Newbie here with anxiety problem

[Armando]

Hello everyone.
I am a new CPAP user and would like to ask for an opinion.
I was recently diagnosed with OSA via a polysomnographic study and after spending a few days in clinical trials with an "autoset" machine, it was determined that my CPAP preassure should be 12.
It's been 2 weeks since I started with that regime, and I do not feel I'm sleeping better: I am still noticing "micro awakenings" (sorry for the lack of correct term) and, most importantly, I still wake up tired like I did before starting the therapy.
I have spoken with my doctor and she told me to wait a full month until I get used to the regime and then, if I'm not better, to go see her.

I haven't had any discomfort associated with CPAP use (such as runny or blocked nose, dry mouth, feeling of claustrophobia or suffocation, etc), but I do move around at night a lot (always have), and I've noticed some air leaking during the night from when I do. My problem is I am very anxious to avoid leaks, to the point that I am literally loosing sleep about it. Kinda ironic, huh?
I have tried all the masks available in my country and I'm using the one I'm most confortable with.
I'm wondering if I can either be reassured that SOME leakage is normal, and therefore should not feel anxious about it and can rest easier, or if I can increase my preasure a bit to compensate for leaks or what?

Any advice on the subject would be greatly appreciated.

On a related note: I know that setting a preassure lower of what one needs makes the treatment useless because the air won't clear the obstruction and the teraphy won'r help. What happens if, on the other hand, one sets the preassure higher than one needs?


Thank you all for your input.
Armando Arjona

[Julie]

Hi - If you are losing air through your mouth overnight, a higher pressure can make it worse - helping to force your mouth open even more, but while you say you've tried all available masks, you haven't said either which one you do use or whether you've tried a 'full face' mask (just like a nasal one but it extends a bit lower to cover your mouth, allowing you to have it open but not lose the Cpap air). There is something called a 'total' face mask, but it's very different and from what I've heard, has many leak problems. You can look at FF masks on Cpap.com to get an idea what they're like (very many of us wear them) and popular ones are the Quattro and Hybrid... and while you can still have some leaks with those, or with one in the wrong size for you, the basic problem will be addressed.

Click on User Control (just below the logo at the top of the page) and then go to Profile. Fill in all your equipment with full names and model numbers so whenever you post it will all come up under your posting so everyone knows what you use and can try to help. Please use "text" rather than icons (you'll have a choice) which makes it easier for us to read.

[Armando]

Thank you very much for your reply.
I have done as you suggested.

My doctor specifically told me not to use a full face mask. She said that, in my particular case, doing so would incite the bad habit of me sleeping with my mouth open. She said to use a chinstrap instead, which I don't find unconfortable and efectivelly keeps my mouth shut all night.
The air leaks that literally keep me awake at night occur from the bridge of my nose, between my eyes. Sorry for not mentioning that before.

[robysue]

It's been 2 weeks since I started with that regime, and I do not feel I'm sleeping better: I am still noticing "micro awakenings" (sorry for the lack of correct term) and, most importantly, I still wake up tired like I did before starting the therapy.
I have spoken with my doctor and she told me to wait a full month until I get used to the regime and then, if I'm not better, to go see her.

Two weeks is not very long. Sleeping with a hose on your nose is not exactly normal and there is a steep learning curve. And for some of us, that learning curve is extra steep for some reason. For me, it took about 10 solid months of very hard work before I actually started sleeping comfortably with the mask every night and waking up feeling better most mornings. And even now, almost one year into therapy, I've still got some residual problems with insomnia (that started with the start of therapy) and daytime sleepiness (that started with the start of therapy). But on many mornings I am now waking up feeling pretty refreshed and rested even if I only get about 5 or 5 1/2 hours of sleep.

