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Your Personal CPAP Success Story - Post Here
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Crowfoot Offline

New Members

Posts: 2
Joined: Aug 2013

Machine: Resmed S9 Autoset
Mask Type: Nasal mask
Mask Make & Model: Resmed FX Nano
Humidifier: Resmed H5i
CPAP Pressure: 6 - 20 cm H2O
CPAP Software: ResScan SleepyHead

Other Comments: Have an Inflammatory Myopathy called Polymyositis

Sex: Male
Location: Sydney, Australia

Post: #281
RE: Your Personal CPAP Success Story - Post Here
Having been a member for a month I admit to skulking about in the shadows reading and digesting many of the posts. This is not exactly a success story but one relating to greater understanding of how one problem can exacerbate another.
I have an eleven year unwilling association with a rare and incurable muscle disease called Polymyositis -it means inflammation of many muscles- and has wide reaching effects in one's body. Among the horrors is dysphagia which causes swallowing difficulties and even unpleasant 'choking on one's food' events. The overall problems of my long-time friend will be of little interest here except to state that because the disease affects the skeletal muscle system it has the potential to weaken one's respiratory muscles. Two and a half years ago my specialist doctor sent me for a sleep study but before it could be done I suffered a massive heart attack. I did not recognize it as such because of the muscle pain, muscle cramps and spasms Polymyositis brings me. In fact the pain was concentrated in my shoulders, arms, hands and back down to my hips. Five days after the experience I contacted my doctor and that resulted in my being checked out via ECG etc. I had three blocked arteries all in the high 90% range. I did not snuff it on the bedroom floor because I believe "Old Nick" had a full complement of stokers at the time so I was granted a reprieve by way of triple by-pass surgery. In consequence of the disease and my Immuno-suppressant medication it took me two years to recover from the ordeal.
I finally had my sleep study several weeks ago followed by a titration session. This resulted in the purchase of S9 Autoset and H5i plus a Quattro Air mask. Of course, like everyone else, I had mask leakage problems. Being formerly an process engineer and a scanning electron microscopist in materials analysis I unashamedly used the experiences and wisdom of participants of this forum to try to figure out why the mask would suddenly go awry after about an hour and a half in use.
I am a side sleeper but because of my muscle disease will often move from side to side with a rest on my back and that was when the leakage became bad. I began to think about the innards of my short thick neck and pondered the dysphagia problem. Without a pillow, sleeping on my back straightened my neck and obviously eased the airway blockage problem while sleeping on my side with just the end of the pillow under my head as a packer keeps the neck straighter too.
So, I can now concentrate on the more interesting aspects of my sleep apnoea. Much of my initial solution is in consequence of contributions I have read here and for that I am most appreciative.
09-07-2013 08:24 PM
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Tez62 Offline

Monitors

Posts: 837
Joined: Feb 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Resmed Mirage Quattro
Humidifier: Resmed
CPAP Pressure: 5-15
CPAP Software: SleepyHead

Other Comments:

Sex: Male
Location: Melbourne, Australia

Post: #282
RE: Your Personal CPAP Success Story - Post Here
Welcome Crowfoot, I'm due for a change of mask and are looking at the Quattro Air after 2 years with the Mirage Quattro, it did take me about 12 months to get used to it and occassionally still get annoying leaks. It should be due in Australia now so will look into it.
09-08-2013 03:57 AM
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me50 Offline

Advisory Members

Posts: 2,559
Joined: Aug 2013

Machine: resmed S9 VPAP Auto
Mask Type: Nasal mask
Mask Make & Model: Wisp and Silicone Head gear
Humidifier: resmed H5i
CPAP Pressure: 18/8
CPAP Software: SleepyHead

Other Comments:

Sex: Undisclosed
Location: USA

Post: #283
RE: Your Personal CPAP Success Story - Post Here [copied from old forum]
The wrong mask size messed up everything but I had no idea it was the wrong size. If someone had told me sooner I wouldn't have suffered like this for a whole year. I just didn't know any better. No mask should cause pain or discomfort. It shouldn't leak if its the right size and the right style mask for your face. There are several types and sizes to choose from but I had no clue!

I had the same issue with mask size. I was given a medium mask and was miserable with leaks, tightened down so tight that I had deep markings from the mask on my face. I did not have sores b/c I wouldn't tighten it anymore.

So back to the DME to get the mask checked. He then gave me a large!! I asked him why he wouldn't try me on the small mask and he said b/c they don't carry them in stock (so order one!!). I am thinking what the h*%l? I have major leaks with a medium mask and you are giving me a large one now? Well, same issues only worse with the large one. So, I changed DME's.

