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Your Personal CPAP Success Story - Post Here
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glfredrick Offline

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Posts: 38
Joined: Apr 2014

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Quatro Mirage
Humidifier: ResMed H5i
CPAP Pressure: 14-18 auto
CPAP Software: Not using software

Other Comments: Bi-vocational Pastor

Sex: Male
Location: Near Sheboygan, WI

Post: #421
RE: Your Personal CPAP Success Story - Post Here
Another new guy, but not new to either forums or Cpap, just this site.

Found you on the web while looking up instructions for setting up the S9. I just bought one to replace my old M-type that has been working hard now for almost 8 years. It is about to give up the ghost (making a lot of noise and pressures are way off) but I've only missed about 3 nights of use in those 8 years with an average nightly use of just over 6 hours.

I use a quatro mirage FF mask and they have served me well, but I notice that quality seems to be going downhill of late. Just can't get as comfortable (or as good a seal) as earlier, but that may be my aging face.

Does CPAP work for me? I'm alive and typing, so I'd say yes! With a lower than 80% initial oxygen level and 50+ events per hour I was certainly a ready candidate to not survive into my 50s. Now, I'm nearing the 60s and doing fine. I have central and obstructive, and with an 18 pressure anyone who knows knows that I am really pumping... I'm rather used to it but it took a while to get there. Feels funny when the machine doesn't pump me up these days! It will be nice going to a more automatic machine (I got the auto version). I'll set min and max pressures to 14 and 18 and see how it goes. I never use a ramp, so that isn't an issue and I got over exhale control years ago. I have strong enough lungs, just have issues with obstruction and central apneas.

Looking forward to not being quite so tired during the day with the new machine. I think the old one is more for show than go these days and it shows when I fall asleep sitting up. I've managed my own care since about the 2nd year of therapy. My sleep doctor was, well, a word that describes a biblical beast of burden... That, and the co-pays just from office visits were eating me alive. He'd have a nurse practitioner check my card and and say, "all good" and charge me about $1500! I can do that and pocket the money.

Ordered the new machine from breathe easy. They also got me the Rx. Just waiting for it to arrive and I'll continue on the next decade of treatment.
04-28-2014 04:02 PM
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SuperSleeper Offline

Administrators

Posts: 9,967
Joined: Feb 2012

Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
Humidifier: none
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead

Other Comments: Have diabetes Type II

Sex: Male
Location: Illinois, USA

Post: #422
RE: Your Personal CPAP Success Story - Post Here
Welcome to Apnea Board, glfredrick. Smile

Wow, $1500 to check your SD card is just plain crazy. Glad you're taking matters into your own hands!

Well-done

SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

04-28-2014 08:52 PM
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PsychoMike Offline

Advisory Members

Posts: 551
Joined: Aug 2013

Machine: ResMed S9 AutoSet
Mask Type: Other
Mask Make & Model: Varies with mood, ResMed F10 is my primary
Humidifier: ResMed H5i
CPAP Pressure: 12-17
CPAP Software: SleepyHead

Other Comments: asthma, cyclist upgraditis, just a little crazy (honest :D )

Sex: Male
Location: Alberta, Canada

Post: #423
RE: Your Personal CPAP Success Story - Post Here
Ok....a success story that will hopefully encourage all of you a little.

I've been on an APAP now for close to a year and a half. My diagnosis was not as scary as many on this board...I'm officially a UARS patient, which is a relatively mild form of OSA. Yes, my airway was closing like in "normal" OSA, but my brain would kick in faster to respond...Think of it like "mini apneas." I didn't get the big drops in my blood oxygenation and stops in breathing like in severe OSA, but my sleep disruption index was quite comparable to someone with severe OSA.

Well, after a while of doing what the DME said I should, I had improved, but it wasn't ticker tape parade time. So, with some good pointers from folks here, I started taking a bit more proactive role in my treatment. I started working with my DME to try different masks and eventually settled on a ffm that seemed to work for me. I've played with a couple variations on the theme, but I think I've basically settled on one now.

