CPAP).

Anyone fit that bill? Not I. Actually, there were times I felt I slept well on CPAP and that it helped; however, I never could get to titrated pressures due to aerophagia, and my threshold for getting aerophagia kept dropping and dropping. So it remains a hypothesis that my EDS would have resolved if I could have used titrated pressures, one that will likely never be proven/disproven.

I guess we're stuck a bit on semantics. I refuse to characterize someone as "giving up" or non-compliant when the medicine is not working. If someone loses coins in a vending machine and stops putting coins in, is that giving up? You can call this positive spin, I call it choosing to not connotate blame.

robysue wrote:...you're missing the point. But on this board there are a small number of us (including both 49er and myself) who never really feel much better on PAP than we did pre-PAP or it takes a year or more before we start to feel (marginally) better than we did pre-PAP. We are a small minority in the pool of OSA patients...

Yes, I hear you. I don't think we disagree on the important points. The patient population is not fully understood. There are problems not even being looked at yet because of that. In the mean time, lives are being stolen.

SU,

As one who can't stay asleep on the pap machine and has zero functioning as a result when I try to use it, I am perplexed as to why you want to exclude people like us since I suspect we are a significant percentage of folks who have have struggled big time with pap therapy. In my opinion, if you are serious about making pap therapy work for as many people as possible, no one should be excluded from studies who could possible benefit.

49er

SleepingUgly wrote:

robysue wrote:There is absolutely no real advice to someone who is compliant, but who's life has gone to hell after starting PAP therapy because no-one has bothered to study these patients.

We should study this subgroup of patients, although I would argue that the subjects must consist of people who use CPAP all night, every night, at titrated pressures, for sufficient hours of sleep, in whom other disorders have been excluded, and who remain tired despite this. We absolutely can't include subjects who don't keep the CPAP on all night, or sleep 6-6.5 hours, or who have aerophagia awakening them from sleep, as it could then be argued that something else could explain why they are still tired other than that CPAP therapy does not help them. (We don't need an experiment showing that using that gear/GI issues/etc make certain people worse, as people can just report that they were up half the night screwing around with leaking masks, burping, etc. What's of interest is showing that treating sleep apnea makes daytime functioning worse in a subset of those who tolerate and use CPAP.)

I feel as though I've become addicted to the damn machine: As three nights without PAP this summer showed, I no longer sleep any better without the machine than I do with the machine. But I still do not feel that I function in the daytime as well as I was functioning before starting PAP three years ago.

The fact that you don't sleep well without the machine raises a flag that perhaps something else is going on (an intervening variable) that would explain your symptoms (e.g., tired, insomnia) besides just CPAP therapy. An "ideal" patient for this study would subjectively feel that they sleep well on CPAP, but feel worse during the day than without CPAP (and ideally show on a NPSG that they are sleeping well on CPAP).

Anyone fit that bill? Not I. Actually, there were times I felt I slept well on CPAP and that it helped; however, I never could get to titrated pressures due to aerophagia, and my threshold for getting aerophagia kept dropping and dropping. So it remains a hypothesis that my EDS would have resolved if I could have used titrated pressures, one that will likely never be proven/disproven.

jnk is right on. Your Swift FX headgear passes right over the upper part of the mandibular joint and if tightened may aggravate the TMJ (and may cause headache) ? Have you tried a nasal pillow headgear mask which does't touch the cheek (like Breeze or Comfort) ? Perhaps TMJ surgery...a major issue (but aren't you worth it?)
Question : what causes the hand and foot pain and how is it related to cpap use? Hoping that you find a peaceful solution.

FattyMagoo wrote:I guess we're stuck a bit on semantics. I refuse to characterize someone as "giving up" or non-compliant when the medicine is not working. If someone loses coins in a vending machine and stops putting coins in, is that giving up? You can call this positive spin, I call it choosing to not connotate blame.

robysue wrote:...you're missing the point. But on this board there are a small number of us (including both 49er and myself) who never really feel much better on PAP than we did pre-PAP or it takes a year or more before we start to feel (marginally) better than we did pre-PAP. We are a small minority in the pool of OSA patients...

Yes, I hear you. I don't think we disagree on the important points. The patient population is not fully understood. There are problems not even being looked at yet because of that. In the mean time, lives are being stolen.

Thanks for clarifying FM.

