CPAPtalk.com

... then what?

I was here briefly a year ago, at which time I got some useful advice and went off to use it. (I also have a feeling I made rather a fool of myself; if anyone was offended, then I offer apologies, because it wasn't intentional.) It's been a while, I know, but I've returned because I still need help, and I find I now have two problems to consider instead of the original one.

Long story short, when I first posted I had just done a home sleep study and didn't think the pulmonologist was dealing squarely with me. You folks advised me to get a full copy of the study results, rather than depend on what the doc had told me in a phone call. When I asked for that full copy, the pulmonologist's office instead said "if you have questions, make an appointment with your doctor or with the one who actually did the analysis." That was strike three for that doc as far as I was concerned, so instead I got a referral to a different pulmonologist in an entirely different clinic.

Pulmonologist #2 proved to be much better. She was able to get a copy of the home study results and gave it to me, at which time I discovered that #1 had screwed up their analysis, and as far as I could tell the study was worthless. I tried a couple of other things to improve my sleeping, but neither worked; quite the opposite, my sleeping got a whole lot worse over the summer. So I went back to doc #2, and she suggested a split-protocol study to check the home-study results and also try a basic cpap machine. That happened on Oct 3rd, and the doc's office called me this past Friday to give me the results. They also posted the full study results to my patient portal account, so I have the whole thing as a pdf. I lack the expertise to understand all of it, but three essential points come through loud and clear:

• 1. the in-lab study confirmed the results of the home study: I have a LOT of trouble with breathing while I'm asleep. In fact the in-lab results were worse: where the home study concluded I was having sixty-odd "events" per hour, the lab study AHI was 87. I have reason to think that was somewhat exaggerated by the test conditions, but even if it was, it's still an awful score.
  
  2. To quote the report, I "did not tolerate cpap well." I need a nose-and-mouth mask due to chronic sinus congestion, so they used what I believe was a ResMed F20 AirFit mask. I could handle it okay at low pressures, but as the pressure increased so did the discomfort. We tried the test cycle twice, and both times I gave up at a setting of around 20. It felt like facing into a strong wind (>25mph at least) with my mouth wide open and unable to close it. And any movement made the mask start leaking. At one point it was leaking on both sides of my nose, with the airflow blasting straight up across my eyes. Completely intolerable. I can't imagine being able to sleep like that.
  
  3. Also quoting the report, "A therapeutic pressure was not achieved due to treatment emergent central apnea and intolerance. The PAP AHI=72 including CAHI=41 and lowest oxygen saturation = 81%." If I understand that right, it means that even at a higher pressure than I could tolerate, it wasn't doing me any good.

The doctor recommends that I visit one of their local DMEs and get fitted for a mask and cpap machine, and try using it at a setting of 10 for a week to see if my tolerance improves. If not, then "further titration with BiPAP s/t or ASV would be warranted." (Am I right that ASV is the same thing as "auto-pap"?)

So that's problem #1: what does one do when one's condition is so bad that the "gold standard" treatment doesn't help? It's possible that the conditions of the test made things worse than they would be at home in my own bed, but that's nothing to count on. I see no chance whatsoever that I could get to sleep with a gale-force wind blowing into my mouth all the time.

Problem #2 is that I still hate the whole idea. I hate the thought of depending on a machine just to breathe properly. (I should probably mention that I'm a computer programmer in mundane life, and I know exactly how slapdash and failure-prone most computer programs are -- even medical-device programs.) I hate the thought of having to put on that damn mask every single night for the rest of my life. I hate the idea of turning bedtime from "a time to relax" to "a multiple-step checklist for the machine, the hoses and attachment points, and finally putting on the mask multiple times until I'm sure it isn't going to come off or spring a leak the instant my head hits the pillow." I hate the thought of trying to travel with a pap machine in addition to a large suitcase, carry-on, and large camera bag/backpack. And I hate the thought that I need this to ever have a decent night's sleep again. Hating the machine, hating having to use it, hating the very sight of it ... what kind of a life is that?

I know that no one here can help me with problem #2. That solution has to come from me. About problem #1, however...

Has anyone here had a similar experience? What did you do about it?

PhotoWolf wrote: ↑

Wed Oct 16, 2024 8:26 pm

Am I right that ASV is the same thing as "auto-pap"?

No...you are quite incorrect. Not the same thing at all.

Sounds like you might want to check to see if you would qualify for the Inspire procedure.....be aware that not everyone qualifies for it and it comes with some rather ugly baggage as well.

