New here.....lots of issues!!

[MSBryant]

I am a newly diagnosed "sleep apnea" patient. My AHI is 102.0 - have no idea what that means.

Received my cpap machine the morning after my sleep study. Medical equipment girl simply gave it to me, said it was set to 14 with ramp function. Never fitted the mask to my head, nor bothered to see if it was something that I thought would work.

After 2 nights on this particular mask, I had a sore come up on the bridge of my nose. Called ME girl and she changed my mask to the one I am using now. While this mask doesn't dig into my nose like the first one didn't, it still rubs it can as a result I have a sore on the bridge of my nose that can not heal now for 2 weeks. The mask also "leaks" around my mouth when I go to sleep, thus waking me up to readjust.

Called today to express my frustration with having to "fight" with the mask EVERY night since I got home. I am averaging 3-4 hours of sleep at night (at least before the diagnosis I slept 7-8 though not a restful sleep), so you can imagine I am tired, now a sinus infection and a mask that I can not get through the girls head does not work for me.

I do sleep with my mouth open when I can't breathe through my nose and I have noticed the last couple of nights that it seems I can't get a good breath out when breathing through my mouth. It almost feels like trying to breathe out through a coffee stirrer. (Does that make sense?)

I can here to this sight (cpap.com) looking for a different mask that might work better for my face. I think that the hybrid (nasal pillows and mouth thingy) would work better for me.

Any suggestions? I am exhausted and ready to just give up and chunk the thing out the window.

Thanks!

[DEXSUZ]

MSB:

I began CPAP one year ago and had many of the problems you've mentioned but have found nocturnal bliss as I adapted to the CPAP gear and the way it works.

This is a the four-step program I devised. I had a tremendous sleep study at the local krankenhaus but ran into a granite roadblock as I attempted to get accustomed to masks on my own. You might want to give this a try:

My main advice is to back away from immediately trying to do all-nighters with your CPAP equipment. Use my four-step weekly plan WHICH WORKED WONDERFULLY for me:

1) During the first week sit, watch TV, or read with your equipment whirring away next to you. Get accustomed to the sounds, feelings of the moving air, and all the external trappings of the great chance at quality sleep you are nearing. Do NOT go to bed with the equipment.

2) Take the phone off the hook, draw the shades, evict everyone from the house, don't think about any nearby clock, and loosen your clothing as you lie on your bed in mid-afternoon. Turn on the CPAP gizmo, put the mask on your face, and close your eyes. Think peaceful thoughts, whatever they are to you. At some point in the week you WILL fall asleep. After you have this nap, you'll be amazed at what a refreshing experience it was.

3) During the third week have all your CPAP gear ready for action as you go to bed for the night. As you've done so many times throughout the years, you'll awaken far before morning. When you do, slap the mask on your face and turn on the CPAP gear before your groggy brain has any idea what's going on.

4) After successfully completing the first three steps at your pace, decide on a night (mine was March 3rd) when you have full confidence and will retire for the night WITH your mask on. You'll succeed!

My biggest mistake was expecting everything to go perfectly from the first night. One must be patient and keep anxiety as far away as possible. Come March 3rd, I plan on some sort of goofy celebration to mark one year of refreshing sleep I never had - over four decades - before last year.

Best of luck and God bless.

[DEXSUZ]

The Quattro FX - with a chin strap self-added to stabilize the mask as one moves in his sleep - is the best of the MANY I tried throughout the year.

The FX will not hurt your nose at all. The worst at making my nose sore was the Quattro Air. It rode the nasal bones at the lower extremes/sides of my beak and really, REALLY hurt.

Ask your DME about the FX but also get a chin strap to keep the mask in place. Quattro does NOT include a chin strap.

Good luck and God bless.

[BlackSpinner]

AHI the average number of times you stop breathing per hour - 102 times in your case. Which means that 102 times per hour "someone" chokes you or attempts to choke you for at least 10 seconds. Try it some time while a wake and you will realize just how severe this is.

There are liners available which will help with the sore nose issue. If totally desperate, cut up a tissue paper or paper towel to line the mask.