To be honest, as one who has had trouble staying asleep on the machine and is temporarily suspending trying to use pap therapy for now due to functioning better by sleeping on my side in raised position with a neck collar, I do feel like blame is being connoted on people like me unintentionally.

We're not motivated enough, we take too many naps, we have poor sleep hygiene, etc. Interestingly, taking too many naps and consuming way too much coffee didn't prevent me from getting a better night's rest off of the machine on Saturday night. Alot better than when I practiced great sleep hygiene and had lousy sleep on the machine.

Unfortunately, as I have previously mentioned, my two sleep doctors were worthless. And I just found out when I called the first sleep center to get a written summary of the HTS that the reason my O2 desats were scored as zero was the because the mouthpiece slipped out of my mouth. The doctor never told me that they couldn't tell with accuracy what the true picture was. She was too busy wanting to pawn me off onto a psychiatrist.

49er

onlyme wrote: Question : what causes the hand and foot pain and how is it related to cpap use? Hoping that you find a peaceful solution.

No one knows for sure, but the working hypothesis is "OSA-related general inflammation".

The long version of the answer: Pre-CPAP I had been waking up with significant hand and foot pain almost every morning for about 5 years or so. At the time, I would tell my hubby that it felt as though I'd slept with my hands and feet "in fists" all night. Some mornings I'd wake up with my hands in claws and I'd have to work on unbending the fingers out of the claw shape. On the worst nights, I'd wake up with my feet cramping from being bent into the foot equivalent of a fist. (Try curling your toes as far as you can back towards your heels and hold it there as long as possible and you'll get a sense of what I mean.) The PCP said the problem was likely a bit of (minor) osteoarthritis and said to take OTC ibuprophen as needed to manage the pain. Except on the worst mornings, however, I needed little pain medication to manage the pain because pain would get better as the day wore on---which is contrary to the way most osteoarthritis sufferers describe their pain.

Six months into PAPing I was deeply involved in the First War on Insomnia and keeping a detailed sleep journal. And the phrase, "Woke up with no hand or foot pain" started to appear in my journal on a regular basis. By seven or eight months into PAPing, I was waking up pain free every morning---regardless of how bad I felt from the continuing insomnia problems. (The insomnia was beginning to be brought under control by that point, but it was NOT well controlled.) And, except for the days where the AHI starts to creep up to 3.5 or more, I still wake up with little or no pain in my hands and feet most mornings---regardless of how well I slept as far as the current insomnia is concerned.

At the time the pain started to disappear, I asked the PA who was responsible for my care under sleep doc #1 about whether the pain may have been an OSA symptom since that was the only thing that had improved during the first 6-8 months of PAPing. Her hypothesis was that the hand and foot pain was probably due to some OSA-induced generalized inflammation and the hand and foot pain may also have been aggravated by OSA-arousals, which can seriously increase the stress hormones involved in "Flight or Fight" situations. After PAP, the OSA-arousals disappeared (even though I was not sleeping well in other ways) and hence the amount of stress hormones being pumped into my system decreased and that allowed some healing of the generalized inflammation and also allowed my hands and feet to stay more relaxed at night as well. And after sufficient healing, the pain disappeared.

Sleep docs #2 and #4 agreed that is a plausible hypothesis. And it's a hypothesis that appeals to me because it would also explain the "slept with hands and feet in fists all night" feeling I used to get pre-CPAP: As a reaction to the "Flight or Fight" stress hormones being pumped through my body by the repeated "hypopneas with arousal" all night, I think my hands and feet were indeed curling into fists getting ready to fight the unidentified "whatever it was" that was threatening my body.

FattyMagoo wrote:I guess we're stuck a bit on semantics. I refuse to characterize someone as "giving up" or non-compliant when the medicine is not working. If someone loses coins in a vending machine and stops putting coins in, is that giving up? You can call this positive spin, I call it choosing to not connotate blame.

Unfortunately the semantics do matter. And it's not we the patients who created this language; it comes from the medical community that is supposed to be treating us. I've been told by three different sleep docs, "You've failed at PAP." In the best scenario this is the lead in to "So what could you try next is ...." In the worst case scenario, it has led to me being fired as a patient twice because the doc (or his PAs) were out of ideas on what I could try to make PAP work and they were not interested in helping me anymore.