I'm no expert like some of the people here so this is just fwiw, but I was wondering if maybe you need a 2 pronged attack in dealing with the congestion and also the sleep apnea? Have you seen an ENT and/or allergist? Do you have allergies that cause the congestion that could be treated?

I wouldn't worry so much about your second concern because if the machine malfunctions, the worst is that you are back to breathing as you are now. In my 15 years of using APAP I have had only a few incidents where my machine quit working during the night. It's a rude awakening but I don't think it would be life threatening unless you have a full face mask and some kind of disorder that would keep you from awakening when you aren't getting air?

PhotoWolf,

Nope, ASV is a whole different kettle of fish.

CPAP stands for continuous positive airway pressure. You get the same pressure breathing as breathing out. I know lots of people who do great with these. Myself, I couldn't handle it.

APAP is Automatic Positive Airway Pressure and relies on the same principles as CPAP. APAP's pressure settings are not limited to a single pressure, but to a range of pressures. These machines are built to fluctuate within this range of pressures automatically when it delivers air. It depends on algorithms inside the machine which sense subtle breathing changes that take place throughout the night.

BIPAP is Bilevel Positive Air Pressure. BiPAP (sometimes BPAP) is set up to provide dual pressures: one for inhalation (IPAP) and another (lower) pressure for exhalation (EPAP). This therapy can also be set to match a person's breaths-per-minute rate or to sense a significant shift in their breathing and compensate for it by adjusting pressures so the person can maintain a steady pattern. Some people do not tolerate the single continuous pressure delivered in CPAP. Either the pressure itself is too high for them to adjust to, or they struggle to exhale against the incoming single pressure. BiPAP allows them to have a lighter EPAP pressure to make it easier to exhale. Also, folks with specific kinds of lung disorders (chronic obstructive pulmonary disorder, or COPD) or congestive heart failure (CHF) may benefit from using bilevel PAP. People who experience central sleep apnea may also use BiPAP to good outcomes.

ASV stands for adaptive servo ventilation. It is the most sophisticated form of pap machine and its use is reserved for specific kinds of patients. I'm one. ASV machines are designed to treat CSA, mixed sleep apnea (a combination of obstructive and central respiratory events), and something known as Cheyne-Stokes respiration, in which abnormal breathing patterns take on a crescendo-decrescendo effect that results apnea.

From your description, I suspect you are going to need a bilevel at the least, and if you have centrals trying to reach therapeutic pressure, the ASV might be warranted.

Now, I don't deal with full face masks a all. On me, they leak like crazy, and the air blowing in my eyes is miserable. But they work for some people. (Several of the more popular masks do not work at ALL for me -- and yet the folks who do use them love them.

I would probably offer as a suggestion the mask I use when I have a respiratory infection. My standard mask is the Tap Pap which is a nasal pillow mask with no straps that fit in my mouth. I love it, but since you have the sinus issues, it's not going to be for you. When I have a respiratory infection and can't use the tap pap, I use a Mirage Liberty (Resmed) which has the mouth-mask and then the nasal pillows as well. So one doesn't have that blasted triangular thing mashed over one's face.

Recognize that you may have to try a number of masks before you find one which works for you. FInd out what your DME's mask return policy is. You can get a mask, try it for a week or so, and if it doesn't work, return it for a different one until you find one which you can tolerate.

One thing I will suggest is, when you have a mask, learn how to put it on without it being attached to the machine. Then spend 10-15 minutes reading, or whatever, with the mask in place, just breathing in and out, which you will be able to do since the end of the tube will be open. Then take it off, and go about your business. Gradually increase the amount of time you spend with it. This serves two purposes. 1. You get used to breathing with the blasted bedamned mask on, and 2. you learn how to put it on and off correctly without it throwing you into a panic at bedtime. (My husband had a hard time getting used to getting the mask on because he categorically refused to surrender his beard and mustache, and the long hair made it hard to adjust the straps.)

Pugsy wrote: ↑

Wed Oct 16, 2024 8:40 pm

Sounds like you might want to check to see if you would qualify for the Inspire procedure.....be aware that not everyone qualifies for it and it comes with some rather ugly baggage as well.

Now that catches my attention. I've been seeing a bunch of ads for the device, but noted that they mention it's probably not for plus-sized people so that means it would be right out for me.

What baggage does the device have, other than requiring surgery and fiddling around with the nervous system?

ILoveFlowers wrote: ↑

Thu Oct 17, 2024 12:28 am

I'm no expert like some of the people here so this is just fwiw, but I was wondering if maybe you need a 2 pronged attack in dealing with the congestion and also the sleep apnea? Have you seen an ENT and/or allergist? Do you have allergies that cause the congestion that could be treated?