Try wearing the mask at full pressure while watching some interesting show on TV to get you and your body/mind used to it.

[MSBryant]

Hi Dexsus! I don't have a problem "wearing" the mask, except the fact that it rubs the bridge of my nose and won't allow the sore I already had from the first mask to heal. The main problems I'm having is the air leaks, the rubbing and not being able to exhale through the mask fully.

I'm claustrophobic but the mask doesn't seem to be an issue as far as that is concerned. It's just that I can't seem to express in the "right words" how it just doesn't seem to be doing what I thought I was supposed be doing.....keeping my throat open and allowing me to get a restful deep sleep.

I'm extremely frustrated to the point of tears - most assuredly due to lack of sleep. I too am well into my 4th decade (almost 5th) and feel I'm to old to be so frustrated at this and to young to know I will be fighting every night for the rest of my life just to get a decent nights sleep.

It's exhausted just thinking of it!

[Sheriff Buford]

Dexsuz: please don't offer that advise to a newbie...are you kidding me?

MS: educate yourself here. Look up at the top tabs for topics for newbies. Work each issue one at a time. If you want to try a Hybrid mask the Mirage Liberty hybrid mask is probably the most popular. You need to find a mask that is the most comfortable, but doesn't leak. Ask the place you get your mask if you can return it within 30 days for an exchange. If you like the full face mask, as Blackspinner recogmended, mask liners (IE: padacheek.com) are very comfortable. Hopefully you have a data-capable machine that will tell you how you are dong. Again, live on this site, educate yourself and don't give up. We are here to help you!

Sheriff

[Sheriff Buford]

it rubs the bridge of my nose and won't allow the sore I already had from the first mask to heal.

You're doing good! The mask liners (cut up an old t-shirt until you can get one) will help. And the DME (the place you bought your equipment) has some silicone nose pads, that will prevent the nose bridge sores.
I'm claustrophobic but the mask doesn't seem to be an issue as far as that is concerned. It's just that I can't seem to express in the "right words" how it just doesn't seem to be doing what I thought I was supposed be doing.....

Open your manual... your machine should have a feature that will drop the pressure in the mask when you exhale (some Philips-folks can tell you what the feature is called). This may help in the claustrophobic feeling.

I will be fighting every night for the rest of my life just to get a decent nights sleep.

You have a GREAT attitude... keep it up!! Keep going! Work every issue... you'll get the hang of it soon.
Sheriff

[Pugsy]

Welcome to the forum.
Your machine choice in your equipment isn't showing up for some reason.
Either maybe you chose a discontinued model or was supplied a discontinued model.
Can you please verify exactly what model machine you are using?
On the bottom of the blower unit (for Respironics machines which I assume you have since you chose a Respironics humidifier) is a 3 digit number...usually preceded by DS or REF and might have a letter or 2 after the 3 digits.
Tell us the 3 digit model number and we will know exactly which machine you are using...if it is one of the discontinued machines then we can tell you what to add to your comments line so we know what you are using.

Which model makes a difference both in what we might offer you as advice and things to try as well as whether or not you can use software to even evaluate your therapy.

You mention a sinus infection...is it typical cold/sinus symptoms with drainage that has color to it or is it just nasal congestion, maybe some clear drainage, sneezes, etc?
What setting are you using on the humidifier?

Are you experiencing problems getting enough air when using the ramp function or at other times during the night when ramp isn't being used?

[MSBryant]

Thanks Sheriff!

Pugsy - the only numbers that look like that are on the unit itself #DS6HFLG and on the humidifier there is a #REF 460P and a serial number. Do these tell you anything??

As far as the sinus issues - it is extreme congestion with clear drainage and sneezing. Normally do not have sinus issues until spring when the pollen is high. Going to doc this afternoon to get something for it.

The humidifier was initially set to 3. I was told to increase and/or decrease as needed. I have done so with it on every setting from 1-5. Too much makes it more difficult to breath in and not enough dries out my mouth and throat. Middle of the road seems to be most comfortable, but like I said, I had no issues with sinus (save pollen season) until I started using the cpap machine.