I've posted about this semantic problem in the past. The first time was in a thread called A question of semantics: Why does the patient fail CPAP? that I posted back in May 2011, about the time I was fired by Sleep Doc #1.

49er wrote:To be honest, as one who has had trouble staying asleep on the machine and is temporarily suspending trying to use pap therapy for now due to functioning better by sleeping on my side in raised position with a neck collar, I do feel like blame is being connoted on people like me unintentionally.

We're not motivated enough, we take too many naps, we have poor sleep hygiene, etc. Interestingly, taking too many naps and consuming way too much coffee didn't prevent me from getting a better night's rest off of the machine on Saturday night. Alot better than when I practiced great sleep hygiene and had lousy sleep on the machine.

All I can say is that I understand completely.

Best of luck with your own journey and your own struggles with this insidious disease.

onlyme wrote:jnk is right on. Your Swift FX headgear passes right over the upper part of the mandibular joint and if tightened may aggravate the TMJ (and may cause headache) ? Have you tried a nasal pillow headgear mask which does't touch the cheek (like Breeze or Comfort) ? Perhaps TMJ surgery...a major issue (but aren't you worth it?)

My FX headgear is actually ridiculously loose. And I do mean ridiculously. The top strap doesn't even touch the top of my head. I can easily get two fingers between the cheek straps and my cheeks. The headgear slides around quite a bit some nights, and yet if the pillows are where they are supposed to be, they stay put regardless of how much the headgear is slipping around.

I have tried (briefly) a few other masks. I liked the headgear of the Pilaro much more than I like the headgear of the Swift FX, but I never could figure out how to momentarily pull the Pilaro away from my nostrils to scratch them or my lips. Nor could I master pulling the Pilaro slightly away from the nose and allowing it to resettle against my nostrils to fix a small leak: I wound up tearing a huge hole in the pillows on the second night of using the Pilaro. I got a another set of Pilaro pillows from the DME and tore a hole in them on the first night. All in all, it reminded me of trying to wear pantyhose in 8th and 9th grade.

The headgear for both the Comfort and the Breeze wraps around the temples and sits on the forehead. Hence these masks headgear look like they could cause additional problems with my tension headaches. That would be much more uncomfortable for me than the ridiculously loose FX headgear is.

As far as my TMJ stuff goes: I've had moderately serious TMJ problems for 30+ years. They've been controlled by the use of guards for most of that time and no-one has mentioned the need for surgery. Since 2011 (when I chewed through a brand new guard in less than 2 months), I have been seeing a very good TMJ specialist. By June 2012, the TMJ problems were better under control than they had been in 30 years. But with the insomnia and the migraine and tension headaches, the TMJ stuff started to act up in November 2012, but it did not get bad until March 2013. Since March the TMJ specialist has seen me chew through a total of three guards. In early September he decided to start (almost) from scratch and took many more measurements of my jaws and teeth, as well as new molds. He thinks the (long term) problem with my history of chewing through guards is caused by a feedback loop to the central nervous system. And so he hopes the design of the new guard (which has some distinct differences from all the previous guards I've worn) may not trigger the feedback loop. He's also told me that I'm an "interesting and challenging case" and that he "enjoys working out the puzzles" of how to fit a guard that doesn't cause adverse affects.

49er wrote:As one who can't stay asleep on the pap machine and has zero functioning as a result when I try to use it, I am perplexed as to why you want to exclude people like us since I suspect we are a significant percentage of folks who have have struggled big time with pap therapy. In my opinion, if you are serious about making pap therapy work for as many people as possible, no one should be excluded from studies who could possible benefit.

When I said "exclude", I meant from a (hypothetical) study trying to control for other variables. If the study includes patients who don't use CPAP therapy all night every night and who feel cruddy during the day, the obvious alternative explanation for why they feel cruddy besides that CPAP makes them feel cruddy, is that they don't use it. I'm not saying that people like you and me are not worthy of help or empathy, merely that we would confound a study attempting to examine why some people ON CPAP do not improve, and even worsen, with therapy. If we could figure out why some patients who USE CPAP don't improve or worsen, then the question is whether those findings are relevant to people who can't even use CPAP all night. Do you understand?

To be honest, as one who has had trouble staying asleep on the machine and is temporarily suspending trying to use pap therapy for now due to functioning better by sleeping on my side in raised position with a neck collar, I do feel like blame is being connoted on people like me unintentionally.

