Your Personal CPAP Success Story - Post Here

[Gabby]

BH, I thought it was going to be something like that, oh well...
The main thing is you are feeling ok now, sleeping well and waking up feeling good, you can't ask for much more than that.
You go girl!

[BHolland]

Surprise! I found a version of SleepyHead for Mac afterall (link below.) I have MS Office for Macs on my computer and it was that installer that loaded it. Then I had to find it ....! If anybody has the same problem, I can tell you the steps I took in downloading it. Now that it's on my Mac, I will have to figure out how to use it is all.

SleepyHead-20140622-MacOSX-0.9.6-testbuild-Qt5.3.0.dmg

[BHolland]

BH, I thought it was going to be something like that, oh well...
The main thing is you are feeling ok now, sleeping well and waking up feeling good, you can't ask for much more than that.
You go girl!

Thanks Gabby. After sending that post I realized there is a SleepyHead tab at the top of the page which provides LOTS MORE information. Duh. I'll have to get a portable card reader for my Mac as it doesn't have one. No biggie.

[Salubrino]

Yes - I am a success too!

Was diagnosed april this year and got my machine in June (AHI 46,4 at the sleep study).

Usually winters have been hard for me here in grim dark Scandinavia. But even though it´s rapidly getting darker now I still feel energetic and full of power. I have had the energy to start dieting and to do some exercising again. And the current reorganization at work doesn´t bother me too much either - I feel healthy! Yes still overweight and out of shape but I feel great which is a good start that I will use to get even better.

The first month was a bit tough. Got blisters on my nose from the mirage quattro air and had problems sleeping (or more falling asleep again when waking up in the middle of the night). Also had problems with excessive yawning when first using the mask. Did some research here on the board - adjusted the lower setting on my machine to 8 and got a mirage quattro and a quattro fx instead to be able to change when needed between masks and their different headgears. The Air is probably a great mask but wasn´t for me.

This has worked pefectly - I am now 100% compliant, down to an AHI of 2,79 in September and the leak rate 95% is 8,75.

One happy CPAP:er here! Thanks a million for the advice on this board!

[retired_guy]

Good job Sal. Glad to hear you are doing so well. One thing to remember as well, since you live in "grim dark Scandinavia," have your level of vitamin D checked. I doubt you get a plethora of sunshine during those long winter months. Here in beautiful downtown Oregon USA, winters are normally just one rainy day after another. So I too know about vitamin D shortages.

[Liteceeper]

I got to this site after multiple ear & sinus infections and SHMBO complaining about snoring and me not breathing.
But like all blokes I did nothing until a sore tooth made me get a root canal treatment a couple of years ago, but the sinus problems continued and so did the snoring.
So off to an ENT doctor and scans revealed a rotten set of sinuses and a partially block nasal passage. So before an operation on these issues could proceed a sleep study was ordered which revealed sleep apnea with a AHI of 28. ENT then referred me to respiratory doctor (still waiting for appointment, Medicare public waiting lists getting longer in Oz)
Rang sleep clinic and was informed that respiratory doctor will arrange CPAP sleep study (when I eventually get a appointment) and then I would need to visit a provider for CPAP machine.
Being one to grab the bull by the horns I jumped on the internet an started researching and came across the Apneaboard, great site and a great resource, well done one & all.
Decided to start the ball rolling by purchasing my own Auto machine on WWW as aussie manufacturer & sleep clinics etc have stitched up purchase price in Australia, PR Auto as purchased cost >$2250AUS but bought from 1800CPAP for $961US inc shipping.
So started treatment on 25th Sept when the APAP arrived, ironically the same day I returned to dentist and had the root canal tooth pulled as it had split and was not saveable, in hind sight should have spent the $1300 back then on a CPAP device.
Probably not the best time to commence with sore upper jaw but what the hell, six days in now and feeling the benefits, not falling asleep in front of the TV, 100% compliant and 7.5 hours a night rested sleep replacing 8 hours of interrupted sleep and odd elbow in ribs and waking feeling tired. Usual trouble with mask fit and sore bridge of nose, leaks etc.
AHI down to 6.25 using the Auto- trial @ 4 - 20 setting for 7 days to get a idea of what to set up pressure to.
Current 7 day 90% is 8.9, AVE is 5.7 and MAX is 11.5 so will set tomorrow night to MIN 6 MAX 15.
Thanks all

[PaytonA]

Way to go! Sounds like you are headed in the right direction. Glad to hear that you are perceiving benefits already. Glad you found this site when you did. It sure made a difference to my therapy once I found this forum.