Also, it's the exhalation that seems hard to get out - like blowing through a coffee stirrer. And it doesn't seem like I get all my breath out before it starts blowing again.

[Pugsy]

#REF 460P

This is the machine model number.

you just chose the wrong one in the PR SystemOne 550..which is the APAP model and your machine is not an APAP machine..though it does offer some limited APAP functions.

This would be your machine choice in the equipment menu for profile...
PR System One 60 Series Pro CPAP machine...it's there and it should be a working link.

The humidifier is a different choice from what you have chosen
PR System One 60 Series Heated tube humidifier with heated tube (even if you don't have the heated hose)..it's the only choice that works for the 460 machine.

Does your hose have a black end where it attaches to the humidifier or is the hose white/gray on both ends?
If it is black then you have the heated hose and additional options are available to hopefully help your sinus symptoms.

It's probably not a real infection but most likely cpap rhinitis caused from the nasal mucosa not liking the humidity that is being delivered and/or maybe air temp.
And yes..some need more added moisture and some need less and some people don't need any.

From personal experience when I chose the wrong way to go (for me that was down) it's going to take 3 or 4 days to likely see much improvement. So you may need to give a change a little more time if you can.
It's funny...when I did my experiment with lowering the setting to 1 (from 3) the discomfort was immediate and I knew for sure the very next day I shouldn't have done that but it took me 3 full days to get rid of the congestion, drainage and pressure discomfort.
Similar reaction 3 other times when I forgot to add water to the tank and it went dry for most of the night...so I know the cause.
I do know it is sheer misery dealing with it though and adding it in to all the other stuff with mask and pressure...makes for a bad night for sure.

And it doesn't seem like I get all my breath out before it starts blowing again.

Play with the CFlex exhale relief settings....1 through 3...see which one feels more in tune with your own breathing rhythm.
I found a setting of 3 made me want to breathe too fast...like it was rushing me.
The actual reduction in pressure when using Respronics Flex options is based more on your own breathing and the potential for more reduction.
How Flex works is really more about when the reduction in pressure occurs and not so much about how much of a reduction.
Setting of 3 seems fast to me...1 is slow but 2 worked great...
So play with the setting choices. I don't know if you get a choice between AFlex or CFlex....but if you do...try both of those.

If using ramp...see if you can do without it. Ramp reduces the pressure to 4 cm and most people have problems with that pressure because not enough air seems to be moving.

Since you mention settings 1 through 5 on the humidifier...if you have a heated hose those settings are for air temp only.
If you have a non heated hose...then it's for humidity delivery and temperature is secondary.
If you have the heated hose we can go into the clinical menu and set it for a more specific humidity % delivery and use a separate temperature for comfort.
So it makes a difference which hose you are using.
The heated hose is an option. Some DMEs supply it routinely...and it takes not only the special hose but a different power supply.
Sometimes the DMEs will do the power supply and special lid on the humdifier but not the heated hose...

The heated hose needs the 80 watt power system.
The other power system is 60 watt I think it is
A non heated hose can be used on the 80 watt system though...

Do you have the provider/clinical manual for your machine? If not go get it here..just be sure to ask for
Respironics PR System One 60 Series REMstar Pro with C-flex+
http://www.apneaboard.com/adjust-cpap-p ... tup-manual

It explains how to get to all this stuff I was talking about...like humidifier choices if using heated hose and changing the Flex setting because sometimes the DME sets the Flex setting so you can't play with it.

Also...here's a brief "how to" with pictures and there's also a video...it's generic for all models of the PR S1 machines but the basics are the same with all models.
http://www.apneaboard.com/pr-system-one ... structions

Oh....for the nasal issues now...I found that something like Simply Saline helps a lot and I can use it as often as I want.

[kteague]

... said it was set to 14 with ramp function... I do sleep with my mouth open when I can't breathe through my nose and I have noticed the last couple of nights that it seems I can't get a good breath out when breathing through my mouth. It almost feels like trying to breathe out through a coffee stirrer.

