Another newbie

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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GoodBadAndUgly
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Another newbie

Post by GoodBadAndUgly » Mon Nov 24, 2014 6:28 pm

Hello. My name is Eddy. I am a less than 6 months CPAP user and have had some struggles, but keep plowing ahead. I guess the reason i may be reaching out may be already addressed by previous users, but............busy lives makes for short attention spans.
My CPAP history was a struggle to get started, but after a couple of months i got the hang of it and was actually enjoying it. A few setbacks can mess with your mind like:
1. My insurance sleep coach says its not good enough
2. An errant letter from the CPAP machine that i had to send it back!
3. Diagnosed with pneumonia last week and not having worn the CPAP at all for 2 weeks!

I was driven out of my curiosity that i have never had Pneumonia before and was wondering if there was a link between CPAP machines and higher risks of pneumonia. I found an article that was too broad of topic on WEB MD that just said "Sleep apnea has a 9% higher risk of pneumonia whether you wore a mask or not". Thats nice and all but not very specific.

I hope some of you can point me the right direction for information and share your own experiences. I am going to try and get back in the groove and use it tonight, so wish me luck and thanks for an outlet of peer support. This could be good!

Eddy

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Julie
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Re: Another newbie

Post by Julie » Mon Nov 24, 2014 6:44 pm

Hi Eddy, welcome.

Did you get a reason for what the coach said? Was it about compliance hours or something else?

What machine do you have - specifically, i.e. model # should be on bottom of unit (not humidifier but blower), but don't turn it over til water's out of humidifier or you'll fry your machine). The # may start with Ref or something else, but may say something like 560 or another '60', or something lower like 450, etc. But there may also be a name on the front (please don't just say 'Resmed' because a million machines have that on them going back yrs and series).

And what mask are you using? Is it comfortable? Leaky? Need to be overtightened to not leak?

Do you take meds?

How much sleep do you get nightly and is that fairly consistent? I mean hrs, vs possible interruptions for bathroom once asleep...

Do you know what your AHI has been (not the result of the study, but now)?

Do you know what your pressure settings are?

And that's just for starters! But really can help us to help you. Sorry can't comment on pneumonia, but others will.

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ChicagoGranny
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Re: Another newbie

Post by ChicagoGranny » Mon Nov 24, 2014 6:52 pm

GoodBadAndUgly wrote:wondering if there was a link between CPAP machines and higher risks of pneumonia
There is a link between not using CPAP machines and higher risks of heart disease, stroke, diabetes, anxiety, depression and death.

I hope WebMD understands relative risk and the difference between causation and correlation.

Did you docs talk to you about pneumonia vaccines and flu vaccines?

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GoodBadAndUgly
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Re: Another newbie

Post by GoodBadAndUgly » Mon Nov 24, 2014 7:18 pm

Thanks Julie.

20 questions to which i only know the answer to a few. but thats why i am here. If you are going to do this, you should know (teach yourself) and keep control of whats going on!
It is a muddy bumpy road just to get in a comfortable position with this stuff and i hope my eyes are opened to alot i may have not thought about.

My compliance has been outstanding, but i have gotten feedback that i am not completely getting the full use. I suspect it has to do with my mask as they amazingly DO wear out.
I got a new mask and its been much better.

I think i am averaging 8 hours of sleep a night, with the mask being on for 80% of that time.
i have a 460 machine?
7.5 cm is my current setting
No other meds.

My setback with the pneumonia was weird and had a week long fever, then a week long of dry raspy cough. I tried to tie on the machine a couple times, but coughed my eyes out and relented. I went to the doc last Thursday and they found some fluid and put me on antibiotics and inhaler. Cut to 4 days later and i feel alive again....just tired. Its a slow road to recover from things. Still coughing alot, but its bearable. I am just not sure how the machine will be. by the way, its a face mask type over the nose and mouth. Still trying to find the best position for it as once i am asleep i have no idea whats happening. Sometimes i wake up with it off, sometimes i wake up and its still on and feel great. it definitely has made a difference as my study showed i quit breathing 38 times per hour. Never realized it was that bad........i am sleeping through it after all. Thats the most amazing part, is how little i know about how i sleep. I depend on my wife for lots of answers, but she is trying to sleep too. But i have entered this new phase with an open mind and open heart....mostly out of curiosity to see what it would be like; to see what a real nights sleep could mean to my "awake" time. I think i have started off on the right foot, now i want more!

