New to CPAP/OSA - skepticism, questions, observations

[BlackSpinner]

First of all most people do not see that much improvement in the first month. There is years of damage to your organs that is being healed the first few months. Sleepiness is just one of the more obvious symptoms of OSA and not everyone has it. And just why do you expect it to be solved the first night? When you break a leg it isn't healed just because you got the cast on! You won't run a marathon the first day you take that cast off either and yet you expect instant success with cpap therapy? Many people sleep 12 hours like the dead the first couple of months because their body is using the O2 and time to recuperate.

Cognitively I didn't see that much improvement until 3 months in when I realized I was suddenly zooming through research on data encryption that had my mind boggling 4 months earlier. As a software developer who was constantly researching new methods to satisfy clients needs I know exactly how my brain is functioning. By 3 months I was writing better, faster code then I had been in the last few years. Not only that but my whole enjoyment of my work was back because I knew that when a client dropped a bomb I knew I could solve the problem.

Statistically not everyone wins in the sleepiness stakes. That is a fact. However, strokes, heart attacks, diabetes trump sleepiness any day.

High blood pressure? I am still on mild diuretics but the wild erratic swings are gone.

As far as therapy is concerned, cpap therapy has it over drug therapy and surgery hands down. The side effects are swallowing air and maybe a skin rash. Compare that to chemo and surgery where you can easily die from the side effects. However very few people refuse chemo because they might get nausea, yet every one screams bloody murder about wearing a mask at night while they are sleeping.

[chunkyfrog]

I am one of the 'lucky' ones.
My sleep had been so disrupted, I commonly 'got by' on 3 or 4 hours of sleep a night--
Without cpap, I woke up every few minutes with a hideous headache,
When awakening, I felt like I was trying to get out of the locked bag in the world's worst magic act.
With my lovely machine, I can sleep straight through--or until the alarm tells me I have to go to work--it's wonderful
I don't want to fall asleep without 'air support'--it's just too miserable.
Suffice it to say, I was forgetful, unable to concentrate, and very cranky.
I could fly into a rage or start weeping at the drop of a hat.
People seemed to be dropping their hats a lot. . .
With CPAP, my work performance improved dramatically, along with my mood, my creativity, and my patience.
I found myself with stamina to walk much farther than before, and able to stay alert and on task without constant noshing.
Best of all, my wonderful husband no longer has to put up with my loud snoring at night.

[cosmo]

If you think you're better off with less oxygen, you're delusional.

[nineteencats]

Howdy McDougal,

Welcome!

When I first started using CPAP (started treatment in 2006), I had a very similar experience -- would wake up energized and then be completely wiped out by dark. Since I've probably had apnea forever, and didn't get treated until I was in my 40s, I had a HUGE sleep deficit. It literally took several years before my sleep schedule resembled anything like 'normal.' My understanding of sleep deficit is that it is cumulative and permanent, so for some of us it can take a long time to catch up to the point where our bodies don't want to get as much sleep as they can whenever they can.

My suggestion to you is to stick with CPAP for a year before you decide whether or not it's worth staying on (obviously, trying some different masks if the one you're using continues to give you problems). Also, a lot of us hoseheads tend to have circadian rhythm disorders that complicate things -- I have delayed sleep phase syndrome, which I'm lucky enough to be able to accommodate; if I try to sleep on a dark-to-dawn time schedule, it completely screws me up. On my natural 3 am -- 11 am sleep schedule, with the CPAP, I rarely have daytime sleepiness anymore.

19c

[old64mb]

should i expect to feel better soon?

Welcome. That depends on your definition of 'better.'

All non-backup rate xPAP does is to splint open your airway and smooth flow limitations. Just from eyeballing other comments you've made, expecting the miracle of 'super-charged' from it is a bit much considering what else you have going on:

1. Getting 5-6 hours of sleep per night. For almost everyone, that's massively insufficient.
2. Living on a circadian delayed-phase schedule that is generally murder on cognitive skills and alertness, and having lifelong insomnia on that schedule that will not be resolved with xPAP. (This is presuming you are going to bed as per your posts 12 pm rather than 12 am, and even if they aren't reversed like that, you've got to give yourself sufficient time to settle down from work before sleep in order to not have insomnia.)
3. Very likely mouth breathing - causing occlusion when pressure escapes from where it's supposed to be (airway) versus where it ends up (out of your mouth) - if you are a reported snorer and your AHI drops substantially with a full face mask versus a nasal pillow.
4. In a treated AHI range that is still not where people find optimal results, and I'm presuming that since you never went to a lab for titration, you're using an auto setting on pressure, perhaps a very wide one (which doesn't help either.)
5. Using results from a home study that don't correspond with your diagnosis, since 38 RDIs/(presumed)5 hours of sleep = 7.6 = mild OSA.