It's a valid thought and a good question. I haven't seen a specialist about the congestion because it doesn't seem to have a single cause. Tracking down all the different causes and then figuring out how to counter them seems like it could get very, very expensive. Until now, it just didn't seem worth the trouble and expense to do so.

Just to be annoying - you could even just be e.g. allergic to your cat... or something. It happens.

PhotoWolf wrote: ↑

Thu Oct 17, 2024 8:25 pm

ILoveFlowers wrote: ↑

Thu Oct 17, 2024 12:28 am

I'm no expert like some of the people here so this is just fwiw, but I was wondering if maybe you need a 2 pronged attack in dealing with the congestion and also the sleep apnea? Have you seen an ENT and/or allergist? Do you have allergies that cause the congestion that could be treated?

It's a valid thought and a good question. I haven't seen a specialist about the congestion because it doesn't seem to have a single cause. Tracking down all the different causes and then figuring out how to counter them seems like it could get very, very expensive. Until now, it just didn't seem worth the trouble and expense to do so.

Treating nasal congestion does not mean you have to get to all of the "different causes" and somehow fix them. It means treating the symptoms: If you can get the nose to be clearer of the congestion and remain reasonably clear of the congestion most of the time, then that's all that's needed. In other words, achieving the goal of easier breathing through the nose does not mean you have to track down all the possible causes.

If nasal allergies are one of the causes, then using something like flonase every night is a reasonable solution, both in terms of treating the congestion and inflammation caused by the allergies and the cost. Or taking a cheap OTC nasal antihistamine when the allergies are acting up is another way of dealing with unspecified nasal allergy symptoms.

If the problem has other causes, treating the symptom of nasal congestion with things like saline nasal sprays and saline nasal washes (i.e. a neti pot) may go a long way in making it easier to breathe through the nose.

PhotoWolf wrote: ↑

Wed Oct 16, 2024 8:26 pm

They also posted the full study results to my patient portal account, so I have the whole thing as a pdf.

If you want our opinion on the sleep study report, you will need to block out the personal information and post an image of the pdf pages.

I lack the expertise to understand all of it, but three essential points come through loud and clear:

• 1. the in-lab study confirmed the results of the home study: I have a LOT of trouble with breathing while I'm asleep. In fact the in-lab results were worse: where the home study concluded I was having sixty-odd "events" per hour, the lab study AHI was 87. I have reason to think that was somewhat exaggerated by the test conditions, but even if it was, it's still an awful score.

A home test with 60+ events per hour and a lab study with an AHI = 87 both say loud and clear: You have severe obstructive sleep apnea. Even if the lab test conditions somehow exaggerated the situation, it didn't quadruple the number of events per our.

• 2. To quote the report, I "did not tolerate cpap well." I need a nose-and-mouth mask due to chronic sinus congestion, so they used what I believe was a ResMed F20 AirFit mask. I could handle it okay at low pressures, but as the pressure increased so did the discomfort. We tried the test cycle twice, and both times I gave up at a setting of around 20. It felt like facing into a strong wind (>25mph at least) with my mouth wide open and unable to close it. And any movement made the mask start leaking. At one point it was leaking on both sides of my nose, with the airflow blasting straight up across my eyes. Completely intolerable. I can't imagine being able to sleep like that.

There's a lot to unpack here.

First: You had a trial on CPAP that lasted maybe all of 4 hours in a lab situation. Just like you suspect the lab setting of the diagnostic half of the test may have exaggerated the AHI, the lab setting for the titration may have caused additional problems with "tolerating" CPAP.

Second: There are plenty of people here with chronic congestion problems who use nasal masks or nasal pillows masks successfully. In other words, neither the doctor nor the tech nor yourself have any idea of whether a nasal mask or a nasal pillows mask would have been easier for you to tolerate. The questions that need to be answered before dismissing the idea of a nasal mask outright include:

• Do you mouth breathe consistently during the daytime? If not, then there's a good reason to believe that you won't necessarily mouth breathe in your sleep.
• Can the nasal congestion be treated through using things like Flonase and/or saline nasal sprays and/or a neti pot (nasal rinse)? If so, are you willing to do that in order to use a nasal mask?
• If you sometimes mouth breathe for long periods of time, are you willing to consider taping the mouth or using a chin strap?

