Daytime breathing difficulties

[retired_guy]

The important stats are the median pressure and the median leak. That tells me that his apnea is controlled at a pressure of 12 or less most of the time. The 95th and especially the max tells me that something occurred that caused the machine to increase the pressure substantially. That something was probably massive air leaks, as the 95th and max are quite high.

So, since your doctor doesn't know jack you're kind of on your own to figure out what to do. ..........and believe it or not, that's good news.

Based on all the above what I would do is set the machine to apap instead of cpap, and set the minimum pressure to 9 and the maximum pressure to 12. Then run for a week monitoring the results each day to see how that's working.

I do think a mask change might be in order. If he is pressing the mask against his skin trying to get it to work right, that's a really losing battle scenario. I think too often we are started with or prescribed a full face mask because we don't think a nasal or pillows mask can work us. "Gosh, I'm a mouth breather.." is a phrase that is heard so much you'd think no one was born with a nose in the first place. I can make all these comments because I was a number one advocate for the idea that I could not use anything short of a full face mask. But I was quite wrong. A pillows mask can very definitely be used with far better success than a full face mask. Sometimes you have to use a chinstrap with it, such as in my case, but non the less it can be a much easier system to adjust to than the nasal or the full mask. I highly recommend the Resmed P10, but there are others that are well reviewed too.

Finally, the therapy is not going to work if the mask is not on at night. You/he must embrace this new life style for it to be successful. I understand your husband felt sore and is "slowly getting better." But I suspect the soreness was because of an inability to fully exhale against the high pressures he was experiencing while desperately and unsuccessfully trying to keep his mask from leaking. That's done now, and since you are turning the epr onto 3, if you do set a max limit, the exhale should occur against much lower pressures which should provide him with much more comfort.

[Sleepster]

Dr. wouldn't listen to talk about what machine was doing. He is a doctor and knows nothing about how the machines work (his words). He did say lungs were very elastic and that his lungs got overpressurized (blown up like a balloon) and they needed time to deflate.

I think you need a different doctor. There are doctors who specialize in CPAP therapy. For example, the Kelsey-Seybold clinic has pulmonologists who are certified in sleep medicine.

You mentioned in your first post that you tried turning the machine off and then back on but it didn't lower the pressure. There's a ramp button specifically designed for that purpose. It lowers the pressure and then gradually "ramps" it back up.

He is going to set max pressure at 12 and I've asked that he up the EPR to 3 from the current 2 and we are going to try again after his lungs feel better with a different mask.

The EPR is a comfort feature and is of less importance. Setting the pressure at 12 will stop it from going any higher and that will likely make a huge difference for him.

apnea index 5.6. hypopnea index 0.9. obstructive 3.2, AHI 6.5. unknown 1.9. I have no idea what all this means.

Those numbers are the average number of events per hour. Note that 5.6 + 0.9 = 6.5. That's 5.6 apneas per hour plus 0.9 hypopneas per hour for a total AHI of 6.5 events per hour. These are excellent numbers for a beginner. Tell your husband that I said that this is evidence that the machine is working for him.

Can an ill-fitting mask cause the machine to over pressurize him?

Probably. It's routine for newbies to have try a few different masks. Call your equipment provider because it's a call they should be expecting.

We don't understand how a leak would cause it to over pressurize, I would think if the air was free flowing then it would lower the pressure since there is no resistance.

It doesn't work that way. The machine measures the air flow, in and out, in and out, as we breathe. You can see a graph of this on your computer. Every breath in looks like a peak, every breath out a valley. It then does an analysis of this flow pattern, looking at the heights of the peaks and depths of the valleys. It even looks at their shapes. It then makes adjustments accordingly. For some people it "runs away" and sets the pressure too high. This may be happening here, and lowering the max pressure to 12 may be the fix. It's certainly the recommended remedy for this problem.

The RT that sets up the machines only does it as his 2nd job and he just picks a mask and fits the size and you're done. We are working with the DME and they are the ones that sent the 2nd mask ... they are much more helpful that the one that fitted him.

You are doing the right thing. You have to be persistent. I don't mean to freak you or your husband out, but you need to know that lots of people give up and put their machine in a closet. This affliction, if not treated, causes us to lead miserable sleep-deprived lives and die early of a heart attack or stroke.

Your husband will soon be feeling much much better. The rewards are worth the effort. It will improve the quality of your life, too.