Best Regards,

PaytonA

[TorontoCPAPguy]

Well, these past few months have proven once and for all that all sleep docs do not know what they are doing nor (or) cannot invest the time and energy into resolving YOUR sleep apnea problem. Perhaps it's a simple matter of dollars and cents. I don't know. But here's the story....

My wife was diagnosed with moderate sleep apnea just 3 months ago, although that diagnosis, for whatever reason, took several months to arrive at. Quack. Quack. At a major hospital yet.

She was prescribed a ResMed S9 Elite although I pleaded for an S9 Auto APAP. "No. Don't think she needs that." I asked for a full face mask on her behalf as I KNOW (KNOW!!) she is an intermittent mouth breather due to a multitude of allergies and the occasional cold. " No, we don't think she needs a full face mask".

We got to the DME and were told that we could pay for the S9 Auto and for a FFM out of our pockets for $1,000. I knew better. The $350 they wanted to charge me for the FFM was bogus and I bought a couple of MEDIUM sized FFM's online for about $90 each (Mirage Quattro FFM in MEDIUM - as per their sizing). I also had bought a spare S9 Auto when I got mine. Total cost was about $650 and this DME (in Ontario) wanted an UPGRADE charge of more than $650. Rip-off?

Long story short. We started out by trying the S9 Elite as prescribed along with the pressures prescribed along with a nose bagprescribed. It worked like cra**p. Her AHI was in the order of 80 give or take on any given night. Some of the events were so close together they appeared to overlap!!

Enough I said. Ordered three MEDIUM sized Quattro FFM's for about $90 each and tried them. Wrong size I am afraid. They leaked intermittently all night make the efficacy of the treatment pretty much nil. Ordered a couple of SMALL sized Quattro FFM's and they fit my wife like a glove. The just arrived two days ago. I also unpacked my brand new spare S9 Auto, and set her up. Disaster, ... she did not agree with humidifier at all. Total disaster.

Last night we had the humidifier totally removed, adjust the pressure range from a low end of what the doctor prescribed for CPAP and made the upper end 20 cmH2O. The SMALL sized Quattro's fit like a glove as I say. Well, she awoke this morning feeling great and well rested. Took the chip from the back of the S9 Auto and plugged it into ResScan and went straight to the events display. And there they were. Staring me in the face. A grand total of TWO events, read as centrals (which we will figure out). Checking the other parameters recorded we take great interest in noting that the pressure started at 9 cmH2O and went up as high as about 14 cmH20 compensating for various degrees of OSA. BUT ONLY TWO EVENTS all night!! No wonder she felt great.

So, without getting into greater detail, there is our success story. I am not going to suggest what you should do when getting a prescription from your sleep doc, but take this story for what it is worth. Digest it and learn from it. I am not going to name sleep docs nor DME's out there as there are many wonderful ones. Just be sure you know what you are getting. We got the short end of the stick I think.

Our problem is solved and she had a recall appointment with the sleep doc today which we cancelled. Want to print out a month before and a month after we made the changes that we did, put them into a binder and plop them on the sleep doc's desk before he has a chance to open his yap.... you see, he is very big on himself with an ego the size of Mt. Everest. The proof is in the pudding they say and if I could go back around again I think I would be a sleep doc. More learned and with a bit more concern for my patients rather than the almight buck. In and out. In and out. Dollars churning.

It is a mean and cruel world out there. DON'T be afraid to make adjustments as you see fit. DO learn how to use ResScan or SleepyHead or some other diagnostic software and interpret it. Get a feel for what you need and DO IT. No, let me take that back. I am not for one minute suggesting that you self-medicate. That would be criminal. I am suggesting that you educate yourself. Period.