Third: You said they did the test cycle twice and you could not tolerate a pressure of 20cm. There was no good reason for running the mask fit test while having the pressure increase to 20cm. Most people do not need pressures that high. Many people, even those with severe untreated OSA need pressures that are much more modest (i.e. around 10cm) to sufficiently control their OSA. Also worth pointing out that almost everybody feels like there's a gale force wind blowing at their face the very first time they put on a CPAP mask---even if the pressure is quite low. But most of us do manage to get used to the feeling after using a mask for a while.

Fourth: If any movement triggered leaks, then the mask was simply not fit correctly. Yes, you would think the techs running these sleep tests would have a decent handle on how to fit a mask. But many (most) of them have never worn a CPAP mask themselves and most of them haven't actually read the fitting instructions for the mask they hand the patient. The ResMed F20 AirFit mask uses an air cushion to seal the mask. A common mistake in fitting the mask is to over tighten the straps: Over tightening the straps prevents the air cushion from fully inflating, and a cushion that is not fully inflated is far more prone to pesky leaking whenever you move around in bed. And yet, far too many techs simply tighten and tighten and tighten the straps over and over when leaks are present.

Fifth: A properly fit mask should not blow air directly into your eyes. It could also be the case that the tech used a mask that was the wrong size for your face. Also, nasal pillows masks and hybrid masks may be less prone to leaking around the top allowing air to blow directly into your eyes.

• 3. Also quoting the report, "A therapeutic pressure was not achieved due to treatment emergent central apnea and intolerance. The PAP AHI=72 including CAHI=41 and lowest oxygen saturation = 81%." If I understand that right, it means that even at a higher pressure than I could tolerate, it wasn't doing me any good.

What you have left out is this:

• What were the pressures that were actually tried during the CPAP trial? And what pressure led to the smallest AHI even if that AHI was not particularly great?
• At what pressure did the treatment emergent central apneas start? (They are usually absent in pressures that are less than 10 cm.) And how many central apneas are we talking about? In other words, what was the CAI at each of the pressures that were tried during the CPAP trial?
• At what pressure setting was the SaO2 = 81% recorded? If it occurred at a low pressure near the beginning of the CPAP trial, then you really can't conclude that CPAP at any pressure (that you can tolerate) will do you no good.

The doctor recommends that I visit one of their local DMEs and get fitted for a mask and cpap machine, and try using it at a setting of 10 for a week to see if my tolerance improves. If not, then "further titration with BiPAP s/t or ASV would be warranted." (Am I right that ASV is the same thing as "auto-pap"?)

Personally I think this doctor's recommendation is reasonable, albeit I would have preferred to see the doctor recommend a trial on APAP with a pressure range of something like 7-10cm. For many people these days, the doctors skip an in-lab titration completely and use a week or two trial of APAP (usually set wide open at 4-20cm) before settling on a prescribed pressure based on the results recorded by the machine.

In your case: I think the doc is recommending a fixed pressure of 10cm because treatment emergent central apnea usually does not emerge until the pressure is greater than 10cm. Your sleep test reports would indicate what the pressure setting was when the CAs became problematic.

It's also worth noting that your doctor is aware that there is a chance that the treatment emergent CAs may continue to be a problem even at 10cm, and that's why the doc is documenting that there may need to be a trial on a bilevel S/T or ASV machine. Both of these machines are programmed to drastically increase just the inhalation pressure (IPAP) in order to "trigger" an inhalation when the breathing pattern indicates that the start of a CO2 overshoot/undershoot cycle is beginning. (CO2 overshoot/undershoot cycles are what causes treatment emergent CAs that occur in enough numbers to be problematic.)

So that's problem #1: what does one do when one's condition is so bad that the "gold standard" treatment doesn't help? It's possible that the conditions of the test made things worse than they would be at home in my own bed, but that's nothing to count on. I see no chance whatsoever that I could get to sleep with a gale-force wind blowing into my mouth all the time.

The "gold standard" has been given a 4 hour trial in highly artificial circumstances---i.e. an in-lab test where you have admitted that it was difficult to sleep in a normal fashion for yourself.

The doctor has also given you the roadmap for the standard back-up plan: When a person with severe sleep apnea has a problem with treatment emergent central apnea that does not resolve itself in a few weeks, the standard is to then titrate the person using a bilevel ST or ASV machine, both of which are designed to central sleep apnea by triggering inhalations when the breathing pattern indicates that the start of a CO2 overshoot/undershoot cycle is beginning. By triggering the inhalations, that prevents the CO2 overshoot/undershoot cycle from developing and hence it prevents the CAs from happening. At the same time, bilevel S/T and ASV machines provide the pressure needed to prevent the obstructive events from occurring.