They put me back on the medium mask and I was still having issues. It appears that most of them go by their little device they use to measure with (the medium and large masks went down to the bottom of my chin). I finally begged them to give me a small mask/headgear to try and see if that made a difference and that if it didn't, I would have to try for a different mask style. So, I got the small full face mask and I don't know what my leak rate was b/c I just got the software from ResScan and Sleepyhead downloaded recently and I have not mastered the color coded graphs/charts. But, as far as how I feel, I think the leaks are a whole lot less now and I sure don't get awakened due to the leaks.

I would say persistence, persistence, persistence!! It is your life and the DME isn't dealing with and going through what you are going through and we have to make them listen to us!! Wish I would have forced the issue sooner but I had a child pass away and a brother pass away 3 weeks later so I was on the back burner with my needs!!
09-08-2013 04:11 PM
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shifco Offline

Members

Posts: 10
Joined: Aug 2013

Machine: Philips Respironics REMstar Auto A-Flex System One
Mask Type: Full face mask
Mask Make & Model: unsure
Humidifier: yes
CPAP Pressure: 4
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location:

Post: #284
RE: Your Personal CPAP Success Story - Post Here
(09-06-2013 02:24 PM)NoahsMom Wrote:  ...My son has sleep apnea! Last week, when I was at the end of my rope , I called his psychiatrist's office begging for someone to please help my son. I insisted on a sleep study. He had that last night. Within the first 15 minutes, the technicians came to get me. They praised me for putting all the symptoms together and getting him help. At one point, his heart rate reached 115 and his oxygen level went down to 82%. His brain worked overtime all night just to help him breathing. Watching the print out and listening to the technicians explain that basically my son's brain was struggling every night just to keep his body alive for who knows how long brought me to tears. All this time, he/we were told he has ADD, he has behavioral problems...It makes me very angry and sad that he has struggled to try to be what or how everyone told him/us how he should be and all along he was trying ,literally, just to stay alive...

NoahsMom... Great to read your story... great to hear you figured it out. You're a great mom and are Noah's best advocate. If there is anything I have learned from my daughter's 1.5 year struggle, and still ongoing struggle, is that YOU must be the advocate... YOU must be the one asking the questions, YOU must be the one trying to find all the answers.. The American health system (and this is just pure speculation on your location) is just too messed up to allow the system to put two and two together and find the real problem and the real solution. ADD/ADHD seems to be just a shotgun solution these days. You found your son's answer and likely made his mental health and physical health many many many multiples better for him.. hopefully both very soon and for later in life. Congrats on being a great mom.

(09-06-2013 02:24 PM)NoahsMom Wrote:  I also hope now that he will be receiving appropriate treatment for sleep apnea that he may finally have some peace, as well as a good night's sleep.

You've found the answer. Now keep going and find the best treatment for Noah so that he can succeed from here on out. Don't let down. Don't stop asking questions, seeking options, seeking information. Best of luck to you and Noah!
09-09-2013 07:26 PM
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dugie Offline

New Members

Posts: 1
Joined: Feb 2013

Machine: Resmed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: Quattro FX
Humidifier: none
CPAP Pressure: unsure
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #285
RE: Your Personal CPAP Success Story - Post Here
I've been on CPAP therapy since April this year using the resmed s9 autoset, had quite a difficult time for the first 2 months trying to get used you'll, however now I wouldn't be without it, I feel so much better, more energy, more concentration and more importantly have had my driving license back..

Over the last month or so I have been waking dehydrated with a tongue like a dried frog, it has been literally stuck to the roof of my mouth, I have been given a humidifier which I'm now trying to set right but seem to be struggling at moment even with humidity set to max I still suffer same problem,but I'm not going to give up, I will get it right..one day..

For anyone else just starting CPAP therapy my advice would be to keep persevering, once you climb the mountain of annoyance, frustration and anger you'll reach the peaceful and restful plateau Sleep-well
09-14-2013 04:43 AM
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samlliw Offline