From AHI=80+ to two events of unknown origin. If you need clinician manuals they are available from various sources. DO IT. You will not regret it. Remember this. Sleep apnea begets other afflictions including arrhythmias, heart disease, obesity, diabetes, high blood pressure, strokes, burst aneurisms and Lord knows what else. Do you wake up gasping for air or in a cold sweat? Do you snore when you sleep? Time to get with the program. Oh... and one other thing. Barring other afflictions (I broke ribs and damaged my spine in an accident in May and NEVER get a good night of sleep now) you will feel one thousand times better. It does not happen overnight. Sometimes just getting your mask to fit right and getting a feel for it can take weeks or months. Stick with it. The results are well worth the effort. And remember this. You have a load of friends on this forum that are here to help you. We've been here and done that and have the T shirt. I, personally, will be here as much as possible, manuals in hand, experience ON hand, to pay back what I have been taught. What has been shared with me. One thing though, and that is simply this. You CANNOT be bashful about your circumstances. Whatsoever! That just might negate a wee piece of advice that would make all the difference in the world.
Regards,
TorontoCPAPguy
Toronto and points south (transplanted Yankee)

[AshSF]

I have been a loud snorer for as long as I can remember. I am in good health, fit and have a good blood pressure. I check it every week. I always believed I don't have apnea since the first effect is raised blood pressure. I also got my blood work done every year to see my numbers for heart, liver and kidneys. They were all good.

On a whim to get more data on my health, I got a home sleep study done. The results were shocking (AHI of 77, mostly obstructive, Desat all the way to 77%).

I bought a PRS1 560TS immediately and got to work. I have been using the machine religiously for the last 4 weeks. And the results are amazing. Now when I look back, I think I have not slept properly in the last 20 years. I can focus better, have better memory and don't get agitated too much or too often. And my coffee consumption is way down.

I use sleepyhead every morning to see my results. My AHI is down to a range of 1.5 - 0.5 every night. I also got leaks under control by cutting a new cloth liner from a old t-shirt every day and using it with my FFM. My leaks on sleepyhead have not exceeded 3L/min ever, with the cloth liner.

I think what helped me to get used to therapy so soon was that I initially made up my mind that CPAP is THE ONLY OPTION for me and I have to make it work. This made sure I went past Denial phase immediately and started working on making the therapy work. Having the data on sleepyhead only reinforces the good habit.

[toro33]

I’ve had Sleep Apnea for nearly 20 years. I read all I could find initially about ways to minimize the effects and went about seven years without help. The non breathing intervals finally became so bad that it scared my wife so at age 70 I had a sleep study. My AHI was 71 and the great majority were CA.

I had a huge air swallowing problem with my first Cpap machine. Again lots of reading and was able to convince my doctor to let me try a BiPap machine. That did lessen the aerophagia some but I’ve had to deal with that problem throughout my treatment. My first big noisy Respironics BiPap machine only lasted a year or so. My next was the M model, much smaller, quieter and compliance was better. The humidifier didn’t heat when running on battery power, so the unit had a very low power usage while camping. It would run all night on a small motorcycle battery.

Three plus years ago I was given my current machine. I love the heated moist air since I have sinus issues. I gave up motorcycle camping at age 80 and with a 2 battery setup in my 4Runner I can have full heat and humidity all night!

However, I had serious compliance issues with large numbers of events occurring while I was still awake. My Dr. said it was probably my slow respiratory rate (12.5), so I had to consciously speed up my breathing cycle to get back near compliance numbers. I swam competitively through college, have always been in shape and currently ride my mountain bike 4-5 hours a week. I breathe with long slow breaths! Additionally, I was taught to take even longer deep breaths with a relaxation technique to help get to sleep during periods of extreme stress. I had continued using the technique as it is a great way to just unwind while waiting for sleep.

Two months ago I began another big research effort (how I found this site) and discovered how poorly I’ve been served by my sleep doctor and health care folks. I discovered Trigger high and Cycle very low gave me back my long breaths and dropped me from AHI 5+ to AHI 1.5. I’ve also been able to drop my pressures from 12 and 8, to 10 and 6, and currently 9 and 5 with no change in the AHI 1.5. It has also lessened the aerophagia a bit. The other thing I’ve discovered, all of my aerophagia occurs when I roll over on to my side. Next thing I’m going to try is the use of a couple bed position wedges to keep me from rolling over. Will let you know how that works.

So I’ve taken over complete control of my apnea management, and that is wrong. I believe we need to be well informed participants in our care, but I also believe the old saw, “Only a fool has himself for a doctor”. I want one who is smarter than me and cares more about getting it right than just the magic number 5. The search is on.