[MastiffMom]

Thanks Retiredguy! We both desparately want this to work. His apnea is so bad that he is totally exhausted during the day to the point he has trouble staying awake at work so to say he is motivated is an understatement. The machine is to be set up as an APAP with the low at 5 and the max at 12. The EPR is currently at 2 and I'm hoping the dr. orders it changed to 3 like I asked. He does need the full face mask. His sinuses are narrow enough that using the nasal pillow even at 5 the pressure was very very uncomfortable. He is actually adjusting well to the full face mask. As far as his lungs, it was actual pain and shortness of breath and hyperventilating. Dr. said his lungs got over inflated. As each day passes without using the machine as it is currently set up (min 5 and max 20) his lungs are relaxing and he breathing is getting back to normal. The dr. wants him to wait until his lungs are better before trying the machine again. That is okay because we have to get the orders to the DME and a chip from them for the machine so by the time it all gets sorted out I hope he will be ready to try again. When the mask and machine were working right he did very well and I would hear a gentle increase in pressure. We just don't understand what is happening to cause the pressure to stay so high when he is awake and trying to reset the mask. Is the mask slipping on his face to cause the pressures to go so high or is the machine malfunctioning somehow? If it is the mask causing the problems, why doesn't the machine want to reset when he removes the hose, resets the mask, and reattaches the hose or turns the macine off and back on? Sometimes it resets perfectly and other times it doesn't. Gotta love machines LOL. Again thanks for the reply!

[MastiffMom]

[quote='Sleepster' pid='72810' dateline='1403118560']
[quote]I think you need a different doctor. There are doctors who specialize in CPAP therapy. For example, the Kelsey-Seybold clinic has pulmonologists who are certified in sleep medicine.[/quote]

Agreed. I'd like to not start over though until we get the APAP working. He has suffered for a very long time and help is so close at hand. Once we get the APAP working I'm definitely going to start looking elsewhere.

[quote]You mentioned in your first post that you tried turning the machine off and then back on but it didn't lower the pressure. There's a ramp button specifically designed for that purpose. It lowers the pressure and then gradually "ramps" it back up.[/quote]

Ramp is set off. Min. pressure is 5. Sometimes the pressure goes back to baseline 5 and sometimes it doesn't lower at all from whatever it is blowing at. That begs the question, presuming the pressure is high ... say 19 ... because of an apnea state, then mask leaks, when he removes mask and hose then puts mask on then attaches hose, is it supposed to go back to min 5 because he is awake and breathing normally? It does sometimes but sometimes it continues blowing at 19.

[quote]apnea index 5.6. hypopnea index 0.9. obstructive 3.2, AHI 6.5. unknown 1.9. I have no idea what all this means.

Those numbers are the average number of events per hour. Note that 5.6 + 0.9 = 6.5. That's 5.6 apneas per hour plus 0.9 hypopneas per hour for a total AHI of 6.5 events per hour. These are excellent numbers for a beginner. Tell your husband that I said that this is evidence that the machine is working for him..[/quote]

THANKS!!!! I will definitely tell him that. Like he told the dr., it works just enought to tease him.


[quote]We don't understand how a leak would cause it to over pressurize, I would think if the air was free flowing then it would lower the pressure since there is no resistance.

It doesn't work that way. The machine measures the air flow, in and out, in and out, as we breathe. You can see a graph of this on your computer. Every breath in looks like a peak, every breath out a valley. It then does an analysis of this flow pattern, looking at the heights of the peaks and depths of the valleys. It even looks at their shapes. It then makes adjustments accordingly. For some people it "runs away" and sets the pressure too high. This may be happening here, and lowering the max pressure to 12 may be the fix. It's certainly the recommended remedy for this problem.[/quote]


Thank you, thank you, thank you! I will tell him.

[quote] I don't mean to freak you or your husband out, but you need to know that lots of people give up and put their machine in a closet. This affliction, if not treated, causes us to lead miserable sleep-deprived lives and die early of a heart attack or stroke.[/quote]

Yes, we know. He is miserable beyond belief. Like I told this dr. yesterday we HAVE to make this work. We can see why people give up though if they don't have medical professionals that will listen to them! I've found more help and reassurance through this board than anywhere else. Yes, we know it is not easy to get used to and that there is an adjustment period ... but in his case, somehow something went wrong ... it was just not him being difficult or whining ... and they don't want to listen.

[retired_guy]

The machine is to be set up as an APAP with the low at 5 and the max at 12.

That's good, although with an EPR of 3 I suspect your DME will want the min to be at least 8. If the machine is running at 8, then the EPR would be 5. I'm not sure what the machine wants to do if a min is at 5 and needs to drop to 2 to accommodate an epr of 3.

The EPR is currently at 2 and I'm hoping the dr. orders it changed to 3 like I asked. He does need the full face mask.

