Crisis

bpayh wrote: My machine is a REMstar pro. The mask is a comfortgel blue nasal mask. I think I'm unable to fiddle with the pressure settings, it's set by prescription via a memory card.

Please check to make sure you've selected the correct machine. The REMstar pro that is currently showing in your signature is very out of date: It's two full generations back in the Resprionics CPAP line---i.e. it's the pre-Series M machine, and the Series M was replaced by the System One sometime in 2010. So it seems very unlikely that you've been set up with this machine. If you have, then we do know that DMEs fool docs as well as the rest of us.

As to what I think the problem may be, it's hard to say. One particularly bad night I did feel like I was gasping for air, and I had a sensation of air hunger in my chest, and a mounting urge to rip the mask off of my face. I'm almost embarrassed to admit it, but I think there was an anxiety component. It's hard to be sure because it's thankfully quite a foreign sensation, but on the other hand, as one who interacts with patients every day, I can recognize the symptoms and put two and two together. I just always assumed that I wasn't "the type" to get a feeling of anxiety.

Welcome to your patients' world. And keeping your reactions in mind just may help you help your patients better.

Can't sleep in my normal position might be playing a factor. I haven't been able to sleep on my back for a long time now. Over the years I've rotated over to my right side, and from there I've rotated further so that I sleep on my stomach with my head turned. It's hard to adopt this position with the mask and keep a good seal, although it can be done if I get my face hanging off the edge of the pillow just right... Yeah it doesn't really work out well.

There's a forum member here by the name of Roster who has posted several times about stomach sleeping position that he uses that he calls the Falcon position after a (former??) forum member named Falcon1 posted pictures of himself in tummy sleeping positions with a mask on. Pictures are included in this thread: viewtopic.php?f=1&t=36738&st=0&sk=t&sd=a&start=15

Do a fourm search on Roster and Falcon and you'll get some hits.

And finally, as M.D. Hosehead points out, my xPAP adjustment period and my battle with insomnia are not typical of most new hoseheads. We all have our own cross to bear and this is mine. Sometimes I think that my long drawn out battle's "purpose" is to make sure someone here has the experience in order to play it forward and help others avoid the battles I've had to fight.

Best of luck!

Greetings bpayh !! A few comments:

Hopefully you will find some helpful suggestions here. As you must understand, an involved patient is the best, since this can lead to the best control of a situation. So, we certainly encourage involvement. We know from experience it makes a tremendous difference.

Robysue, your post was nothing less than exceptional. Thank you for the time and effort you show as you help others. It enriches all of us. You should post that as a separate post to the forum. Also, if you have time, adding it to the CPAPtalk Wiki would be a great asset to the forum.

byayh, you will find that you can change the settings on your own machine. You can also capture diagnostic information (obstructive and clear airway apneas, hypopneas, periodic breathing, etc.). You can also using the providers menu change the settings. I normally do not recommend that for anyone new to the therapy. You will find that I always recommend this be done in conjunction with the prescribing doctor. Some doctors are worried (and rightfully) about potential problems with this. But I find that carefully controlled and measured change can be done, while keeping the prescribing doctor in the loop.

Because you are new to this, it would be best to review the situation with your doctor.

bpayh wrote:Can't sleep in my normal position might be playing a factor. I haven't been able to sleep on my back for a long time now. Over the years I've rotated over to my right side, and from there I've rotated further so that I sleep on my stomach with my head turned. It's hard to adopt this position with the mask and keep a good seal, although it can be done if I get my face hanging off the edge of the pillow just right... Yeah it doesn't really work out well.

If you favor back-sleeping, might I suggest that you allow yourself to sleep on your back if this allows you to fall asleep, at least until you acclimate to CPAP treatment. Then, when you wake and are still drowsy, roll over to your side. My AHI is only slightly higher when I sleep on my back. As you know, if your titration is correct, your airway should be adequately cleared with CPAP to allow for back sleeping. It isn't ideal and there are some here who are adamant about sleeping on their side, but I will sleep in whatever position I can find comfortable at the time. Initially, I would do whatever you need to do to adjust. Now, I find that I sleep on my side most of the time. If your current mask doesn't allow for side-sleeping comfortably, you might try the Swift FX nasal pillows. Others here have said it allows for stomach sleeping, as well. It is now my favorite mask.

What kind of bed pillow are you using? That may be another consideration.