Thanks for listening,
Eddy

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Julie
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Re: Another newbie

Post by Julie » Mon Nov 24, 2014 8:06 pm

Hi - you might want to get started looking at the yellow bulb (top of the pg) and the links involved as it can explain some stuff more quickly. So, you have what's called a 'full face' mask, vs a 'nasal' one (nose only), vs a 'total face' one that actually covers most of your face, but tends to leak a lot and only a handful of people use them. Which FFM do you have (name?)? And when I said not to just say 'Resmed' I didn't mean not to include the brand (if that's it... tho' could be Respironics, or Intellipap, etc.), so it will help a lot to know that much.

So you're just on straight Cpap rather than A(auto)pap? Only one setting vs two?

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TangledHose
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Re: Another newbie

Post by TangledHose » Mon Nov 24, 2014 8:14 pm

Hi Eddy,

There are lots of very helpful folks on this forum, so I think you've come to the right place. I wanted to comment on your question about CPAP and Pneumonia. I have been on CPAP for ten years now and I notice that since starting my therapy I have far fewer colds and since using a humidifier on the machine my sinuses have never been so clear and happy. I live in a dry climate so for me the humidity has really been beneficial. I do periodically clean my CPAP equipment but I am not obsessive about it and I get somewhat lazy with my cleaning schedule. So my point is that I am highly doubtful that your recent bout of Pneumonia had anything to do with your use of CPAP, on the contrary I think good CPAP therapy would actually tend to strengthen you immune system overtime because untreated Apnea can seriously impair you immune system.

It is certainly natural to point a finger at something as a cause for illness, we all do it, but Iwould suspect that your pneumonia was a bit of bad luck and you got it for the usual reasons rather than from using CPAP. It is however important to find the right amount of humidity for your own situation, I enjoy loads of humidity because it is dry here, but many other people prefer much less humidity for various reasons like maybe they live in a high humidity area. So you might adjust your humidity setting either up or down and experiment with it until you find the sweet spot for you -- of course I am assuming your machine has a humidifier.

On another note a lot of the information and help with your equipment and settings comes from very knowledgeable folks on here, but they will need more information from you about your machine, your present settings, mask type, etc.

I just wanted to add my two cents about the pneumonia and the lack of any correlation with the CPAP.

Good luck with it, and hang in there with your therapy.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

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GoodBadAndUgly
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Re: Another newbie

Post by GoodBadAndUgly » Mon Nov 24, 2014 8:19 pm

Phillips Respironics and just the full mask, not the nose only and not the full faceshield type.

It is just one speed, that i can ramp up if its too much to start with. I usually only just turn it on. It was too low for awhile and i would wake up choking once in awhile but that seems to have gone away by adjusting the pressure. I think my sleep position has alot to do with it as i have woken up with it twisted off and leaking. I usually go to sleep on my side (i will explore a pillow soon), but either wake up on my back or my other side. If i wake up on my back (or slightly towards my side) it has been on all night. If i wake up on my going to sleep side it is usually not as good of a night. i have found my sleep position is critical, but conditions beyond my control have a bearing on it as i need a cold sleep. if its hot at all i will toss and turn. I have a new memory foam bed to sleep in, but have not used the mask enough to see how that affects the sleep. I am going to play with pillows once i reestablish my mask sleeping.

I will explore more and see how things develop. Thanks for the light bulb. I will check that out next.

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GoodBadAndUgly
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Re: Another newbie

Post by GoodBadAndUgly » Mon Nov 24, 2014 8:30 pm

Hi tangledhose!

Im not trying to imply that my CPAP caused my pneumonia, its just the coincidence of it all made me wonder. I am in Colorado too and love a good dose of humidity myself.
I heard a story once i got sick about someone that got pneumonia when she started her machine, but there were other circumstances with her as some of it was heredity, pets, asthma, etc. I needed to explore what was going on, so if i gave that impression that i was hell bent on blaming the machine, i apologize.

As for the humidty thing, i wish my machine would go higher on the humidity! its still very drying to have the constant flow of air. I have mine set all the way up and even all night its not that much. My recepticle is only about 16 ounces and barely half is gone in a full night of use.