While I admire your stamina in skimming 16000 research studies in a week, you may want to step back and actually do some work on educating yourself about sleep disordered breathing and sleep disorders in general first - because it doesn't matter how many studies you read if you don't know how to incorporate them into a basic framework of internal medicine. Two very obvious top level concerns on your conclusions:

1. What you label as a 'headline' blood pressure drop of 1.5 mmHg spectacularly misses the point. If you're familiar with how an apneic event actually manifests, you would find yourself a lot more concerned about the physiological effect of constant nocturnal arousals on both the cardiovascular system (which temporarily spike blood pressure - and is hard to measure via a cuff, meaning far fewer studies that are actually structured properly and relevant), the effect of massive variability of blood pressure on organ damage and on future likelihood of sympathetic hypertension, and last but not least, what happens when, night after night, you don't get the standard nocturnal drop of blood pressure of 15-20% that is generally thought to be really important for extending healthy CV functionality.

2. You don't talk at all about dealing with the other direct head of the beast, which is desats. That is even worse on your organs than hypertension, and I kind of doubt that any of those studies suggest that organs do fine when cell necrosis occurs thanks to nighttime hypoxemia.

My goal here isn't to be harsh - it's to point out that while you can be a impressively self-educated patient, Dr. Google and Dr. Pubmed aren't substitutes for clinical experience. It's impressive you've correctly self-diagnosed part of your problems, but self-treating those problems (and DDXing comorbid conditions) can often be a bit of a stretch.

People here are happy to help you tweak your treatment - you might do better off on a closer range of pressure, or move up to a bilevel, or such - but you've got to get a solid baseline as to what's going on first, and that seems to be lacking. Obviously, it's ultimately up to you to decide if xPAP is helpful, but my recommendation would be to sit down with someone with a medical degree and an AASM certification under their belt and discuss your issues and concerns and sign up for a possible retest in a sleep lab.

Cheers.

[jencat824]

Welcome!
Regarding the Piliaro - that mask is not for everyone. I love it and the headband is not tight on me, but most everyone has found it too tight. There are a large array of masks out there. Try some others, I like the SleepWeaver Elan, I've seen a lot of posters on this forum like the Aloha, as well as the Swift FX. Look at some masks on CPAP.com and you can see from the detailed pictures what you think might work for you.

Sounds like you have a good start with your OSA treatment. Keep it up and you will find the benefits of a longer life with better quality, are worth a little work with the CPAP & masks.
Jen

[kteague]

Hello and welcome. A few thoughts...

I consider the adjustment phase simply that, with no expectations. Any results during the adjustment phase are a bonus. After one has settled in with a mask (or masks) that works for them, after the new sensations are no longer waking them, after one is getting adequate quality sleep consistently over a period of time, after one has determined the effect of any other health issues clouding the picture, THEN one can assess any differences the treatment may or may not be making in how one feels. As when assessing the validity of study conclusions, I believe one cannot expect meaningful results in CPAP treatment until the variables have been ruled out.

I too am skeptical when I read clinical trials and study results. Even with the system of checks and balances, I don't automatically trust what I read. When the evidence is undeniable, that's one thing, but when they appear marginal, seems reasonable to me to be unimpressed. Personally, my family medical history is loaded with land mines. Mitigating my risks could be my best hope for avoiding the fate of others. CPAP is one of the ways I am mitigating my risks. A few years ago I was on 2 blood pressure meds plus 2 water pills to keep my BP down. I now take 1 pill that controls my BP and edema. That's a case study of one that I can trust.

Hope you work through your concerns and can feel a degree of confidence in your treatment decisions.