To bpayh:
I am tempted to envy your future patients.
Had I had professionals who had 'been there-done that',
my path would have been even easier.
The people on this forum have been a godsend; but sadly, too many do not find this forum until after years of suffering.

bpayh, welcome to the forum.

As others have mentioned, you can change the pressure on your machine...if you want to, and if you know how to go into the therapy setup menu on the machine. No software needed to do that.

Once you let us know for sure what the full name of your machine is, several here will be glad to send you the Provider manual (clinical manual) for that particular machine. That manual has all the instructions for accessing the therapy setup menu and what the menu items mean...and how to change them.

Full name of Respironics machines are usually written on the top of the machine.

It will be a name like this for an older machine that has the word "Pro" in its name:
Respironics REMstar Pro CPAP (the older one often has a blue sticker on it that says "C-Flex Feel the difference"

or a somewhat old but more recent model:
Respironics REMstar Pro M series (has C-Flex, but doesn't say that in the name written on the machine.)

or the newest one (after Philips bought Respironics:)
Philips Respironics REMstar Pro C-Flex+

Even if you use a machine that does not record and show AHI and Leak data (better if it does show those things) you can still get just as good treatment. You just have to be more of a detective to figure out how to tweak your therapy pressure if the machine doesn't provide that info.

If you find you have a machine that records only "hours of use" you might decide you want a different machine. This list at the link below can help you sort through the sometimes similar names:

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated February 2011.
You'll want a machine that can record leak and AHI info. The ones in blue do that; the ones in red do not:
viewtopic.php?p=307168#p307168

bpayh,

You'll appreciate what's in these two links, I think...

Link to a study that concluded, "yes."
"Can Patients with Obstructive Sleep Apnea Titrate Their Own Continuous Positive Airway Pressure?"
http://www.tnlc.com/Lara/laura/osa/CanP ... wnCPAP.pdf

Link to a Powerpoint presentation by board certified pulmonolgist/sleep doctor (Dr. Barbara Phillips) at a meeting of the American Lung Association of the Central Coast - November 2004:
"Not Every Patient Needs to Go to the Sleep Lab"
http://www.tnlc.com/Lara/laura/osa/Barb ... t_0830.pdf

chunkyfrog wrote:To bpayh:
I am tempted to envy your future patients.
Had I had professionals who had 'been there-done that',
my path would have been even easier.
The people on this forum have been a godsend; but sadly, too many do not find this forum until after years of suffering.

I totally agree! I had been on c-pap over 15 months with no luck at all using it,then had surgery,(UPPP), then had to go back on c-pap. I finally found this forum and got help from these wonderful people.
I suffered much too long,it would be wonderful if our dr's were more educated.
I asked my sleep dr. if he had ever slept with a c-pap machine.
he said no,I said you should!

hi there
sorry you are having such a rough time of it..

one heck of a post there robysue!

I agree that you may have a pressure issue here, maybe its not high enough..

I have heard many people describing anxiety issues with too low of a pressure..

When I started, it was just too high for me, I was hyper sensitive, and like robysue, a freaking insomniac...
however that was due to having untreated apnea for so long, and my body being afraid to go to sleep because
it knew the horror that was ahead.. I traded one difficulty for another.. A contraption on my face which would not
allow me to rest or sleep properly..
I gave it a good go for nine months.

As far as the positions, I found that taking my hand and pressing down and area with my palm or my fist
to make "dead air space" for the mask really helped me to be able to sleep on my side. It takes practice, but
you will learn over time how to get comfy with it.. but most of all get that software, and run your own tests to
see where your pressure needs to be.. and get the best data capable auto machine out there.. youll be glad you did.
Dont forget the strap softies, or padacheeks for your mask straps!
good luck!
elena

Welcome to our group!!! I think maybe you need to try the Swift FX mask. It has nasal pillows, and comes with XS, S and M pillows....if you ask for one of these to try, watch to make sure the DME gives you all three sizes....they often hold onto the sizes they think you won't need. These pillows eventually wear out and need to be replaced about every 2 months for some people. We trade these extra pillows here on the forum for the size we need, so we don't have to pay for new pillows when we need them. The DME sometimes charges a lot of money for these extra pillows that come with every mask, and they are not supposed to take the other pillows away from the consumer, since they are part of the mask, just like the headgear. If you like to sleep on your side, I think this is the mask for you. I am a side-sleeper and took to the Swift FX very quickly. There is very little strap touching the face and upper lip. I was prescribed CPAP about 10 years ago but I could not tolerate it, and I turned to surgery (UPPP, T&A, and FESS) that only helped for a little while, so here I am, back again, but this time I was surprised to find that I was able to sleep with the Swift FX.
I also think your pressure is too low, and if your ramp is turned on, that could be the problem. I think you need some sort of auto CPAP that is data capable so you can tweak the pressure with help from your Dr. I am not sure your DME gave you a top of the line machine, and they should have. I would call them and ask for another machine. Good luck!
Come here with any questions and we will try to help you!