We also started with adjusting the pressure a bit. My DME is a firm believer in the "absolute minimum pressure possible" idea...I can understand where that comes from (trying to avoid issues adjusting to therapy, not triggering central apnea events and so on). We had managed to get some respectable results, but I still wasn't feeling great...better certainly, but not stellar. So, empowered with information, I went to work trying to find the "best" results for me. I started by investing a fair bit of time playing with different settings to find the humidity and temperature that worked best for me. Comfort first in my books Wink

That done, I started on a quest to see if I could knock down my leak and AHI numbers. I gave each setting a week to see how the results ended up....it was a lot of iterations, alternating between my two favorite masks, trying various changes in pressure to see what did best for which mask and how I felt. It was not a quick process....but ultimately, it has been extremely rewarding.

I am pleased to report that I have had an outstanding last 2 weeks at what I have to designate as my "sweet spot." My leaks are well controlled (extremely seldom above 20L/m), my average AHI has been 0.08 (yes, you read that right....I did a double take as well when I saw it on Sleephyhead...but I've reset my machine several times to make sure the 0.0 AHI nights were "real") and I don't think I've ever felt so good in the morning....refreshed and pretty dang energetic for on old dog Wink

If you're starting off, it can be a long process to adapt to therapy and to get to an optimum point for YOU. I can tell you that it is worth it. Most people won't be able to get to these kinds of numbers...many have a much more severe starting point than I did...but when you find YOUR "sweet spot" it can be golden. It's easy to become discouraged, but stick with it...the potential gains (in how you feel and for your health) are worth the effort.
(This post was last modified: 04-29-2014 12:11 PM by PsychoMike.)
04-29-2014 12:09 PM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,993
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #424
RE: Your Personal CPAP Success Story - Post Here
(04-29-2014 12:09 PM)PsychoMike Wrote:  I am pleased to report that I have had an outstanding last 2 weeks at what I have to designate as my "sweet spot."

That's a great story, Mike, and I'm sure it will be encouraging to others as it is to me.

Don't get discouraged, though, if you have a set back. Sometimes these sweet spots go away for whatever reason, but they do come back, too.

It's kind of like a batter with a .350 average who has found just the right swing and just the right bat. Then, for whatever reason, a slump comes on. The only thing to do is to keep on doing what you were doing.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
04-29-2014 12:59 PM
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retired_guy Offline

Preferred Members-2

Posts: 2,744
Joined: Jan 2014

Machine: ResMed S9 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: ResMed
CPAP Pressure: 10.6/14, EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Is it bedtime yet?

Sex: Male
Location: Beautiful, albeit very wet Oregon Coast

Post: #425
RE: Your Personal CPAP Success Story - Post Here
I do like your story Mike, good job that...

I have my own little success story to report too! For several days now I have been working up to the idea of sleeping without using my chinstrap. I can live with the chinstrap, but it's not something I really enjoy. The theory now being that maybe I have learned to keep my mouth shut at night. Last night, I did that. No chinstrap. It was great! I'm so proud of my brains for figuring out how to tell my body to keep my mouth shut.

I have always been a mouth breather. But as of last night, no more.

My leak numbers went up, but I believe that has more to do with the fact that my P10 was fitting quite loose now that it didn't have a chinstrap to hang on to. But even at that the numbers were very acceptable.

The other thing that was odd about last night is the miserable cats decided to go sleep in a different room. I wonder if it scared them that I no longer wore the chinstrap. More incentive, more incentive...........

This morning I did tell Mrs. Retired_guy that I slept all night without the chinstrap and successfully kept my mouth shut. "Wonderful dear," says she, "but I still think it would be best if you wore the chinstrap all day......."
04-29-2014 01:31 PM
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Gabby Offline

Preferred Members-2

Posts: 664
Joined: Dec 2013

Machine: ResMed AirSense 10 AutoSet For Her
Mask Type: Nasal pillows
Mask Make & Model: Philips Nuance Nasal Mask
Humidifier: ResMed AirSense 10 For Her
CPAP Pressure: 8-14
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Sunshine Coast, Qld., Australia.

Post: #426
RE: Your Personal CPAP Success Story - Post Here
(04-29-2014 12:09 PM)PsychoMike Wrote:  Ok....a success story that will hopefully encourage all of you a little.