While you are working through the mask issues, just want to mention about the ramp. Usually the ramp is set by the provider to start at a very low pressure, like 4 or 5, and increases incrementally to your prescribed pressure during the ramp time period. If you require a pressure of 14 and begin to doze during the ramp period, you are not protected from events. If your breathing discomfort is during your ramp period, I would suggest increasing the starting pressure of your ramp range, shortening your ramp time, and/or turning ramp off. Keep in mind that any time you restart the machine during the night, the ramp restarts.

Finding the mask that works for you is such a personalized thing. I ended up with a pressure sore on my nose early on so I am sympathetic to what you're going through. A family member told me they had nose issues and leak issues and they are now successfully using at FitLife mask which covers the whole face and doesn't touch their nose. Good luck finding one that makes your nights better instead of worse.

EDIT: I see that ramp got covered while I was typing. Consider this a ditto.

[MSBryant]

I wasn't aware I was "allowed" to change any if the settings except the humidity level. The DME girl hasn't even bothered to check up on me since she gave if to me. The only time I have even talked to ANYONE at the DME was the 2 times I called regarding the mask and my nose.

There is a apparatus that is attached to the back of my machine - it has an antenna and (unbeknownst to me until I turned over the machine to get the right mold number) it has a card reader with a card.

The DME girl said that after 30 days they would have me being in the attached part for something and that I HAD to use it at least 4 hours a night. SERIOUSLY?? If I could sleep a full 4 hours at a time I probably wouldn't need the machine!! Lol!!

I do believe your "diagnosis" of "cpap rhinitis" could be right, but I started having issues shortly after I started using the machine about 2-3 weeks ago and only started playing with the humidity levels the last couple of nights.

Btw - I live in Mississippi and the humidity here as a rule is high.....so I'm not sure one setting would be a constant as our weather can change from rainy and cold to sunny and warm in a matter of hours.....this too drives me insane!!

Also - did I change my details correctly??

[Pugsy]

Yes, your equipment choices all seem to correspond now like they should.

Have you determined if you have the heated hose or not?

Regarding changing things yourself...normally Humidity and exhale relief are considered "comfort" features and quite acceptable if we play with them.
When we start changing pressures the medical community seems to get their panties all in a wad..
But it never stopped me.
I don't suggest that people go changing pressures willy nilly though. They need to understand what they are doing and why and be comfortable doing it.

Now the comfort settings.. they are fair game and it is a rare DME or doctor who gets upset with changing those.

Yes, I understand Mississippi humidity. I lived in Alabama a few years and even now here in SW Missouri our humidity is often fluctuating dramatically. These new machines are supposed to help stabilize the humidity though....but as with anything else..it's not perfect and we don't know where to start until we start. Your DME chose 3 setting because it was the middle range of whatever it pertains to.
What it pertains to depends on the hose you are using....heated or not.

Does a hot steamy shower help open up your nose and offer some relief?

[MSBryant]

No, I don't have a heated hose and yes a hot bath does open me up temporarily.

[Pugsy]

Without the heated hose the machine defaults to the "new system one humidification" mode which tries to maintain a constant humidity (they never tell us what %) by using sensors in the machine that take the room ambient humidity and make adjustments using heat and often less water. Originally designed more for rain out (condensation in hose or mask) control than patient comfort.

When you increase the setting on the machine as it is now you are increasing both the temperature of the air in the hose as well as humidity being delivered...and depending on your ambient room humidity it may or may not be all that much.

The heated hose allows for 3 different humidity settings to be available 70%, 80% and 90%.
The temperature selections are 1 through 5 with the lowest being 4 degrees above the ambient room temperature and 5 being around 16 degrees above ambient room temp.
So you can use a lower temp without sacrificing humidity or use a higher temp at lower humidity if you wish.
Greater customization so greater chance of figuring out what work best for you because it's going to try to give you what you select all the time instead of the way it is being done now.
Though even the way it is now..is still an improvement over the old way that I used back when I first started therapy nearly 5 years ago...
Now with the heated hose and greater customization choices...it's even better.
Still trial and error but more tries are available than just a couple of settings on the humidifier.