CPAPtalk.com

No one called me back. I only lasted 1.5 hours last night. I was able to see the blasting pressure that woke me up was a mere Category 8.5 hurricane.

I've come to the conclusion the concept of this therapy is barbaric and ludicrous. Healthcare professionals of the future will look back and say, "They did WHAT?"

Major, major kudos to all of you who persist. In the next life you will be gods and goddesses of the air.

They will look back and say, what an ingenious and minimally invasive way to save and improve lives. Look how happy those vital organs were not to be starved of oxygen. How great that all it took, for some, was to persevere.

Begone heart attacks and strokes!
Begone pulmonary hypertension and organ damage! ( just to name a few)
Begone falling asleep at the wheel!

We are here to help but if you already made up your mind that it won’t work then as i said-either way you are right.

One of our posters had over 110 AHI. I bet she was at 8 at one point too.

Let us help and don’t give up after 2 days.

KittyMom22 wrote: ↑

Fri Oct 21, 2022 5:13 am

No one called me back. I only lasted 1.5 hours last night. I was able to see the blasting pressure that woke me up was a mere Category 8.5 hurricane.

Some thoughts that immediately come to mind:

1) Any chance you had even a small leak? The machine blows more air in the presence of a leak in order to maintain pressure.

2) Was it the pressure in the mask that woke you up? Or was it the air intentionally blowing out of the exhaust vents? Some masks have particularly strong exhaust flows; others have ways of diffusing the exhaust flow so that it does not feel like a hurricane if it happens to blow on your arms.

3) As hard as it is to believe, you do eventually get used to the air blowing through the mask.

I've come to the conclusion the concept of this therapy is barbaric and ludicrous. Healthcare professionals of the future will look back and say, "They did WHAT?"

Been there, done that too.

Yes, they may look back and wonder why. But they'll also look back at many of our much more invasive medical treatments for various conditions and wonder why as well. And at least xPAP works and is minimally invasive---i.e. it does not require surgery or drugs that have significant and negative side effects.

Major, major kudos to all of you who persist. In the next life you will be gods and goddesses of the air.

It's a shame that you're already giving up on only day 2.

I think I had the idea that this would be like getting a mild flow of oxygen. It's not at all what I expected. I'm really angry at the complete lack of patient education. I am guessing the sleep doctor thought the pulm explained it, and vice versa.

My pulmonologist didn't recommend this for me. I was foolish enough to ask for it after a really bad asthma summer. Now that the weather is cooler and less humid, I have been breathing and sleeping much better but felt like I had to go through with CPAP because it was already ordered for me. I'm going back to my other treatment because I really don't think I need this. If I really needed it, yes, then I would be more motivated.

I don't know if it was leaking or not. Sometimes I wake up and it seems to be, but then I check it and the mask feels tight. But I also can't be waking up every time I move because the mask is a little off.

I do think the person who said this particular mask is loud was right, because the air tubes wrapping around the head next to the ears.

KittyMom22 wrote: ↑

Fri Oct 21, 2022 7:30 am

I'm going back to my other treatment because I really don't think I need this. If I really needed it, yes, then I would be more motivated.

Wanna sell your machine?

KittyMom22 wrote: ↑

Fri Oct 21, 2022 7:40 am

I don't know if it was leaking or not. Sometimes I wake up and it seems to be, but then I check it and the mask feels tight. But I also can't be waking up every time I move because the mask is a little off.

I do think the person who said this particular mask is loud was right, because the air tubes wrapping around the head next to the ears.

The question for the DME might be what is their mask return/exchange program.

But before you even get that far, consider that we are asking questions about your settings, suggesting watching videos to see how to properly attach the mask to your face, there are different ways to determine if you are getting air leaking thru the mask thru the nasal or oral portions, and so so many things you haven't yet tried.

If you are expecting the DME and pulm to help you, you will be perpetually saddened. However, the wealth of information HERE goes far beyond any one practitioner IMO. These are real people who have tried various solutions (some work for some, some dont, some work for others).

Everyone here is willing to help but I come back to what you were saying about being your own advocate, you have to start there. Some of us are sitting here saying to ourselves: all she has to do is test this out, or change that setting, or put the gobbledygoop on her nose and she would be doing much better/we can help her out from there. You haven't even scratched the surface yet on the info available in this forum.

Me, personally, this summer I had the AC cranking in the car. It was hitting my nose and felt so good, but with a bit of pressure. It reminded me of my CPAP.

I am also curious if the cats are still spooked when you wear the mask? It would be a good sign that they are getting used to it, at the very least.

