Where A CPAP Newbie Should Start

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
jules
Posts: 3344
Joined: Mon Nov 27, 2006 10:51 pm

Re: Where A CPAP Newbie Should Start

Post by jules » Fri Sep 25, 2009 6:24 pm

Welcome randik, however, be aware that many of us don't do things like the "book" and freely tweek our therapy as we have found the sleep labs and sleep docs aren't perfect. We aren't afraid to openly post that we do this either. We hope you stay around and at least be moral support to others here and their journey to improve their lives.

There is plenty to read on this forum besides just the stuff in the first post of this thread.

Any for anyone who actually reads this, I am no longer able to edit that first post and correct the broken links. Because of people abusing the forum "freedoms" the number of pdf links has been limited in a post I was once told, so this is stopping me from editing that post.

Jules

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sheepdog
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Location: Central Florida

Re: Where A CPAP Newbie Should Start

Post by sheepdog » Thu Oct 01, 2009 3:30 pm

Hello all. Sheepdog here. I've been on cpap for over 10 years with varying degrees of success. Recently my OSA started sending me to the ER with TIA strokes. Of course the doctors and specialists looked for every thing they could think of. High BP, Cholesterol, injuries, all manner of stuff. Nobody could say after the first one what it was causing the strokes.

After the second one I lost the ability to speak intelligently for half an hour. That one scared me pretty good. CT scans and MRI didnt find nuttin'. It was my idea to get another sleep study.

I was sleeping poorly with a FP 220 and breeze with large pillows that was apparently leaking badly. So I wasnt getting anywhere near the 15cm/h20 I was supposed to.

After the sleep study they threw away my breeze, set me up with a Swift LT and a Respironics Auto CPAP at 19 cm/h20.

Big difference! The Swift didnt make it as the pressure was just too much for the pressure. I am hoping the full-life will be ok.

OSA is a big pain whatever the equipment. But strokes and worse is nowhere!

I hope to finally learn what I can do to stay alive for my spouse. I have read the newbies posts and the wisdom section also.

I hear the Fulllife mask is very new. I hope it works for me!
Respironics model 510 Auto Cpap w/ respironics heated humid. 14000 hrs as of Oct 23 2013
Swift LT / Comfort Gel Masks
Set to auto 10-20 cm/H2o setting.

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TWW
Posts: 117
Joined: Fri Oct 02, 2009 2:46 am
Location: Philippi, WV

Getting Started in VA

Post by TWW » Fri Oct 02, 2009 3:30 pm

Hi, my name is Tom and I am a hosehead....

I saw that word while lurking on this forum, and knew it would be a safe place.

Warning: Tom is wordy. He likes to hear himself type.

Anyway, my background: I've been a loud snorer all my life, bull neck (even though my weight rarely exceeds 180). I had shoulder surgery a couple of years ago, after which the anesthesiologist told my wife that I had (have) sleep apnea at a risk level of 4, whatever that means.

Soon after, I went for a sleep study, required before the pulmonary folks would even see me. At the sleep study they would not let me lay on my side, nor would they let me take diphenhydramine. To add to the adventure, I had my first-ever claustrophobic experience from the myriad wires, straps, nose-doohickeys, tape, and conductive goop that were variously fastened to my body. As a result, I did not sleep more than a few minutes, if at all. More importantly, the sleep center we dealt with had no data to work with, and there was no followup. I decided <bleep> it, I would live dangerously.

Having turned 50 this spring, I told my family physician that I was ready to give it another try -- with a different sleep center that would talk with me first. A much different experience -- they let me play with some CPAPs in their office, they encouraged me to set up as comfortable an environment as I could, including a pink noise generator and Benadryl, and even offered to supplement it with stronger stuff if needed.

So, I had my new sleep study this past Sunday, a two-parter. Still claustrophobic (I nearly fainted, he said shyly), but this time we were ready for anything, so the tech took a break, put a fan on me, and talked about musical instruments for 10 minutes. According to his colleagues, I got the best tech in the world...

They found me to have fairly constant apnea -- around 60 episodes per hour, oxygen level down into the low-to-mid eighties, which they tell me is organ-damage territory. The tech fitted me in the middle of the night with a Quattro, which worked well enough when I started out asleep, but which turns out to interfere with reading glasses. I like to read and play PDA games to get sleepy.

Monday morning, I debriefed with the doc (a coffee gourmet, he roasts it at his home, grinds it at the office, and makes the best coffee in all of Richmond -- and this at a sleep center!), and then met with Monday's vendor (vendors take turns). Straight CPAP got me going claustrophobic again, so we went with a bipap. My mouth goes dry so we went mouth-and-nose, and added a humidifier. I want to try to read, so we switched from the Quattro to the Full-Life, which almost lets me wear the reading glasses.

The vendor lady said that I would adapt within a couple of days.