That being the case, then you need to get some liners to help with the leaks. Remzzzz liners are good, and I have used one called "Pad-a-cheek" which worked well also. Or, you can make one yourself from one of his cotton t-shirts. Take the fabric from the back side and he won't notice it as much when he wears the shirt.

As far as his lungs, it was actual pain and shortness of breath and hyperventilating. Dr. said his lungs got over inflated. As each day passes without using the machine as it is currently set up (min 5 and max 20) his lungs are relaxing and he breathing is getting back to normal. The dr. wants him to wait until his lungs are better before trying the machine again.

I have a problem with this. Yes, he hyperventilated. But the pressures with cpap machines are not so high that they can of themselves cause a problem with the lungs. On the contrary, for some of us it can be a help to the lungs. It's fine I suppose, but I just don't like backing off of the therapy because of this.

That is okay because we have to get the orders to the DME and a chip from them for the machine

Nope. No such thing as a chip for the machine. Settings are made directly to the machine, or to the sdcard. You and your husband will do this yourself in the future, but for now it's fine to let the DME do their thing.

so by the time it all gets sorted out I hope he will be ready to try again. When the mask and machine were working right he did very well and I would hear a gentle increase in pressure. We just don't understand what is happening to cause the pressure to stay so high when he is awake and trying to reset the mask. Is the mask slipping on his face to cause the pressures to go so high or is the machine malfunctioning somehow? If it is the mask causing the problems, why doesn't the machine want to reset when he removes the hose, resets the mask, and reattaches the hose or turns the macine off and back on? Sometimes it resets perfectly and other times it doesn't. Gotta love machines LOL. Again thanks for the reply!

His problems were largely caused by the mask and added to because this is so new to him. Once you get the leaks under control I suspect he will do great with the therapy.

He's a lucky guy to have you in his corner helping him work through this process. Good job to you both.

[Sleepster]

MastiffMom, it is very easy for you to set the pressure at the 5-12 range, the EPR to 3, and adjust the ramp settings. Just get the manual from here: http://www.apneaboard.com/forums/Forum-P...-and-Links.

The pressure setting of 5-12 has been prescribed by your doctor so feel free to set the machine there yourself. You're just following his directions. The EPR and ramp settings are considered "comfort settings" and therefore doctors allow their patients to alter these settings themselves anyway. No need to wait for someone else to do these things for you.

You said something about a chip? There's a SD card in your machine. You take it out, insert it in your computer, and then use either ResScan or SleepyHead (see above link) to review the data. This is of secondary importance. Setting the pressure is of primary importance and I feel that it will allow your husband to tolerate the machine much better.

[MastiffMom]

He's had the machine less than 2 weeks and is on a 90 trial with the insurance company for compliance before they will pay anything. I don't want to mess that up so I'm playing by the rules. Once the machine is paid for, then I have no problem tweaking it. Again, thanks to this board I have the manual.

[Sleepster]

He's had the machine less than 2 weeks and is on a 90 trial with the insurance company for compliance before they will pay anything. I don't want to mess that up so I'm playing by the rules. Once the machine is paid for, then I have no problem tweaking it. Again, thanks to this board I have the manual.

All the insurance company is going to look at is how much he's used the machine. Usually they want 4 hours per night of compliance for 70% of the nights.

[Shastzi]

What Sleepster said.
Keep in mind that the machine does not have the power to hurt you.
(Unless you have known contraindications that your Doc would have already eliminated by now!)
It CAN make you uncomfortable for a while until you acclimate to using it.
I suspect that is why the soreness. I felt that too at first.
Once you acclimate to the therapy THEN with a little tweeking you can start seeing some real benifits.
You can only get acclimated by using it, of course. As much as possible.
Try using it during the day, while watching TV, or reading.

Hang in there a keep in touch!

[archangle]

Chest pain can always be heart problems or other serious problems, so stay in touch with the doctor.

New CPAP patients often end up with sore "breathing" muscles in the chest from having to exhale against the machine. It tends to go away after a while if that's the problem, as your muscles adjust.

Using the machine during the day while reading or watching TV helps many people adjust to the machine. It also counts as "compliance" in terms of getting your 4 hours a day.

Be careful on using the machine. The insurance companies usually require you to use the machine 4 hours a night for 70% of the time in order to be "compliant" and get the machine paid for.

If you can't get over the problems, you might want to ask your doctor to lower the maximum pressure for a while until he adapts to it.

If the pressure is bothering him, turn it off for a few seconds and then turn it back on. This should drop the pressure for a while until it adjusts back up.