KittyMom22 wrote: ↑

Fri Oct 21, 2022 7:30 am

I think I had the idea that this would be like getting a mild flow of oxygen. It's not at all what I expected.

Supplemental O2 works very differently than xPAP does.

With O2, there is no need to "seal" the upper airway because you are not trying to pressurize it. You're just increasing the O2 content in the air that the person will be inhaling.

The point of xPAP is to pressurize the upper airway to make it harder for the upper airway to collapse. That requires two things: (1) A mask that seals against the face, but has exhaust vents so you don't rebreathe your CO2, and (2) blowing enough air into the system to first pressurize it and then blowing enough air into the system to keep it pressurized.

In other words, to understand why there's so much more air being blown at your face with xPAP, it helps to understand what's going on. Think of your upper airway, your nose, your oral cavity, the hose and the blower unit as a leaky tire: To keep the tire at the desired pressure, it is necessary to keep blowing air into the tire at the same rate that air is being lost through the (intentional) leak---i.e. through the exhaust vents of your mask. And if new leaks develop or if an increase in pressure is needed, additional air has to be blowing into the system.

I'm really angry at the complete lack of patient education. I am guessing the sleep doctor thought the pulm explained it, and vice versa.

When I was a newbie around here back in 2010, we described doctors as treating new xPAPers like mushrooms: Doctors seem to prefer to keep sleep apnea patients in the dark. Newly diagnosed patients often find they have to fight to get an actual copy of the sleep study results. DMEs and docs routinely seem to think patients don't need access to the data recorded by their xPAP machines. Heck, many DMEs and docs are still happy to prescribe machines that record nothing but usage data. Docs seem to know little or nothing about how masks should fit. DMEs routinely tell patients they have to use a full face mask at the first hint the patient might mouth breath even a tiny bit of the time and then tell those same patients to over-tighten the masks.

In other words, you have a right to be angry at the complete lack of patient education. But anger, even well justified anger, doesn't actually help you figure out how to make xPAP work for you---unless you're like me and that anger comes with a certain stubbornness and refusal to just give up in the face of difficulties.

My pulmonologist didn't recommend this for me. I was foolish enough to ask for it after a really bad asthma summer. Now that the weather is cooler and less humid, I have been breathing and sleeping much better but felt like I had to go through with CPAP because it was already ordered for me. I'm going back to my other treatment because I really don't think I need this. If I really needed it, yes, then I would be more motivated.

While you want to believe that your asthma and your OSA are just flip sides of the same coin, they're not. They're two different health problems and they both need to be addressed for you to feel at your best.

But in the end, it is your life. You can choose to give up now, allow the untreated apnea to most likely get worse over a number of years, and find yourself right back at being prescribed a CPAP when you finally get tired of whatever OSA related symptoms you experience, which include more than just daytime sleepiness.

First of all, there is no "blasting air." There is if you take the mask off without first turning the machine off, of course. Otherwise, there is only slight pressure. Not blowing. Not blasting. Not air movement. None. Just pressure and a little venting to prevent CO2 building up in a closed system.

Second, as much as we appreciate the pressure in the mask, we are not here to pressure anyone into any health choice. Vaccines? Up to you. Mammogram? Again, up to you. Eating your veggies? Hey, it's your plate and your life. Same with CPAP. Adults have full rights of informed consent and bodily integrity before their docs and before board members here alike.

That said, I consider PAP therapy to be my secret weapon and superpower in the fight for good sleep, happy life, and healthy breathing. It took me many weeks to get it right, but I'm proud of the effort I put into it and the years of reward I continue to reap from it. I recommend it. But I believe in keeping all pressure sealed up in the mask.

So maybe give it a month or two then put it to a vote to the cats and kittens? Or not. Up to you. Either way, thanks for a good thread that may help any who wish to make a go of their therapy.

And thanks for putting up with the odd ones among us. We can't all be perfectly normal like Zonker.

KittyMom22 wrote: ↑

Fri Oct 21, 2022 7:40 am

I don't know if it was leaking or not. Sometimes I wake up and it seems to be, but then I check it and the mask feels tight. But I also can't be waking up every time I move because the mask is a little off.

Your body needs time to adjust to the new normal.

Once the whole set up is less strange, most of us learn to sleep through minor leaks. And most of us learn to reset the mask without the need to fully wake up: The usual fix for a small leak is to pull the mask gently away from the nose just a bit and then let go. The mask will resettle agains the face/nose with the air cushion fully inflated.