I've been on an APAP now for close to a year and a half. My diagnosis was not as scary as many on this board...I'm officially a UARS patient, which is a relatively mild form of OSA. Yes, my airway was closing like in "normal" OSA, but my brain would kick in faster to respond...Think of it like "mini apneas." I didn't get the big drops in my blood oxygenation and stops in breathing like in severe OSA, but my sleep disruption index was quite comparable to someone with severe OSA.

Well, after a while of doing what the DME said I should, I had improved, but it wasn't ticker tape parade time. So, with some good pointers from folks here, I started taking a bit more proactive role in my treatment. I started working with my DME to try different masks and eventually settled on a ffm that seemed to work for me. I've played with a couple variations on the theme, but I think I've basically settled on one now.

We also started with adjusting the pressure a bit. My DME is a firm believer in the "absolute minimum pressure possible" idea...I can understand where that comes from (trying to avoid issues adjusting to therapy, not triggering central apnea events and so on). We had managed to get some respectable results, but I still wasn't feeling great...better certainly, but not stellar. So, empowered with information, I went to work trying to find the "best" results for me. I started by investing a fair bit of time playing with different settings to find the humidity and temperature that worked best for me. Comfort first in my books Wink

That done, I started on a quest to see if I could knock down my leak and AHI numbers. I gave each setting a week to see how the results ended up....it was a lot of iterations, alternating between my two favorite masks, trying various changes in pressure to see what did best for which mask and how I felt. It was not a quick process....but ultimately, it has been extremely rewarding.

I am pleased to report that I have had an outstanding last 2 weeks at what I have to designate as my "sweet spot." My leaks are well controlled (extremely seldom above 20L/m), my average AHI has been 0.08 (yes, you read that right....I did a double take as well when I saw it on Sleephyhead...but I've reset my machine several times to make sure the 0.0 AHI nights were "real") and I don't think I've ever felt so good in the morning....refreshed and pretty dang energetic for on old dog Wink

If you're starting off, it can be a long process to adapt to therapy and to get to an optimum point for YOU. I can tell you that it is worth it. Most people won't be able to get to these kinds of numbers...many have a much more severe starting point than I did...but when you find YOUR "sweet spot" it can be golden. It's easy to become discouraged, but stick with it...the potential gains (in how you feel and for your health) are worth the effort.

Good story PsychoMike and well done.
You make that "sweet spot" sound so damn good, I want one too Smile

Sleep Tight...
Gabby
04-30-2014 12:05 AM
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lafsa Offline

Preferred Members

Posts: 36
Joined: Mar 2014

Machine: resmed s9 autoset
Mask Type: Nasal pillows
Mask Make & Model: breeze
Humidifier: resmed h5i
CPAP Pressure: 9-13
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Undisclosed
Location: ny

Post: #427
RE: Your Personal CPAP Success Story - Post Here
(04-29-2014 01:31 PM)retired_guy Wrote:  I do like your story Mike, good job that...

I have my own little success story to report too! For several days now I have been working up to the idea of sleeping without using my chinstrap. I can live with the chinstrap, but it's not something I really enjoy. The theory now being that maybe I have learned to keep my mouth shut at night. Last night, I did that. No chinstrap. It was great! I'm so proud of my brains for figuring out how to tell my body to keep my mouth shut.

I have always been a mouth breather. But as of last night, no more.

My leak numbers went up, but I believe that has more to do with the fact that my P10 was fitting quite loose now that it didn't have a chinstrap to hang on to. But even at that the numbers were very acceptable.

The other thing that was odd about last night is the miserable cats decided to go sleep in a different room. I wonder if it scared them that I no longer wore the chinstrap. More incentive, more incentive...........

This morning I did tell Mrs. Retired_guy that I slept all night without the chinstrap and successfully kept my mouth shut. "Wonderful dear," says she, "but I still think it would be best if you wore the chinstrap all day......."


thanks for my laugh of the morning... i really like your wife...
04-30-2014 08:12 AM
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herbm Offline

Preferred Members-2

Posts: 852
Joined: Jan 2014

Machine: ResMed AutoSet S9
Mask Type: Oral
Mask Make & Model: ResMed Airfit P10 Nasal Pillow
Humidifier: ResMed H5i
CPAP Pressure: 11-16
CPAP Software: ResScan SleepyHead

Other Comments: Backup Mask: Innomed Hybrid FFM -- Oral+Nasal Pillows

Sex: Male
Location: Austin, TX

Post: #428
RE: Your Personal CPAP Success Story - Post Here
My CPAP story has been CHARMED from day one but now after 90 days of 100% compliance it is clear that mine is a SUCCESS.