As for "the gale-force wind blowing into your mouth all the time": As I explained earlier, many new CPAPers feel the same way, even at very low pressures. (I certainly did.) But if your machine is set up where the pressure is rather low (4-7cm) at the start of the night when you are trying to get to sleep, your body may very well adjust to accepting the higher pressures when they are needed because the body will learn the advantage of not having to arouse and not having to deal with significant O2 drops all night long.

If the week or two long trial on CPAP is a genuine disaster, then you might also want to investigate the Inspire device or an oral appliance. The Inspire comes with its own set of baggage, including invasive surgery needed to implant it. Oral appliances are not likely to be anywhere near as effective in treating your OSA, but with severe OSA, cutting the number of apneas you experience in half is better than nothing.

Problem #2 is that I still hate the whole idea. I hate the thought of depending on a machine just to breathe properly.

Every new CPAPer says this. And truth be told, most of us long time CPAPers still don't like the idea that we depend on a machine to breathe properly at night. But what we've also learned is that the benefits of waking up without our pre-diagnosis OSA symptoms are worth the trouble of making this crazy therapy work.

Fact is: Being diagnosed with a chronic medical condition that will never be cured, but can be managed with daily effort, is never fun. It always brings us face-to-face with our own mortality in one way or another. And a lot of folks go through a real mourning process after being diagnosed with something like OSA---they're mourning for their "before" life when sleep seemed easy. But that darn diagnostic study proved that something as seemingly simple as "breathing while sleeping" is something that your particular body just can't manage to do on its own. And you're not alone: My body and the body of everybody else here at cpaptalk also cannot manage the seemingly simple task of "breathing while sleeping". And many of us went through the same "I hate the whole thing" you are going through right now.

(I should probably mention that I'm a computer programmer in mundane life, and I know exactly how slapdash and failure-prone most computer programs are -- even medical-device programs.)

Yes, computer programs are full of bugs. But you are using that fact in an attempt to come up with what sounds like a valid reason to just declare "CPAP ain't ever gonna work for me and my sleep apnea is just something I'll continue to live with because, well, it ain't killed me yet."

I hate the thought of having to put on that damn mask every single night for the rest of my life.

Every new CPAPer goes through this. No one wants to put that damn mask on every single night for the rest of their life, particularly at the start.

When I was in the middle of my very long and very difficult adjustment to CPAP, I learned to deal with that overwhelming thought the same way a recovering alcoholic stays sober: I told myself that just for tonight I'll put the mask on my nose---just for tonight. I'll deal with the decision for tomorrow night and all those future nights when they arrive in my bedroom. But I'll go ahead and put the damn mask on just for tonight.

I hate the idea of turning bedtime from "a time to relax" to "a multiple-step checklist for the machine, the hoses and attachment points, and finally putting on the mask multiple times until I'm sure it isn't going to come off or spring a leak the instant my head hits the pillow."

There are all kinds of things that we can help you with for this. The simplest is this basic fact: You don't have to dismantle everything every single morning. And if you do choose to do things like wash/wipe the mask every day or dump the humidifier every day, there's nothing that prevents you from putting everything back together right after supper. And that way when bedtime comes it really is a mater of pull the mask on and turn the machine on and relax and go to sleep.

With just a little bit of experience you'll learn how to have your head "hit the pillow" without it immediately triggering a leak.

And it's particularly important at the beginning to learn to not worry about everything being perfect.

So what if your mask springs a leak? If it doesn't wake you up, it's not really a problem. If it does wake you up, there are some quick things to try to fix the leak so you can go back to sleep quickly.

So what if your mask comes off in your sleep? If you wake up, you can just put the mask back on and turn the machine back on.

I hate the thought of trying to travel with a pap machine in addition to a large suitcase, carry-on, and large camera bag/backpack.

Again, this is part of the mourning process. The carry case for a CPAP is rather small and as someone who has done traveling (including a 6 week trip through Europe) with a suitcase, heavy backpack plus camera equipment, you just figure out a way to do it.

And I hate the thought that I need this to ever have a decent night's sleep again. Hating the machine, hating having to use it, hating the very sight of it ... what kind of a life is that?

Been there, done that, and have the scars to prove it.