I haven't had any discomfort associated with CPAP use (such as runny or blocked nose, dry mouth, feeling of claustrophobia or suffocation, etc), but I do move around at night a lot (always have), and I've noticed some air leaking during the night from when I do. My problem is I am very anxious to avoid leaks, to the point that I am literally loosing sleep about it. Kinda ironic, huh?

Yes, it's ironic that the therapy designed to help us sleep better and more soundly can, for some of us, trigger serious problems with getting to sleep and staying asleep.

I'm wondering if I can either be reassured that SOME leakage is normal, and therefore should not feel anxious about it and can rest easier, or if I can increase my preasure a bit to compensate for leaks or what?

Some leakage is required: Every mask has a built in intentional leak rate so that we don't rebreathe the CO2 we exhale. The intentional leaks come out through the vents in the mask. Depending on the particular mask and where its vent holes are and how they are aimed, the intentional mask leak coming through those events can be highly irritating to either the hosehead or the hosehead's bed partner.

As for unintentional leaks---there are two kinds of leaks you really need to worry about:

• Leaks that are large enough and long enough to adversely affect the quality of your therapy
• Leaks that are annoying enough to adversely affect your comfort or adversely affects your sleep even if they are not large enough or long enough to adversely affect the quality of your therapy.

Any leak that is small enough to not really hurt the quality of your therapy AND does NOT disturb your sleep or make you uncomfortable can safely be ignored in my humble opinion.

Large leaks that affect your therapy. All the modern machines can accommodate some level of unintentional leaks without seriously compromising therapy. How large is too large? That may depend on the machine brand. Resmed is most open about defining what a leak large enough (and long enough) to cause problems for their machines actually is: On the S9 series, Mr. Red Frowny Face shows up in the sleep report if the 75% Unintentional Leak Rate is 24 L/min or greater. In other words, Resmed's engineers believe the S9's ability to provide quality therapy AND record reasonably accurate data is compromised is when you are leaking at a rate AT or ABOVE 24 L/min for at least 25% of the night. In the ResScan software, there's a Red Line drawn at 24 L/min so it is very easy to spot when leaks are getting large enough to worry about. On the PR System One series there seems to be no documentation anywhere about what constitutes a "Large Leak". I've been using a System One for 9 1/2 months now and I've recorded a exactly ONE minute of Large Leaks even though I know I occasionally (as in a couple of times a month) have short leaks that approach or exceed the magic 24 L/min figure for the Resmed machines.

To really figure out whether your unintentional leaks are big enough and long enough to affect your therapy, you need to be looking at the leak line in the daily detailed data. As long as your TOTAL leak rate relatively flat and close to the mask's intentional leak rate (if that 's what your machine and software report) or your UNINTENTIONAL leak rate is relatively flat and close to 0 (if that's what your machine and software report), then your unintentional leaks are likely NOT affecting the quality of your therapy. And then the question becomes one of comfort.

Smaller leaks that affect your comfort or sleep. If a leak wakes you up because it is blowing in an irritating fashion right in your eyes or directly on your chin and causing discomfort, it's obviously got to be fixed so you can get back to sleep. If you are consistently waking up with a desert-dry mouth, there's some level of mouth leaking going on that's likely highly annoying even if it's not showing up in the leak line as a major leak. If these kinds of annoying leaks are happening multiple times night after night, then you've got a leak issue even if the size of the leaks is not enough to cause problems with the quality of the therapy the machine can provide.

For myself, I typically don't worry at all about unintentional leak rates that are less than 10 L/min since my leaks typically don't last that long and at this level they don't tend to make me uncomfortable. I do start to get concerned when I see leaks lasting 15 minutes or more that that are 15--20L/min or more above my mask's intentional leak rate since I often wake up with significantly chapped lips on mornings following these kinds of leaks. Fortunately, leaks of this magnitude are not that common for me---they occur maybe 2--4 times a month.

On a related note: I know that setting a pressure lower of what one needs makes the treatment useless because the air won't clear the obstruction and the therapy won'r help. What happens if, on the other hand, one sets the pressure higher than one needs?