Other than some initial problems with nasal congestion (which I overcame by getting OUT OF BED and clearing my nose) nothing has really been an issue for me.

Why? Three reasons....

1) Luck -- some of us are just fortunate

2) The help and support of this FORUM (and a few others) -- actually the HELP and SUPPORT of dozens of WONDERFUL PEOPLE who post

3) Commitment to DOING IT RIGHT -- this is the part where I had control, I read everything available, the problems people had, the solutions that were offered, the issue that arose and committed myself from the beginning to just USING THE MASK EVERYTIME I CHOSE TO LIE DOWN.

No exceptions. If I was going to get into the bed then I was going to wear the mask. NO EXCEPTIONS.

Although my experience was indeed charmed, I spent several night lying awake for HOURS waiting on sleep but REFUSED to give in and pull the mask off.

From night 1, actually from the FIRST USE, I took control of my own settings (see postings elsewhere) and just SET MY MACHINE where I though it would most likely work best; my early guesses were right and within a week I was close to my final settings though I continue to tweak them slightly even now.

I as incredibly lucky in that my first choice of mask (an F&P Oracle HC452) was special order and not available and in the meantime the Airfit P10 came to my attention so I just ordered the darn thing despite my expectation of chronic congestion and mouth breathing.

The Oracle was late, the P10 arrived, and my machine was ready so unlike so many others: MY FIRST MASK WAS NEAR PERFECT - about as perfect as it gets (so far.)

Not only did I get in on the AirFit P10 ground floor, I think it is safe to say that my experience and post help caused a LOT OF OTHER PEOPLE to order the P10 and MOST (almost all) of them thought it the best mask they had ever tried.

Talk about lucky (and a little bit smart Smile!!!!!

In any case, THANKS TO ALL OF YOUR WHO HELP or EVEN TRIED TO HELP or WHO FOLLOWED MY STORY.

Seriously, I MIGHT have succeeded without you but it was so much more certain and easy with your help.

So far I have never posted a single data chart but here is one that looks quite nice:

https://drive.google.com/file/d/0B9_MD9G...sp=sharing

[Image: edit?usp=sharing]

My AHI went nominal within a few days.

My leaks have always been nominal. 95% is never over 24, and even my max only exceeds that about once ever 5 days or so. (Always put the mask on before turning on the machine, always turn off the machine before taking the mask off.)

If you HEAR or FEEL a LEAK, fix it. It's a rule.

If it whistles it is a LEAK. Fix it.

If it "blows air" or "feels like it is blowing you away" then it is NOT the PRESSURE but it IS A LEAK -- FIX IT.

Seriously, the pressures we use are TRIVIAL -- if you feel air it is a LEAK.

If you use a quality mask (like the P10) and YOU HEAR IT -- it is A LEAK -- fix it.

See a pattern here?

Wear the mask -- always.

Fix the leaks -- always.

You can envy my success or you can follow my example. (Do both if it works for you.)

Whatever *YOU* must do, get the treatment that *YOU* need.

Sleep well. Sweet dreams. Nighty nite.

Sweet Dreams,

HerbM
Sleep study AHI: 49 RDI: 60 -- APAP 10-11 w/AHI: 1.5 avg for 7-days (up due likely to hip replacement recovery)

"We can all breathe together or we will all suffocate alone."
(This post was last modified: 05-01-2014 10:50 PM by herbm.)
05-01-2014 10:42 PM
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CHanlon Offline

Advisory Members

Posts: 292
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Activa LT
Humidifier: ResMed Hi5
CPAP Pressure: 12 -20
CPAP Software: ResScan SleepyHead

Other Comments: Mirage Activa LT nasal mask

Sex: Male
Location: Ontario, Canada

Post: #429
RE: Your Personal CPAP Success Story - Post Here
(04-08-2014 09:20 PM)sjssf Wrote:  Greetings. I'm a new member and somewhat of a cliche. I am 54, overweight, seemed to have narcolepsy...