[DougalMcDougal]

thanks for this reply - its fantastic

i agree that i need to delve into the intricacies of machine settings and sleep disorders in more detail - I have basic knowledge but not uptodate or detailed so that is on my near-term to-do list

a few questions regarding your comments

1. "Using results from a home study that don't correspond with your diagnosis, since 38 RDIs/(presumed)5 hours of sleep = 7.6 = mild OSA."
- i used a home sleep study ordered via the net (but from a reputable place) - the report states my RDI = 38.8/hr, I slept for 7.5 hours that night so I presume that this is consistent with a diagnosis of severe OSA as the result was per hour?
- is RDI directly comparable to AHI?

- i meant to say i get in bed around midnight, fall asleep around 2am and wake up around 7am but am working on getting more sleep by going to bed earlier, although i often find that if i go to bed earlier it just means that i lie there awake for longer until i fall asleep at 2am

2. "Very likely mouth breathing - causing occlusion when pressure escapes from where it's supposed to be (airway) versus where it ends up (out of your mouth) - if you are a reported snorer and your AHI drops substantially with a full face mask versus a nasal pillow."
- i thought i was a nose breather because i felt really comfortable with the pillairo nasal mask (apart from the bleeding it induced) and had no urge to mouth breath - i assumed the higher AHI on the pillairo nights was due to possible leak but it makes sense that it may be due to mouth breathing - it there any way for me to determine which is true i.e. leaks or mouth breathing? i was hoping to use the pillairo in the longer term but it wont be so attractive if I'm a mouth breather ( i dont fancy a chin strap)

3. "In a treated AHI range that is still not where people find optimal results, and I'm presuming that since you never went to a lab for titration, you're using an auto setting on pressure, perhaps a very wide one (which doesn't help either.)"
- what range do people find optimal results 0-3? is 0 commonly attainable?
- i am using the auto setting with a range of 4-20mmHg - my morning reports state a pressure (i presume to be the average overnight?) of between 8-10 - would you recommend i change my range and can i do this myself on the S9 (how do i do it?)

4. i accept your points/advice see a dr and i plan to see a sleep physician at some stage but wanted to educate myself more before doing so. You mention a possible retest in a sleep lab - why??

should i expect to feel better soon?

Welcome. That depends on your definition of 'better.'

All non-backup rate xPAP does is to splint open your airway and smooth flow limitations. Just from eyeballing other comments you've made, expecting the miracle of 'super-charged' from it is a bit much considering what else you have going on:

1. Getting 5-6 hours of sleep per night. For almost everyone, that's massively insufficient.
2. Living on a circadian delayed-phase schedule that is generally murder on cognitive skills and alertness, and having lifelong insomnia on that schedule that will not be resolved with xPAP. (This is presuming you are going to bed as per your posts 12 pm rather than 12 am, and even if they aren't reversed like that, you've got to give yourself sufficient time to settle down from work before sleep in order to not have insomnia.)
3. Very likely mouth breathing - causing occlusion when pressure escapes from where it's supposed to be (airway) versus where it ends up (out of your mouth) - if you are a reported snorer and your AHI drops substantially with a full face mask versus a nasal pillow.
4. In a treated AHI range that is still not where people find optimal results, and I'm presuming that since you never went to a lab for titration, you're using an auto setting on pressure, perhaps a very wide one (which doesn't help either.)
5. Using results from a home study that don't correspond with your diagnosis, since 38 RDIs/(presumed)5 hours of sleep = 7.6 = mild OSA.

While I admire your stamina in skimming 16000 research studies in a week, you may want to step back and actually do some work on educating yourself about sleep disordered breathing and sleep disorders in general first - because it doesn't matter how many studies you read if you don't know how to incorporate them into a basic framework of internal medicine. Two very obvious top level concerns on your conclusions:

1. What you label as a 'headline' blood pressure drop of 1.5 mmHg spectacularly misses the point. If you're familiar with how an apneic event actually manifests, you would find yourself a lot more concerned about the physiological effect of constant nocturnal arousals on both the cardiovascular system (which temporarily spike blood pressure - and is hard to measure via a cuff, meaning far fewer studies that are actually structured properly and relevant), the effect of massive variability of blood pressure on organ damage and on future likelihood of sympathetic hypertension, and last but not least, what happens when, night after night, you don't get the standard nocturnal drop of blood pressure of 15-20% that is generally thought to be really important for extending healthy CV functionality.