Also once the mask's headgear is fitted correctly and the air cushion is fully inflated, you should be able to move around in bed without triggering leaks because "the mask is a little off." The trick, however, is to fit the mask while lying down in your most common sleeping position and in making sure that the air cushion must be fully inflated before you start moving around in bed. And over tightening the headgear can actually prevent the mask's air cushion from fully inflating and that can cause even more problems with leaks. The average RT at the average DME doesn't seem to understand this at all, probably because most of them have never, ever tried to sleep with a mask on their face.

I do think the person who said this particular mask is loud was right, because the air tubes wrapping around the head next to the ears.

Sounds like your current mask is not a good match for you. You need to contact the DME and ask them for a different mask. DMEs routinely have policies that allow a new xPAPer to switch out masks that are not working (because of discomfort or any other reason) during the first several weeks of therapy. So contact your DME and tell them you need a different mask, and that you want to try one where the air is not routed through tubes that go around your head. If they ask why, be honest: Tell them the current mask is so noisy that you can't get to sleep very easily. And tell them the noise that's bothering you is the sound of your own breathing being amplified through the air tubes that lie on the side of your head.

Here are some full face masks with nasal cradles similar to the F30i you are currently using that do not have air tubes routing the air right by your ears:

• PR Amara View Full Face Mask
• F & P Evora Full Face Mask
• Resmed Mirage Liberty Full Face Mask with Nasal Pillows

In all of these masks, the air hose attaches at the front of the mask. That typically means the hose winds up draped across your chest, either inside or outside of your bed covers. Some people find that makes it a bit tricky to move around in bed. (I'm an active sleeper and this is not an issue for me.) If having the hose draped across your chest poses a problem, you can always hang the hose over head and that gives you the same kind of freedom to move around without getting tangled in the hose that your current mask's hose connection does.

If the idea of a forehead support built into the mask doesn't bother you, then you've got a bunch more full face mask models that don't have airtubes along the side of the head to choose from. While these masks have a larger footprint on the face and make you look more like a fighter pilot than the newer nasal cradle full face masks, you might find that they are more stable on your particular face when you're moving around in bed. (My husband uses a mask of this sort and he hardly ever has a problem with leaks, unless it's time to replace the mask cushion or the headgear because they're worn out.)

You might also want to try out a nasal mask or a nasal pillows mask and then see if mouth leaks are actually a significant problem. Many people find that if they are not too congested, they can actually use a nasal mask or a nasal pillows mask even though they were told that they probably needed a full face mask.

Robysue said: You might also want to try out a nasal mask or a nasal pillows mask and then see if mouth leaks are actually a significant problem. Many people find that if they are not too congested, they can actually use a nasal mask or a nasal pillows mask even though they were told that they probably needed a full face mask.

_________

I was asking about this also, whether or not a steamy hot shower helps clear out the congestion or what. It seems like a good chance she would do ok with just a nasal pillow or cushion and taping if her jaw sags open. So many things haven't been tried, including diagnosing whether the current mask is creating leaks thru the nose part or mouth part. I find it helpful to cover the short hose after I put the mask on (in this case the one overhead) and blowing out thru my nose (and in this case mouth also) and that creates the mask pressure you speak of that inflates the inflatable. From there you check for leaks and reposition and try again. Then try again when you lay down in case mask has shifted.

These are just little problems that you knock out one at a time.

They also make the same mask she uses now without the "i", which means the hose comes out the front and not over the top of the head.

lazarus wrote: ↑

Fri Oct 21, 2022 8:50 am

And thanks for putting up with the odd ones among us. We can't all be perfectly normal like Zonker.

who you callin' perfectly normal?
<squints suspiciously>

lazarus wrote: ↑

Fri Oct 21, 2022 8:50 am

And thanks for putting up with the odd ones among us. We can't all be perfectly normal like Zonker.

robysue1 wrote: ↑

Fri Oct 21, 2022 9:11 am

Your body needs time to adjust to the new normal.

zonker wrote: ↑

Fri Oct 21, 2022 11:18 am

lazarus wrote: ↑

Fri Oct 21, 2022 8:50 am

And thanks for putting up with the odd ones among us. We can't all be perfectly normal like Zonker.

who you callin' perfectly normal?
<squints suspiciously>

Not to worry, Zonker. There's a new normal for anyone who hangs around here long enough.

ozij wrote: ↑

Fri Oct 21, 2022 7:11 pm

Not to worry, Zonker. There's a new normal for anyone who hangs around here long enough.

thank you for standing up for me against that evil bully, lazarus.

honestly, i don't know how he gets a way with it.

Hey!
Lazarus is my friend from many years back. No name calling!