If it says "Philips Respironics" anywhere, it's a Philips Respironics Series One REMstar machine.
If it says "M Series" anywhere, probably near the display, it's a Respironics Remstar M series machine.
If it says neither, it's what we call a "legacy" REMstar machine.

The one you show in your profile is the "legacy" model. Many of us think many DMEs are below used car salesmen on the morality scale, but have a hard time believing they sold you a machine that old and outdated.

Here's some hints for dealing with the psychological aspects of feeling suffocated. While doing CPAP:

1) Open your mouth, let the air flow through for a few seconds. Continue to breathe in and out. This is the mouth breathing you want to avoid, but it should show you whether you're getting enough air. Purse your lips and feel the airflow with your hand. Remember what it feels like.

2) Close your mouth and put your hand in the airstream flowing out from from the vent holes your mask. Remember what that feels like. Breathe in and out while feeling the airstream.

3) Reach under your mask with a finger and pull it away from your face a little. Feel the air gushing out as you breathe. Remember how that feels.

If you get a suffocating feeling in the night, try these things and see if you're getting air and you can convince your hindbrain you're getting air. Air gushing out in these cases shows you're getting air into the mask.

Also, look at the display on your machine and see what pressure it's indicating.

Open your mouth and breath in and out through your mouth if necessary. You'll probably find that you actually can't breathe in through your mouth because too much air is coming in through your nose. Lift the mask off your face and breathe "around" it without undoing the straps to get over the panic.

Another possibility is that you're getting apneas like did before CPAP, but your hindbrain panics and blames the thing clapped over your nose for the suffocation.

When you first start using the CPAP, you really feel the pressure. Your body quickly adjusts and you may no longer feel the pressure, even if it's still the same. This may make you feel the pressure has gone down and give the the "not enough air" feeling.

Re: changing the pressure

You can probably change the pressure despite the prescription on the card once you know the magic button sequence. It's possible (I think) but unlikely that the card may be set to "lock down" the pressure setting. That takes extra work on the part of the DME. Even if it is "locked down," I think you can remove the card and change the pressure, but then you won't get any data collected, which could affect "compliance" for insurance purposes, and makes it harder for you to determine how well the treatment is working and readjust your pressure.

Re: Insurance compliance

If you don't get 4 hours sleep recorded on your CPAP machine for a certain number of nights, you may find your insurance will refuse to pay.

Re: CPAP practice

You might try wearing the machine doing CPAP while reading, watching TV, etc. It can help you get acclimatized. And it can help you meet your 4 hour requirement.

6 is quite low. The first thing I would try is raising the starting pressure to 8, with no ramp. This is unlikely to cause any problems, unless you had a lot of central apneas during your sleep study and titration. Your sleep study report will clarify whether that is an issue for you.

Correction, it's 4 hours "usage" in most cases, not 4 hours sleep. Most machines can't tell if you're sleeping or awake as long as the machine is on and you're wearing the mask.

archangle wrote: Re: Insurance compliance

If you don't get 4 hours sleep recorded on your CPAP machine for a certain number of nights, you may find your insurance will refuse to pay.

It is very common to have difficulty adjusting to this therapy, and people often feel more tired when they first start using it. You have to get past the point that your body is objecting before the therapy can help you. That takes 2 or 3 weeks, at least, of wearing it all night long.

You may have become locked into a bad emotional pattern concerning sleeping with the machine. I suggest that on some day when you have unstructured time, get in bed for a nap, and use the machine for the entire time. That way, there is no pressure to fall asleep. You might find that it is easier to go to sleep when you are not under pressure. And you need to have a positive experience with the machine.

If you are using the ramp, as others have said, turn it off. Your report of feeling air hunger is concerning. If that occurs again at 6 cm (assuming no ramp), then I would suggest changing the pressure to 7 cm and try again. The higher the pressure goes, the more you will struggle with leaks. That alone can keep you awake. It is a blessing that your Rx pressure is only 6 cm.