I going to be honest: The HATE, HATE, HATE, HATE, thing is something I had to confront while struggling with a cpap adjustment from hell. I finally wound up dealing with the HATE, HATE, HATE, HATE thing in counseling with a good CBT psychologist. I needed a significant kick in the butt in order to learn (the hard way) that HATE, HATE, HATE, HATE was just making me even more miserable. The big (silly) sounding suggestion that worked for me was the CBT guy telling me: Find a different, less loaded word than HATE to describe your dislike of everything connected to CPAP. That way you will finally convince yourself that there are things worse than having to deal with a CPAP machine and that you will be able to count your blessings that it is only a CPAP machine that you are dealing with instead of, say, chemotherapy for an aggressive cancer or a diagnosis of Parkinson's disease or some other thing that is far worse than CPAP.

Has anyone here had a similar experience? What did you do about it?

As you can tell, yes, I've had a similar experience. You can search for posts from robysue (not robyse1) from 2010 and 2011 and you'll see just how awful my adjustment was and just what I had to do in order to become a happy PAPer.

Gotta go teach my Calculus III class.

You've already gotten a lot of great information and perspective. I hope that helps. A couple of quick additional thoughts.

I recommend that you ask for a ResMed Airsense 10 Autoset machine if your doctor is starting you out with a regular PAP machine. It's tried and true, and you can use its nightly data either in the Oscar program or via SleepHQ. Both are free. You'll want to be sure you have an SD card in your machine.

The question whether you mouth-breathe during the day is an important one. If you don't, it would make sense for you to try a nasal pillow mask or a nasal mask. These will be a lot less likely to leak since they need to make a lot less contact with the contours of your face.

When you get your machine and a mask, set the machine up outside your bedroom and use it during the day or evening while you read, watch TV, use your devices, or do something else sedentary and mildly diverting. This will help you get used to the new experience. I myself would recommend doing this for at least several days before trying night-time use.

This may sound odd, but my little night-time routine putting my mask on actually makes me sleepy. I think that's because I now associate it with bedtime and sleep time. And as others have noted, there's a fair amount your DME may recommend that you do that you don't actually need to do, and some of the things you do need to do you can do during the day. So the night-time ritual can be pretty simple.

Wow, a lot of stuff to think about here. Thanks VERY much, robysue1: you're right, these are precisely the sort of questions I need to be asking.

robysue1 wrote: ↑

Fri Oct 18, 2024 7:28 am

Treating nasal congestion does not mean you have to get to all of the "different causes" and somehow fix them. It means treating the symptoms: If you can get the nose to be clearer of the congestion and remain reasonably clear of the congestion most of the time, then that's all that's needed. In other words, achieving the goal of easier breathing through the nose does not mean you have to track down all the possible causes.

If nasal allergies are one of the causes, then using something like flonase every night is a reasonable solution, both in terms of treating the congestion and inflammation caused by the allergies and the cost. Or taking a cheap OTC nasal antihistamine when the allergies are acting up is another way of dealing with unspecified nasal allergy symptoms.

If the problem has other causes, treating the symptom of nasal congestion with things like saline nasal sprays and saline nasal washes (i.e. a neti pot) may go a long way in making it easier to breathe through the nose.

Around a dozen years ago I asked my then-doctor about the congestion, which bothers me all the time, some days worse than others. He had me try a five-day course of prednisone, flonase and ... something else, I don't remember what. About all I remember of the effects is that's when I discovered I'm sensitive to prednisone. Otherwise, none of the three seemed to help with the congestion. These days I use Simply Saline nasal spray most nights. It definitely helps, but it doesn't last the whole night. Most other OTC decongestants are off-limits because they contain pseudoephedrine. I had an episode of a-fib in 2017, cause unknown. I'm on the standard drug combo to prevent a recurrence: diltiazem, flecainide, and low-dose aspirin. So I always have to remember "no NSAIDs and nothing that's associated with irregular heartbeat, like pseudoephedrine." I don't know if flonase is safe for me; that's a question for my cardiologist.

I am often congested and a mouth breather during the day time. I've got to tell you that I am the opposite of those that hate it. I absolutely love my pap machine. I found out that the filtered air and humidity, if I want it, blowing through the nasal mask helps keep my sinuses open and flowing. I put my nasal mask on I can relax. It used to take me hours of tossing and turning to fall asleep now its put the mask on and boom I'm out.

Finding a mask that fit and was comfortable was the hardest part but once I found the one that worked for me and then dialed my settings in it became the best thing ever.

I did follow some really good suggestions I got here. Use it first during the day when you're awake watching tv or reading. Make sure you have the time to fiddle with it and make friends don't try it when you're tired and cranky ready to sleep.
Another good suggestion was put your tongue on the roof of your mouth to make a seal to help keep your mouth shut.