Looking forward to more and thanks for the welcome.

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TangledHose
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Re: Another newbie

Post by TangledHose » Mon Nov 24, 2014 9:02 pm

Nice to hear that you are also in Colorado! I am a native, and although I have traveled to sea level extensively, I never realized how much my sinuses suffer up here from the dry air. When I started with CPAP I found to my delight that my sinuses really cleared up and felt better, and breathed easier all day. I guess I never paid much attention to how much of a mouth breather I was in the past. So for me the CPAP has provided some terrific side benefits. My dentist can even tell the difference since I am not mouth breathing at night anymore. I think if I was ever declared Apnea free without the machine I would still use it nightly for all the other side benefits! Of course I know that scenario will never happen (Apnea Free) ;+)

At any rate, up here the more humidity I can get from the machine, the better -- I even have to refil my humidifier tank most nights because I run out of water if I go for a full 8 hours on the machine.

All the information I've gotten from this forum has been very helpful, so hang in there and soak up everything you can here.


_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

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Pugsy
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Re: Another newbie

Post by Pugsy » Mon Nov 24, 2014 9:58 pm

If you have the PR System One model 460 machine you do have some additional options to perhaps increase the humidifier output.
Are you using the optional heated hose? If you don't know for sure look at where the hose attaches to the humidifier and if it has a black coupling at that connection you have the heated hose.
If it is white/gray on both ends without any black on it you don't have the heated hose.

Using the heated hose opens up some setting options to where you can get the machine to deliver more moisture and hopefully not get that little annoying side effect of condensation in the mask or hose.
You need to have the machine be heated hose capable though...so just buying the heated hose may not work if the lid doesn't have the plug in for electric and the power supply brick isn't 80 watt.
There is a kit available though...to retro fit the humidifier so you could use a heated hose if you wanted.
The heated hose allows for a more controlled and constant humidity delivery ...up to 90%.

Without the heated hose you still have some options but the chances of rain out (condensation) will increase depending on your bedroom ambient temps.
The default humidity setting for the PR S1 without heated hose is for the "new system one humidification system" which uses sensors to help regulate humidity delivery. The maximum setting of 5 might not be enough for some people using this "new humidification system"...it wasn't really sufficient for me plus with my really cold bedroom the air wasn't warm enough to suit me.

You can go into the clinical set up menu though and change it from the "new humidification system" to "Classic Mode" which is essentially what we all used to use back before we had all these sensors and heated hoses.
Classic Mode pretty much gives a much more steady or consistent heat to that warmer plate and it will put out more moisture. So a setting of 5 in Classic mode will put out a lot more moisture than a setting of 5 in the "new humidification system".
With more moisture though comes the chance of that air in the hose or mask cooling due to bedroom temps if you have a cool bedroom and when air cools it releases the moisture...rain out..condensation which won't hurt you but is highly annoying. There are ways to prevent rain out though...we used to do it all the time years ago before all these fancy doo dads on these machines.

So you can make some adjustments and get more humidity if you wish.

If you are already using a heated hose then perhaps you didn't know that the humidity selection for when the heated hose is connected has to be done in the clinical setup menu. With the heated hose connected that knob on top of the machine only controls the air temp in the hose.

_________________
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I may have to RISE but I refuse to SHINE.

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ChicagoGranny
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Re: Another newbie

Post by ChicagoGranny » Mon Nov 24, 2014 10:04 pm

GoodBadAndUgly wrote:its still very drying to have the constant flow of air
What is feeling dry? Nose? Throat? Mouth? Other?

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GoodBadAndUgly
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Re: Another newbie

Post by GoodBadAndUgly » Tue Nov 25, 2014 6:05 pm

Thanks for the pointer Pugsy! I will definitely check into it.

Chicago Grannie, its mostly mouth dryness.

I made it 6 hours last night and woke up jumping out of bed. Dont get me wrong, i was still a little tired this afternoon at work. Sometimes you need to take a sample of where you was before/after. Before the machine.............i could take a nap anywhere/anytime! Now that i can get some real sleep.......that is the goal after all right? its nice. Nice enough to want more like some hyperbaric chamber with loads of oxygen and massaging vibrations while we recharge.