New Members

Posts: 2
Joined: Sep 2013

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model: ResMed
Humidifier: ResMed
CPAP Pressure: 12
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #286
RE: Your Personal CPAP Success Story - Post Here
Well, I can't as yet give a "success story". I'm not new to CPAP, I had one about 12 years ago, and after a year of trying to get used to it, never did, and I threw it away. The biggest issue was the constant pressure.
Recently I had to have a heart pace maker inserted, and during the procedure had several episodes of apneas. Enough that my cardiologist suggested I have a sleep study done as this could be a major cause of my heart problem. So I made the appointment. After the study they determined I had 30 some incidents throughout the night, actually stopping breathing for almost 2 minutes a couple of times. During my first meeting with the doctor, he suggested CPAP. I told him of my first experience with it, and explained that I couldn't get used to it because of the constant pressure and not being able to exhale. So right off the bat, he gave me a constant pressure machine. I tried it for a few (sleepless) nights and took it back to the clinic. Then they gave me the ResMed S9 Elite to try. It works better, but after a couple of months now, I am still not able to get a good night's sleep. I have the ramp set at 30 minutes which helps me fall asleep. But after about a couple of hours, the mask starts to leak. It literally tries to blow off my face. The mask is a Quattro Air I believe. No matter how I adjust it, it still leaks. So I wind up taking it off so I can at least get a little sleep. Last night I reduced the pressure from 12-18 down to 10-12 and that helped some.
The other problem I have is dry mouth. The therapist suggested raising the humidity level incrementally up to the max. Once I reached the max, it didn't help the dry mouth much and the mask had water in it when I woke up. So I had to set it back. Reducing the pressure seemed to help the dry mouth more than the humidifier did.
So far I have accomplished scaring the heck out of the dog,and keeping my wife awake with the face farts. I have yet to experience a good night's sleep with this thing. But I intend to keep trying.
09-18-2013 01:14 PM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,995
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: #287
RE: Your Personal CPAP Success Story - Post Here
Getting a good fitting mask is the hurdle you must clear. There are a large variety of them and you need keep trying different ones until you find one that you can tolerate. Why can't you wear a nasal mask? They are less prone to leaking than full face masks. Also, if a full face mask is a must, try a hybrid mask.

What pressure does your prescription call for? You really need to be checking your AHI and your leak rates if you're going to be adjusting your pressure.

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.
09-18-2013 07:03 PM
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samlliw Offline

New Members

Posts: 2
Joined: Sep 2013

Machine: ResMed S9
Mask Type: Full face mask
Mask Make & Model: ResMed
Humidifier: ResMed
CPAP Pressure: 12
CPAP Software: Not using software

Other Comments:

Sex: Male
Location:

Post: #288
RE: Your Personal CPAP Success Story - Post Here
(09-18-2013 07:03 PM)Sleepster Wrote:  Getting a good fitting mask is the hurdle you must clear. There are a large variety of them and you need keep trying different ones until you find one that you can tolerate. Why can't you wear a nasal mask? They are less prone to leaking than full face masks. Also, if a full face mask is a must, try a hybrid mask.

What pressure does your prescription call for? You really need to be checking your AHI and your leak rates if you're going to be adjusting your pressure.
I thought my prescription pressure was 12, but the machine was set for between 12 and 18. So I'm not sure. I do know the mask stayed in place with the pressure reduced. I set it back to 12-18 last night.
I have allergy issues and can't always breathe through my nose. Therefore the full face mask. What is a "hybrid"?
09-19-2013 10:06 AM
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Raejean French Offline

New Members

Posts: 2
Joined: Oct 2013

Machine: ResMed S9 Elite
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX for Her
Humidifier: ResMed H5i
CPAP Pressure: 12
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Female
Location:

Post: #289
RE: Your Personal CPAP Success Story - Post Here
I have reached my six-month benchmark with almost too many ups and downs to recount.

I began with a full-face mask that morphed into a a nasal mask to a mini nasal mask (Wisp, Nano) to a nasal pillow. I had leaks and facial sores and dents and slipping liners and miserable white nights trying to sleep at all with what felt like a gravy boat tied to my face.

I initially had vivid, horrible nightmares as I began to make up for all the REM sleep I'd lost. Some days I felt I'd regained 20 I.Q. points. Others, I mightn't have tried at all. My sleep has been broken as I awoke to masks half off my face and blowing air into rheumy eyes.

I've experienced nosebleeds as I adjusted to dryness and the Flonase prescription given me by the ENT that probably exacerbated the problem.

But finally, it has all seemed to fall into place, giving me some of the best sleep I've had in many years, more energy, mental acuity, and lifting of a depression that I'd almost forgotten I had because I'd just lived with it so long. Best of all, I had an increase of 15 points in my cardiac ejection fraction after only one month of CPAP therapy, which means I am no longer a candidate for an implanted defibrillator, and the cardiologist says I should live out a normal lifespan.

I am now making some minor adjustments to the ramp and pressure settings programmed by the DME (the pulmonologist approves), and I expect to have even more improvement of my heart function at my next visit.
10-02-2013 10:45 PM
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Sleepster Offline
Wiki Editor
Moderators

Posts: 4,995
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: #290
RE: Your Personal CPAP Success Story - Post Here
Congratulation Raejean. Your perseverance could be an inspiration to those having trouble acclimating to CPAP therapy. You remind us that CPAP therapy really is a fight for our lives. And it's a fight that can be won.

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.
10-03-2013 07:35 PM
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