First to clarify a misunderstanding: The CPAP air doesn't actually "clear" an obstruction---rather the CPAP air props your airway open making it more difficult for the airway to collapse in the first place. And the system is not perfect: Even with quality therapy you'll likely continue to have the occasional apnea and hypopnea occurring, where "occasional" technically means "less than 5 of them occurring in an average hour of sleep". Even APAPs don't try to "clear" the obstruction. What an APAP does is respond to events: After a couple of events occur in relatively quick succession, the machine will raise the pressure in an effort to prevent further events from occurring. Exactly what events will "count" and how many event have to happen in how short of a time frame before the APAP decides to raise the pressure varies from manufacturer to manufacturer. Each maker of APAPs has their own proprietary algorithm for adjusting the pressure in response to detected respiratory events.

Using a subtherapeutic pressure can allow too many events to happen, so the OSA is not controlled. But it may prevent enough of the events to help a person feel marginally better than without CPAP. And sometimes starting with a subtherapeutic pressure may help a person suffering serious aerophagia issues slowly build up to where they can use their full therapeutic pressure. Sometimes ramping up from 2 or 3 cm below the set therapeutic pressure may help a person be more comfortable while working on falling asleep with the hose on their nose.

In addition to creating more problems with leaks, using a pressure that's too high can simply lead to discomfort---aerophagia is more of a problem for folks with higher pressures than with lower pressures. And for a few people, using a pressure that's too high may lead to the person having enough central apneas for the CAs to be a problem in their own right. If enough centrals start to develop at a person's minimum therapeutic pressure, they may wind up diagnosed with Complex Sleep Apnea instead of OSA. CompSA is more difficult to treat than OSA because there's a delicate dance that has to be done between finding enough pressure to control the OSA without triggering the CAs that are equally bad for the body

[Resister]

At 2 weeks, you're still so new to the therapy that it's normal to feel like you're more awake at night than before. I didn't start feeling like I was actually asleep until about 6 weeks in, and even now (over 2 months) I still have nights where it feels like I'm awake a good deal. (Thankfully last night was not one of them!) It simply takes a while to adjust, and it's different for everyone.

[BlackSpinner]

Thank you very much for your reply.
I have done as you suggested.

My doctor specifically told me not to use a full face mask. She said that, in my particular case, doing so would incite the bad habit of me sleeping with my mouth open. She said to use a chinstrap instead, which I don't find unconfortable and efectivelly keeps my mouth shut all night.
The air leaks that literally keep me awake at night occur from the bridge of my nose, between my eyes. Sorry for not mentioning that before.

Yes well your doctor is not the one trying to sleep with. Ignore her and find a comfortable full face mask or one like the Hybrid.

Be very careful with leaks around the eyes as they my cause dry eyes problem.

[Julie]

Hi again - That happens a lot (the leaks at the top of the mask) but I just pull the mask lower on my face, jiggle it around a bit and then hold it away for a second so the seal inflates properly again in the new location... it seems basic, and maybe you've tried it, but thought I'd just mention it in case you haven't.

[moresleep]

An alternative to a regular nasal mask (which covers the nose) is a nasal pillows mask (which just pushes the "pillows" against the nares of the nase). For many people, a nasal pillows mask causes fewer leaks. Personally, I use the Swift II. You do need to get mask leaks under reasonable control in order for CPAP therapy to work properly. It can be a bit of an art getting a mask to seal properly. But, as others have said, the machine will compensate for small leaks. You can see the available masks at Cpap.com and also user's ratings of them.

What kind of CPAP machine and mask do you have? There are probably people here who have your equipment, who can give you specific advice on your issues.