We're not motivated enough, we take too many naps, we have poor sleep hygiene, etc. Interestingly, taking too many naps and consuming way too much coffee didn't prevent me from getting a better night's rest off of the machine on Saturday night. Alot better than when I practiced great sleep hygiene and had lousy sleep on the machine.

I don't know if you mean that doctors blame you or people on the forum blame you. I think on this forum we tend to be geared toward problem solving, and it's often the case that we try to look for anything that might be worsening the situation in an effort to help. For example, naps can make it harder to fall asleep, and I would recommend to anyone with insomnia to try to avoid them, but I know there were times in my life that I couldn't have gotten through the day without a nap.

Personally, I don't think CPAP is always the answer. I very much believe that it's a choice whether to use it. To read some of the posts on this board, anyone who doesn't use CPAP is going to be dead or stroked out by next week, causing undue burden or funeral bills to their loved ones. How many health problems do people on this board have that have equally, if not more, deleterious AND KNOWN consequences, but go untreated? And we don't view those as something that must be addressed TONIGHT, or else. Quality of life matters. To take those who have no significant oxygen desaturations, no significant related health problems, who function well during the day, and turn them into tired, depressed train wrecks who can't function...where's the sense in that? As mollete has posted in the past, sleep deprivation is associated with mortality. It doesn't take a genius to recognize that turning someone who isn't tired into one who is wrecked will also increase their mortality (whether by car accidents or just hanging themselves from their Climateline).

Unfortunately the semantics do matter. And it's not we the patients who created this language; it comes from the medical community that is supposed to be treating us. I've been told by three different sleep docs, "You've failed at PAP." In the best scenario this is the lead in to "So what could you try next is ...." In the worst case scenario, it has led to me being fired as a patient twice because the doc (or his PAs) were out of ideas on what I could try to make PAP work and they were not interested in helping me anymore.

Boy, I really find that so offensive, particularly when you worked so hard to make the therapy work. No, the therapy has failed you big time and shame on the doctors for what they did to you although it looks like it was for the best.

49er said: To be honest, as one who has had trouble staying asleep on the machine and is temporarily suspending trying to use pap therapy for now due to functioning better by sleeping on my side in raised position with a neck collar, I do feel like blame is being connoted on people like me unintentionally.

We're not motivated enough, we take too many naps, we have poor sleep hygiene, etc. Interestingly, taking too many naps and consuming way too much coffee didn't prevent me from getting a better night's rest off of the machine on Saturday night. Alot better than when I practiced great sleep hygiene and had lousy sleep on the machine.

Roby Sue said: All I can say is that I understand completely.

Best of luck with your own journey and your own struggles with this insidious disease.

Thanks, I appreciate that. Best of luck to you too.

49er

SleepingUgly wrote:

49er wrote:As one who can't stay asleep on the pap machine and has zero functioning as a result when I try to use it, I am perplexed as to why you want to exclude people like us since I suspect we are a significant percentage of folks who have have struggled big time with pap therapy. In my opinion, if you are serious about making pap therapy work for as many people as possible, no one should be excluded from studies who could possible benefit.

When I said "exclude", I meant from a (hypothetical) study trying to control for other variables.

Who to exclude and who to include really depends on what it is you are trying to study.

And, in my humble opinion, several things need to be much more thoroughly investigated using properly designed scientific studies. A few right off the top of my head:

Why do some PAPers have so many problems with aerophagia---even at low pressures and even after they've been using PAP for a long time?
Obviously you'd want to include folks with aerophagia and folks without as a control group. But in that group with aerophagia, you'd probably want some subpopulations: It's frequently speculated that GERD and aerophagia are at least correlated, but is there any real data? If they are correlated, is there a causative relation? If so, does pre-existing GERD put one at substantially higher risk for aerophagia or does aerophagia somehow lead to GERD? Is aerophagia correlated in any way to an increase in sponataneous arousals? It's also frequently speculated that problems with aerophagia can lead new PAPers to abandon therapy for comfort issues. So it would be useful to find out: How many people give up PAPing in the first month primarily due to aerophagia instead of other comfort issues? How many people give up PAPing between one month and six months primarily due to aerophagia instead of other comfort issues? How many people continue to use PAP for a year or more in spite of having serious on-going aerophagia issues? Why don't these long term compliant folks with serious aerophagia just give up? And which of the commonly recommended anti-aerophagia tips are most effective for large numbers of people? And are there commonly recommended anti-aerophagia measures that really aren't effective? Is an appropriate (narrow) auto range likely to lead to fewer problems with aerophagia than an appropriate fixed pressure machine? Is exhalation relief really the answer? Or can that make aerophagia worse? And can "switch to BiPAP for aerophagia" be demonstrated in a RCT to be an effective measure? When should such a switch be recommended?