I also personalized it to me. I made my own hose cozy out of a light soft pink flannel material. I've got a heavier one I crocheted out of a soft baby yarn for if it's cold out. It helps muffle any air noise and is much more soft and bedtime friendly than the ugly hose it also helps cut down on rainout If you don't sew or crochet you can buy them on Amazon or there is one place that is commonly recommended I don't remember the name right now but someone will jump in with it if your interested.

Hose hangers, or for me I used a command hook stuck to my headboard for hose management. You just leave it all set up and there it is easy as pie to slip on before bed. Traveling is a pain, I'm not going to lie. I bought extra machines. One I keep at my daughter's house. The other for if I'm traveling somewhere else. My home one stays set up ready to use. The travel one I keep packed with supplies I might need, an extension cord for hard to reach plugs and if you're traveling outside the states you can get adapters. Another good thing to have is a battery, sometimes power goes out or you want to go camping. Lots of good suggestions here if having a battery back up system is something for you.

Just FYI: Flonase can take up to two weeks before it is fully effective.

robysue1 wrote: ↑

Fri Oct 18, 2024 8:41 am

If you want our opinion on the sleep study report, you will need to block out the personal information and post an image of the pdf pages.

I'll do that.

First: You had a trial on CPAP that lasted maybe all of 4 hours in a lab situation. Just like you suspect the lab setting of the diagnostic half of the test may have exaggerated the AHI, the lab setting for the titration may have caused additional problems with "tolerating" CPAP.

That's very possible. Among other things, I usually move around a fair amount, but during the study I didn't, at least while I was awake, because I didn't want to mess up the mask or all the wires.

Second: There are plenty of people here with chronic congestion problems who use nasal masks or nasal pillows masks successfully. In other words, neither the doctor nor the tech nor yourself have any idea of whether a nasal mask or a nasal pillows mask would have been easier for you to tolerate. The questions that need to be answered before dismissing the idea of a nasal mask outright include:

Do you mouth breathe consistently during the daytime? If not, then there's a good reason to believe that you won't necessarily mouth breathe in your sleep.

Yes, I do. I switch back and forth between mouth and nose breathing without thinking about it. If I'm doing anything at all strenuous, so that pulse and respiration increase, mouth breathing is a necessity.

Third: You said they did the test cycle twice and you could not tolerate a pressure of 20cm. There was no good reason for running the mask fit test while having the pressure increase to 20cm. Most people do not need pressures that high. Many people, even those with severe untreated OSA need pressures that are much more modest (i.e. around 10cm) to sufficiently control their OSA. Also worth pointing out that almost everybody feels like there's a gale force wind blowing at their face the very first time they put on a CPAP mask---even if the pressure is quite low. But most of us do manage to get used to the feeling after using a mask for a while.

The study was explained to me as as being in two parts: first to check the results of the home study, second to test my response to cpap. I thought the cpap trial would start at minimal pressure, then increase it gradually, watching the various sensors, until the sensors showed the low-blood-oxygen episodes had dropped to acceptable levels. I said I was sure I'd need a nose-and-mouth mask, so that's what we used.

What actually happened was they started the test cycle at ... 6cm, the report says. I could handle that fine. Increasing pressure didn't give me any particular problem until around ... my guess is somewhere between 12 and 15. At some point after that, I started nudging at the mask trying to relieve the discomfort, and it started leaking and blowing air across my eyes. Trying to reseal it didn't work, so I ripped it off. But I didn't want to give up, so I had them try again, starting over. The second time they reached high pressure I managed to avoid ripping it off, but I still reached a breaking point and requested they take it off. I know the highest pressure reached was 20cm, because that's the highest pressure recorded in the report. I assume they would have gone higher if I had been able to stand it, because of the way the report was phrased: "a therapeutic pressure was never achieved." If "a therapeutic pressure" doesn't mean "a pressure that reduces the apnea events to an acceptable number", then what does it mean?

The rest of your questions look like the data can answer them better than I can, so I'll let them wait until I figure out the best way to redact it for posting.

(I should probably mention that I'm a computer programmer in mundane life, and I know exactly how slapdash and failure-prone most computer programs are -- even medical-device programs.)

Yes, computer programs are full of bugs. But you are using that fact in an attempt to come up with what sounds like a valid reason to just declare "CPAP ain't ever gonna work for me and my sleep apnea is just something I'll continue to live with because, well, it ain't killed me yet."