[Uncle_Bob]

I'm wondering if I can either be reassured that SOME leakage is normal, and therefore should not feel anxious about it and can rest easier

I'm not sure what machine you have but I have a resmed machine and the software.
See the detailed report from the software below.
Notice the leak graph and the red line at about 24l/Min and notice the graph showing some leakage below that red line over the course of the night.
Its my knowledge that the machine can compensate for the leaks below the red line.
Knowing that means i don't worry about the odd leak.

Also in reporting sumary data my machine reports leaks as the medium, 95% percentile and maximum.
I only ever really take notice of the 95% percentile.

If you are anxious why not look at some over the counter aids to help yu with your relaxation into sleep?

[Armando]

Thank you all for your replies and answers.
Having read them, I will definitelly be patient and give it more time. Also, I will try to be less aprehensive about leaks. The only way I have of meassure them is subjectivelly, however, as my device does not measure or stores data beyond usage time.

[robysue]

Thank you all for your replies and answers.
Having read them, I will definitelly be patient and give it more time. Also, I will try to be less aprehensive about leaks. The only way I have of meassure them is subjectivelly, however, as my device does not measure or stores data beyond usage time.

Armando,

In addition to the fact that the S8 Escape provides no useful data to you to help you figure out whether those leaks are a problem and no useful data to determine whether your apnea is under control beyond the subjective How do you feel? standard, it is also an older, obsolete model having been replaced by the S9 Escape more than a year ago. The S9 Escape is the bottom of the line model in the current S9 series of PAP machines made by Resmed.

I don't know where you are located in the world, so I don't know if this is relevant or not. But ...

If you are in the US, your insurance company paid the DME the exact same amount of money for that S8 Escape that they would have paid for an up-to-date S9 AutoSet, which records full efficacy data and can be run as either a CPAP or APAP. So the DME maximized their short term profits by selling you (and your insurance) an older, cheaper, no data machine, and this unfortunately also maximizes your chances of becoming an ex-CPAPer if you hit a major difficulty in making this crazy therapy work for you. The good news, such as it is, is that you are only 2 weeks into therapy. So if you want to try to get a better machine---in the sense of a newer model or a full data machine or both, NOW is the time to raise a stink about the machine your DME provided you. JanKnitz has some excellent advice for folks in your position in her post Help! I'm stuck with a brick. But time is of the essence and the longer you wait, the more likely it is you'll be stuck with that outmoded brick for five more years to come.

[Armando]

What you are telling me is a real bummer. I knew it was a very basic model, but obsolete to boot?
I'm south of the border, and we don't have much choice of models. This was the only model I was offered that doesn't have features I don't need like bilevel or autoset.
Besides I don't have health insurance as understood in the US, and what I do have, specifically doesn't cover sleep disorders. Long story short: I had to pay for the study and equipment myself and, frankly, the other models were out of my reach.
Pardon my newb-ness, what does DME stands for?

[robysue]

What you are telling me is a real bummer. I knew it was a very basic model, but obsolete to boot?
I'm south of the border, and we don't have much choice of models. This was the only model I was offered that doesn't have features I don't need like bilevel or autoset.
Besides I don't have health insurance as understood in the US, and what I do have, specifically doesn't cover sleep disorders. Long story short: I had to pay for the study and equipment myself and, frankly, the other models were out of my reach.
Pardon my newb-ness, what does DME stands for?

DME = Durable Medical Equipment provider---the people who sell you the equipment.

It's a real bummer that all of this is out of pocket for you.

[chunkyfrog]

I found that after several weeks, a nasal mask was useless; as my mouth pops open (it didn't at first)
I also found that my first full-face mask (ResMed Quattro) did NOT fit.
Local DME's are sometimes such turkeys!
Thank goodness for cpap.com!
I paid out of pocket for a better machine--for about half of the local cost of my first machine.

[jabman]

I'm south of the border, and we don't have much choice of models. This was the only model I was offered that doesn't have features I don't need like bilevel or autoset.

Can you exchange it for an autoset? they are good to have even if you use it in cpap mode (which is how I use mine) and I beleave they are data capable machines to boot.