I hear you. Not too different from me... I'm 52 now, had the CPAP for about 4 years now.

Quote:I did all sorts of test and somehow I don't have high blood pressure. But I do have sleep apnea and was disturbed 52 times an hour. They gave me a loaner of the Resmed S9 Autoset and the first night was rough but I woke up more alert than i had in years.

My doctors hate me - none of them can figure out why I don't have high blood pressure, my cardiogram is perfect, blood sugars are fine... Heh. My GP was gleeful when he called to say I am hyperthyroid... until I said "wait, you said the TSH was 6... um... that's HYPO not HYPER... and makes perfect sense to me... look at my weight..."

1 point high. Ah well.

Same as you I started with a loaner APAP, only they tried to give me a fixed pressure CPAP after. I loathed it. Bought the S9 myself, and have never regretted it.

Quote:I started to get used to it by the second week and then I had to give it back. They gave me no help with the price so I had to buy it myself! I feel like I got away with a lot with no insurance so I'm just dealing with it.

My first night was flawless, but I'm a diver. Sept 9 hours straight, woke up feeling better then I have in 10 years, and haven't nodded off during the day since.

Quote: I also have insane cricks in my neck from either sleeping too hard or sleeping tensly trying not to knock off the mask. He couldn't care less. I told him I'd read how the statistic weren't in my favor and he said I'd get over it.

For about 6 months after I got mine, I had a sore shoulder. I sleep on my side, which is a neat trick with a nasal CPAP mask on... and it's the shoulder I sleep on that was sore. Because I stopped moving. I don't kick, wake up flailing, toss and turn... I go to sleep laying on my left side, and I wake up 8 or 9 hours later lying on my side. I don't get up 3 times a night to go to the bathroom... all of that is gone from the first night.

I taught myself to sleep on my back more... soreness went away.

Quote:Anyway, I bought a H5 to go along with the Autoset so no more nose problems. The cricks are starting to work themselves out but I sure could use a massage!

The H5 really helps. So does the climateline hose. A massage is best. :-)

Quote:The hardest part for me was relaxing because I felt i was suffocating with the mask, but now I"m getting used to breathing through my nose and it's a pleasure.

That was never an issue for me - I think it's because I'm a scuba diver, so I'm used to functioning with weird stuff on my face. The mechanics are reversed, but it's a similar feeling.

Quote:I actually am starting to enjoy the CPAP. I know it sounds crazy and from reading things here, I am one of the few lucky ones.

Not crazy. I am too. I can't imagine not using it, now, since I can still remember how I felt without it.

Quote:I feel like I'm going into a cocoon and I have a very stressful job and I try and completely relax. I'm needing much less sleep and I'm much sharper in the morning. My fantasy is that I will have more energy and can start exercising and will lose weight. I eat well but I'm too stressed and tired to exercise, especially since I hate it!

The energy will come. I've lost 60 pounds in the last year, just because I'm that much more active. YMMMV, of course, but the CPAP doesn't hurt in that department.
05-07-2014 02:47 PM
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CHanlon Offline

Advisory Members

Posts: 292
Joined: Mar 2012

Machine: ResMed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: ResMed Activa LT
Humidifier: ResMed Hi5
CPAP Pressure: 12 -20
CPAP Software: ResScan SleepyHead

Other Comments: Mirage Activa LT nasal mask

Sex: Male
Location: Ontario, Canada

Post: #430
RE: Your Personal CPAP Success Story - Post Here
(04-29-2014 12:09 PM)PsychoMike Wrote:  I am pleased to report that I have had an outstanding last 2 weeks at what I have to designate as my "sweet spot." My leaks are well controlled (extremely seldom above 20L/m), my average AHI has been 0.08 (yes, you read that right....I did a double take as well when I saw it on Sleephyhead...but I've reset my machine several times to make sure the 0.0 AHI nights were "real") and I don't think I've ever felt so good in the morning....refreshed and pretty dang energetic for on old dog Wink
After about a year on APAP I ran a 3 week string of 0.0 AHI nights... thought my machine was broken. :-)

It checked out in both Sleepyhead and the ResMed software, thought. I was actually relieved to get a 0.01 night. :-)
05-07-2014 02:55 PM
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