Uh-huh.

I took a vacation from it Monday night (I guess sort of like a smoker's Last Cigarette), and have tried to get to sleep with it the past three nights, and although I am getting more relaxed, I don't think I have slept more than 10 or 20 minutes with it running. I woke at 3 this morning, worrying that I was a hopeless case, and (like another who posted here) worrying about "making the insurance people happy."

Unable to sleep, I googled CPAP Problems, or CPAP adaptation, or something like that, and found this forum. I read posting after posting by people who took months to adapt, and realized that in that respect, at least, I am right on track.

Woo-hoo! I'm normal! Yippee!

As I wrote at the top of this missive, I can tell that this forum is gonna be a safe place. Thanks, already, for what y'all have done. I look forward to getting a lot from you up front, and giving back in the future.

_________________
Mask: Forma Full Face CPAP Mask with Headgear
Additional Comments: First four-hour compliance: Nov 20, 2009
-Tom Williams

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GaryG
Posts: 537
Joined: Thu Jul 23, 2009 5:55 am
Location: CT

Re: Where A CPAP Newbie Should Start

Post by GaryG » Sat Oct 03, 2009 2:27 pm

Tom it is very easy to get discouraged. And you have lots of company here. I mean who in their right mind wants to stick a mask on their face attached to a hose on this machine that blows air? Not too natural, huh?

There are many masks, and it is not unusual to go thru a series of them before you find your "mate." I'm on my 6th myself, and I think I may finally have found mine (Fit Life). Its bulky, big, covers entire face, but I'm getting leaks way down, and have minimized my AI, and still tweaking. And this is after 5 other masks over two months.

Stay with it, ask tons of questions, and there are a whole lot of bright and talented folks, which have tried a variety of masks and ways to make this CPAP thingie work.

Important thing is to get a machine which records data, and then get the software. Good luck on the beginning of your journey, and glad you found this place. Welcome.

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DLB
Posts: 38
Joined: Wed Jul 08, 2009 8:42 am
Location: Pittsburgh, PA, USA

Re: Where A CPAP Newbie Should Start

Post by DLB » Sun Oct 04, 2009 7:29 pm

The.sheepdog wrote:Hello all. Sheepdog here. I've been on cpap for over 10 years with varying degrees of success. Recently my OSA started sending me to the ER with TIA strokes. Of course the doctors and specialists looked for every thing they could think of. High BP, Cholesterol, injuries, all manner of stuff. Nobody could say after the first one what it was causing the strokes.

After the second one I lost the ability to speak intelligently for half an hour. That one scared me pretty good. CT scans and MRI didnt find nuttin'. It was my idea to get another sleep study.

I was sleeping poorly with a FP 220 and breeze with large pillows that was apparently leaking badly. So I wasnt getting anywhere near the 15cm/h20 I was supposed to.

After the sleep study they threw away my breeze, set me up with a Swift LT and a Respironics Auto CPAP at 19 cm/h20.

Big difference! The Swift didnt make it as the pressure was just too much for the pressure. I am hoping the full-life will be ok.

OSA is a big pain whatever the equipment. But strokes and worse is nowhere!

I hope to finally learn what I can do to stay alive for my spouse. I have read the newbies posts and the wisdom section also.

I hear the Fulllife mask is very new. I hope it works for me!
Sounds like you could use a PulseOx to make sure you getting the oxygen you need! My pulseOx is what triggered my to have a sleep study. Hopefully, I get my xPAP in about a week.

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 50 Series Heated Humidifier
Additional Comments: Mirage Swift FX Nasal Pillow Mask, Contec CMS-50E Pulse Oximeter, M Series Auto with A-Flex as Backup , Several backup masks.

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sheepdog
Posts: 16
Joined: Mon Sep 28, 2009 5:48 pm
Location: Central Florida

Re: Where A CPAP Newbie Should Start

Post by sheepdog » Sun Oct 11, 2009 10:52 am

Pulse Ox? Oximeter? O2 Saturation perchance? do I get that from a DME or from my Dr? and what does it tell me? If I need O2 added?

Thanks
Respironics model 510 Auto Cpap w/ respironics heated humid. 14000 hrs as of Oct 23 2013
Swift LT / Comfort Gel Masks
Set to auto 10-20 cm/H2o setting.

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DLB
Posts: 38
Joined: Wed Jul 08, 2009 8:42 am
Location: Pittsburgh, PA, USA

Re: Where A CPAP Newbie Should Start

Post by DLB » Sun Oct 11, 2009 12:45 pm

SheepDog,

Yes Pulse Oximeter. They don't require a prescription and can be purchased online. See the model listed in my signature as one that is working well for me and comes with nice reporting software and USB interface and charging cable. Many require you to buy external software so be careful what you buy. Also many of the lower cost models don't have recording capability which is what you need to track your SpO2 and heart rate for the entire night while you sleep.