2. You don't talk at all about dealing with the other direct head of the beast, which is desats. That is even worse on your organs than hypertension, and I kind of doubt that any of those studies suggest that organs do fine when cell necrosis occurs thanks to nighttime hypoxemia.

My goal here isn't to be harsh - it's to point out that while you can be a impressively self-educated patient, Dr. Google and Dr. Pubmed aren't substitutes for clinical experience. It's impressive you've correctly self-diagnosed part of your problems, but self-treating those problems (and DDXing comorbid conditions) can often be a bit of a stretch.

People here are happy to help you tweak your treatment - you might do better off on a closer range of pressure, or move up to a bilevel, or such - but you've got to get a solid baseline as to what's going on first, and that seems to be lacking. Obviously, it's ultimately up to you to decide if xPAP is helpful, but my recommendation would be to sit down with someone with a medical degree and an AASM certification under their belt and discuss your issues and concerns and sign up for a possible retest in a sleep lab.

Cheers.

[old64mb]

thanks for this reply - its fantastic

Thanks, and glad you took it the right way. And speaking of fragmented sleep, my knee just pulled its once-every-few-months-reminder of 'remember when you were a competitive athlete and didn't care if you felt pain? enjoy the glory days now, sucker, hahahahah!' middle of the night wake-me-up, so a few quick answers before I dust off the medicine cabinet for the night....

1. Ok, 38.8/hr is severe - you omitted the /hr, so thought it was total events. In terms of RDI vs. AHI, it may or may not be comparable; hard to tell unless we know more about how they scored the test. It may or may not include include RERAs, which are not technically hypopneas or apneas causing desats but may (depending on definition and scoring) indicate upper airway limitations that wake you up. With those number it's not a big deal either way; waking up nearly 40 times an hour is a disaster, regardless of cause.

2. Insomnia is a separate issue, and one reason I think a sleep consult will help. Google "sleep discipline", you'll run into the things you'll be recommended to do prior to bed, because the effects of proper sleep discipline generally are equivalent to a hypnotic sleeping pill. 2 hours of sleep latency is something that isn't going to make you feel functional the next morning, and that can and should be improved upon.

3. It could be you're not a mouth breather, but seeing the full face mask cutting AHI in half and your reported snoring would tend to point towards that. However, this and the pressure questions can be answered if we can get some data off your machine, and if it's an S9 Autoset you should be able to do so with either SleepyHead or the Resmed program. I'll let others pass along how to do so. Once you post the data, it's how we can suggest tweaks - like if you are set at 4-20, and your machine routinely leaves you at 8-10, well, 8-10 may be a lot more effective.

As far as targeting 0-3; it's tough, but it's what most people aspire to. Getting it down in the 0-2 range really does seem to help people; there's a consensus that's not proven in literature but is often considered in practice that getting to about 1-2 events per hour is really where you need to be for restful sleep. Anything above 5 means it's not effectively being treated either, since you're right back into mild apnea...which may be better than what you had, but is still presenting problems.

4. Sleep lab will be able to tell you a little more detail about how those events are occurring and titrate your pressure more effectively. It also will give hints as to if there's anything else going on besides apneas and hypopneas, which your machine can only hint at.

So, if you try to get data off your machine and post it people here will help you set it up.

Cheers!

[DougalMcDougal]

when u say the CMS-50F requires extra steps to get the data into Sleepyhead what do you mean?
I like the sound of the device as its more comfortable but extra hassle in transferring data puts me off a bit.

Is the only advantage of the CMS-50D plus over the 50F the cost?
i recall reading somewhere that you can get pulse oximeters that connect to the Resmed S9 - would this be a better option?
the product descriptions for the CMS devices states the provided software is not Mac compatible - I mainly use Macs - will i still be able to get the data off the devices directly onto a Mac easily?

any idea how sensitive pulse oximetry alone is for detecting OSA? my wife and kids snore occasionally but i don;t really think they have OSA and so do not feel its worth getting them tested with sleep studies but perhaps using the pulse oximeter would be a useful cheap/easy screening test instead?

i note the Zeo in your equipment list - do you recommend it?