Why do some PAPers have so many problems with insomnia after they start PAPing and report a sudden and sharp drop in subjective sleep quality?
You might very well want to exclude anybody who's currently experiencing a common "comfort" complaint from this kind of a study. Or allow certain "comfort" complaints and not others. But regardless of who you would include or not, it would be useful for someone who knows what they're looking at to compare a whole lotta in-lab sleep tests from experienced PAPers who still report problems with getting to sleep and staying asleep when using the machine to those who don't report such problems. Is the problem really that spontaneous arousals cause the problem even though the number of spontaneous arousals is considerably lower than the number of respiratory-related arousals on the diagnostic test?? Are there measurable characteristics of newly diagnosed patients that might identify which populations are at particularly high risk of developing severe problems with insomnia once they start on CPAP? Are sleeping pills really the best intervention? Which pills are most effective? at what dose? and for how long??? How many people give up PAPing in the first month because of insomnia? How many give up PAPing between one month and six months of therapy because of long term insomnia problems? How many people remain compliant for a year even if their insomnia problems don't resolve? And why don't they give up? Would folks with insomnia be better off on fixed pressure instead of a (narrow) auto range?


Are chinstraps with nasal masks as effective for a typical mouth breather as a FFM? Are chinstraps with nasal masks actually any more comfortable for large numbers of mouth breathers?
In addition to getting some hard data behind the common recommendations for leaks caused by mouth breathing, there's a whole bunch of issues that could be studied that would result in some real improvements in how folks with mouth breathing issues are treated by the DMEs and the sleep docs: How many OSA patients are habitual mouth breathers who do NOT have structural problems in the nasal cavity to cause the mouth breathing? In this subpopulation are there effective, reliable ways to teach nasal breathing? Is it worth trying to get this subpopulation to become nasal breathers in terms of either comfort or effectiveness of therapy? Are newly diagnosed OSA patients with run of the mill nasal allergies at more risk for mouth breathing than those without nasal allergies?


Why is Excessive Daytime Sleepiness NOT relieved for a rather significant minority of PAPers who reported EDS as a symptom before their formal diagnosis?
I've seen figures saying that something like 10-15% of the OSA population that had EDS symptoms before their diagnosis, do NOT manage to get much relief from PAPing even after they become compliant and stay compliant for several months to several years. Common speculation around here is that the pre-CPAP damage to the body is just too great to fully heal or some such thing. But is that really the case? Is it possible that many PAPers who don't start feeling better in, say, six months of full-time PAPing actually have other, possibly undiagnosed, medical conditions that can explain the continued EDS in spite of the OSA being treated? Is there a strong correlation between certain medical conditions continued problems with EDS? Is it possible that PAP itself is disrupting their sleep? And it is worth trying to establish how many people give up on PAP too soon: How long does it take the average PAPer to notice a positive difference in terms of relief of EDS symptoms? A week? A month? Three months? Is the severity of the pre-CPAP EDS symptoms tightly correlated to the length of time on PAP that it takes for the patient to feel some real relief of EDS symptoms? Are many of the people who just give up in the first month (or three months) expecting too much from PAP too soon? How many people give up PAPing in less than a month because they don't notice any difference in how they feel?


Can quality patient education lead to more patients continuing therapy long to get over the initial common difficulties that often lead to newbies abandoning CPAP therapy? Things like patient brochures and videos targeted to patients have been studied. Things like "appropriate follow up from the DME or sleep doc" have been studied. But would increasing the availability of patient support groups help? Would patients benefit from an OSA/CPAP "training class" where they get to talk to experience PAPers rather than just the professionals treating them? What kind of things might make new patients that are at high risk of abandoning therapy simply feel less alone in their nightly battle with the machine? What kind of patient education classes would reduce the sense of being overwhelmed by everything at the beginning of PAP therapy?