DLB

_________________
Mask: Swift™ FX Nasal Pillow CPAP Mask with Headgear
Humidifier: PR System One 50 Series Heated Humidifier
Additional Comments: Mirage Swift FX Nasal Pillow Mask, Contec CMS-50E Pulse Oximeter, M Series Auto with A-Flex as Backup , Several backup masks.

Pudd
Posts: 13
Joined: Tue Oct 20, 2009 12:13 pm
Location: canada

Re: Where A CPAP Newbie Should Start

Post by Pudd » Fri Oct 23, 2009 3:55 pm

Thanks alot Jules,there is a lot of usfull info.
Pudd

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MaskHumidifier

mdube
Posts: 2
Joined: Fri Oct 30, 2009 6:41 am

Re: Where a newbie should start

Post by mdube » Fri Oct 30, 2009 6:48 am

turbosnore wrote:As a newbie and foreigner (Finn) Both first and second link were welcome.
Thanks.
I just found out that I have sleep apnea, and my doctor wants to fit me with a mask, I have clastrophobia, something tells me this is going to be diffucult, does anyone else have this problem, how hard is it to get used to?

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Pugsy
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Re: Where A CPAP Newbie Should Start

Post by Pugsy » Fri Oct 30, 2009 6:57 am

mdube wrote:I just found out that I have sleep apnea, and my doctor wants to fit me with a mask, I have clastrophobia, something tells me this is going to be diffucult, does anyone else have this problem, how hard is it to get used to?
Lots of people have claustrophobia. There are ways to battle it. Why not go down to "Post a New Topic" and start your own thread with your question and problem. People will chime in with lots of ideas and they won't get lost in this thread here. You can get past it though.
I may have to RISE but I refuse to SHINE.

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Joe50
Posts: 215
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Re: Where A CPAP Newbie Should Start

Post by Joe50 » Fri Oct 30, 2009 1:53 pm

Hello everyone, not new to cpap but new to forums.

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BigNortherner
Posts: 205
Joined: Mon Jun 12, 2006 8:20 pm

Re: Where A CPAP Newbie Should Start

Post by BigNortherner » Sun Nov 15, 2009 2:07 pm

I offer newbie tips on strategy.

First, recognize that CPAP is not a panacea, nor the only method of treating OSA (losing weight helps but many of us are challenged at that task , and OSA is not the only barrier to sleep. (For example, having to get up to urinate then not being able to fall asleep again.)

Learn your equipment thoroughly. For example, the poor user interface of the classic Remstar makes it easy to get humidifier heat set wrong. And mask/headgear adjustment to stay in place is critical.

Try to find a competent caring medical advisor. An example of otherwise is the doctor in an established sleep medicine operation who said it was OK to sleep on one’s back because the CPAP machine would prevent OSA, yet was very concerned about higher pressures which might be necessary in that case – and ignored that during the sleep test to establish recommended pressure the user slept on his side. (The discussion occurred because his business was not properly advising people on masks.)

Try to find an advisor who is familiar with the range of interfaces available and be able to get them – some may stick to very few brands. Testing them yourself by buying them on the Internet is costly. (I am now in the position of knowing enough to judge whether a new design is likely to be worth trying just by reading the description and viewing the illustrations, though I may reject some prematurely because the seller cannot communicate what it really is.

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Jaylee
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Re: Where A CPAP Newbie Should Start

Post by Jaylee » Mon Nov 23, 2009 8:44 pm

Hello everyone. I am introducing myself I am Jaylee, and I have been using my BiPap machine for about one month now. I am anxious to come back tomorrow to add in the info from my machine/mask/etc, but for now I must go get some sleep, as I am working early in the morning. I am thrilled to have found this forum

_________________
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear
Additional Comments: Pressure 18/13.

BigNortherner
Posts: 205
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Re: Where A CPAP Newbie Should Start

Post by BigNortherner » Tue Nov 24, 2009 1:42 pm

As well I'll note the Wikis/FAQs on this site are generally good.

new blee
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Re: Where A CPAP Newbie Should Start

Post by new blee » Sun Jan 03, 2010 11:52 pm

This, myvery first words of a forum that will be very helpful.I"m very new in that I had 1st SleeepStudy in November, My titration study New'sYears Day, and by follow up in three week ot recommmend mask?nasal) and results,machines to buy etc. As another Nurse, I found a relevant info came from my patients.I"m your patient now and feel I'm going to learn alot! I'don' have machine, mask type,etc as they will fill me in,
! Never Knew I could have this, but from what you've been telling me,things will be cool and with patience will work out. Don.t mean to be longwinded intially...Just exicited about jumping in this with my eyes wide open 'and a little bit of help from my friends" Many Thanks so far for great info and moral support!!!