Actually, I put that in to explain why I don't trust the machine. I also have several reasons for not-trusting any doctor or machine that tries to treat me as just another case of (whatever). It's a truism that 'every patient is different', but in my case I seem to be really different. My current history includes:

• Sensitive to prednisone (<10% of people)
  Caffeine has no noticeable effect on me (<10%)
  Diagnosed with a-fib before age 50 (<2% -- well, maybe 3 or 4% now, with so many people wearing watches that can detect a-fib, but still pretty rare)
  Serious complications after a colonoscopy (<2%)

I've also had some bad experiences with doctors giving me advice that I knew was wrong, like the urgent-care doc who said I could alternate Motrin and Tylenol as painkillers for a case of tendonitis. Motrin is ibuprofen, an NSAID. I can't take NSAIDs because I'm on low-dose aspirin as a mild blood thinner. (Yes, they knew what drugs I take daily; it was in my file.) Tylenol - acetamenophin - is the only OTC painkiller I can safely use.

I hate the idea of turning bedtime from "a time to relax" to "a multiple-step checklist for the machine, the hoses and attachment points, and finally putting on the mask multiple times until I'm sure it isn't going to come off or spring a leak the instant my head hits the pillow."

There are all kinds of things that we can help you with for this. The simplest is this basic fact: You don't have to dismantle everything every single morning. And if you do choose to do things like wash/wipe the mask every day or dump the humidifier every day, there's nothing that prevents you from putting everything back together right after supper. And that way when bedtime comes it really is a mater of pull the mask on and turn the machine on and relax and go to sleep.

With just a little bit of experience you'll learn how to have your head "hit the pillow" without it immediately triggering a leak.

And it's particularly important at the beginning to learn to not worry about everything being perfect.

On an intellectual level, I can understand this, and agree with it. Problem is ... another way in which I'm Odd is that I check and re-check everything. Even if it hasn't been touched since the last time I checked it. It's part of being a programmer, I think: you always have to check for unforeseen error conditions. So I develop a process for something, then check multiple times to make sure the process is being followed.

I know that sounds like I'm making excuses. And maybe I am. I don't know. I don't know where my resistance to this whole idea comes from either. You're quite right that compared to what some people have to live with, CPAP (or bipap, etc.) is a minor thing. And I'm a programmer, dammit. See problem; understand problem; develop solution; apply solution. That's what I do, every day, sometimes multiple times a day.

But I can't do that with this. Why do I hate this so much? I have some ideas, but are they true, or just self-serving rationalizations? I can't tell. I don't understand this problem, so none of my usual problem-solving methods apply. I can't solve a problem I don't understand.

As you can tell, yes, I've had a similar experience. You can search for posts from robysue (not robyse1) from 2010 and 2011 and you'll see just how awful my adjustment was and just what I had to do in order to become a happy PAPer.

I'll do that, f'sure.

Thanks much for your posts; they really are a lot of help.

CPAP did not work for me as I felt I was being smothered. Tried for 4 months. No dice. Went to INSPIRE. Surgery went fine. No pain ect.
INSPIRE was the next and final step. However... one thing they don't do is ask about the character and quality of the patient's insomnia.
IF YOU ARE HAVING TROUBLE FALLING ASLEEP AS ONE OF THE SYMPTOMS OF INSOMNIA INSPIRE WILL NOT WORK! It takes me from 1 to 3 hours to fall asleep if I can (go for days with zero sleep). INSPIRE is tuned to a latency period of 15 minutes to one hour to allow sleep to start - that is as long as can be adjusted for. For me, this means the unit begins the tongue thrusts just as I enter sleep and wakes me up! The doctors insisted that snoring was the symptom of the apneas/hypopneas my in-home study revealed (60 apneas per hour). I don't snore. I am a light sleeper and snoring wakes me up. I don't do it. Then I find the INSPIRE unit, if I do manage to sleep, wakes me up after no more than three hours. This is the same amount of sleep that brought me to seek medical assistance for lack of sleep! WARNING: Unless you are a person who snores loud enough to shake the walls and have no trouble falling asleep THE INSPIRE IS NOT FOR YOU. This is to say unless you are a heavy sleeper, INSPIRE WILL NOT WORK! Before you get the implant, evaluate the nature of your insomnia. If you don't perceive you have insomnia - you fall asleep fast, you THINK you are sleeping but wake up tired, your bedmate says you snore like a freight train, etc. you can probably benefit from INSPIRE. I tried for 5 months to get INSPIRE to work. Sleeping pills were used to get sleep. Three hours later - wide awake! When pills run out - rebound insomnia worse than I have ever experienced lasting 2 weeks. The INSPIRE control unit lies unused in my night stand drawer. After one year of struggles with CPAP and INSPIRE I am right back where I started with Medicare footing the 10's of thousands of $ this useless stuff costed!