I reccomend the CMS-50D Plus, which you can download directly into Sleepyhead. The CMS-50F is also a good choice if you plan on using it every night, it is very comfortable to wear and fits more securely, it takes a few extra steps to get the data into Sleepyhead, but no problem. If you don't plan on using Sleepyhead, any recording oximeter with software will do.

[Julie]

Hi, a couple of things - unless someone is watching you, you can't know if you're mouth breathing once you are asleep - it's not something you can gauge when you're awake (and being on Cpap at anything beyond the lowest pressure can begin a new pattern due to the pressure that you otherwise might not have had). And the second thing is that oximetry is definitely 'the' major tip off to having apnea - if you're constantly been woken by apneic events an oximeter will alert you (or sleep techs) to that - it alone cannot tell you (as sleep studies do) if you also have e.g. PLMD, UARs, narcolepsy, or many other sleep problems that may only incidentally register on an oximeter... or not.

You might want to try mouth taping for a few nights in a row to see what your data say and how you feel... do a forum search on taping to get details of how and what type. Chin straps are not always effective and a well fitted full face mask would be the ideal thing to try if you even suspect you might need it (and it's good to have one in any case for times when you have a cold, etc. and are nasally congested).

[Pugsy]

SleepyHead has a Mac version and it will work with your S9 machine. Links are in my signature line.
Get the software reports so that you can see exactly what the leak line is doing with the Pilairo. You might be mouth breathing for maybe only 10 minutes...might be for half the night. Mouth breathing in large amounts shows up with pretty large leaks. Hard to miss them on the reports. Besides...you need to evaluate your pressure needs anyway.

The software for the pulse oximeters is all Windows based. Only way to use it on a Mac is if you set up some sort of virtual Windows on the Mac.

[Julius]

As far as I am concerned the CPAP machine is a Lifesaver for me.
I have been taking blood pressure medications for many years and kept it under control. However it started almost a year ago that I kept waking up in the early morning hours, 2-3 AM with symptoms that I could not catch my breath, having a pressure in my chest and twice ended up in the Emergency room. They kept me in the Hospital for one day and ran all kinds of tests finding out that everything was OK with my heart. Fortunately they did not find any sign of heart attach but my blood pressure was high, however later on during the day my blood pressure was OK.
This kind of problems kept happening to me just about every night and I started to measure my blood pressure when I woke up at around 3 AM. Just about every time it was 200-215/105-110 which scared the hell out of me. When I got up from the bed and sat around in the recliner for 15-20 minutes my blood pressure went down to normal. But when I went back to bed it happened again a couple of hours later, frequently accompanied with a headache.
Finally my PCP sent for a sleep study where they determined that I have Sleep Apnea. A week later a got the machine, a PR Remstar Pro with Cflex and a mask set. After a few days my night time blood pressure was 125-130/75-80 without changing my blood pressure medications.
Ever since I sleep well and my night time blood pressure is normal so is at daytime. So there is no question in my mind that the CPAP machine is my Lifesaver and have to live with it most likely for the rest of my life.

[chunkyfrog]

We recommend consulting with a doctor and/or having a sleep test for a variety of reasons.
First: there is the possibility that someone may have one of the unusual conditions that are contraindications to using CPAP.
Second: many people lack the insurance coverage, and may be better off having self-administered therapy than none at all.
Third: some may be reluctant to get a PSG for other, totally valid reasons. (phobia being one)
Fourth: It is human nature to cover up one's backside--especially when dispensing anonymous medical suggestions/anecdotes.

[DougalMcDougal]

I think must be a nose breather because I had a great night last night with the Pillairo, AHI = 3.4, on for 7.6 hours My 3rd night with the Pillairo and 8th night on cpap
I love the Pillairo because after a few minutes I completely cannot feel it as its so light and I love the sensation of air blowing up my nose - I would probably sleep with it occasionally even if I didn't have OSA I feel.
I used nipple cream for the nose last night but the inner aspect of the tip of my left nostril is still sore but not bleeding at least. I have to return the Pillairo today as it was on 1 week trial but i plan to buy one soon.

Hi, a couple of things - unless someone is watching you, you can't know if you're mouth breathing once you are asleep - it's not something you can gauge when you're awake (and being on Cpap at anything beyond the lowest pressure can begin a new pattern due to the pressure that you otherwise might not have had). And the second thing is that oximetry is definitely 'the'd).