Your Personal CPAP Success Story - Post Here

[Gabby]

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)

TorontoCPAPguy, thanks for your story and your huge dose of encouragement.
Encouragement never goes astray.
All the best to you and your wife.

[Sleepster]

I'm three years into using my CPAP machine and I love it. The prior decades of untreated OSA have messed up my relationship with sleep. Sleep is supposed to be a welcome restorative part of everyday life, but for me it had become torture.

It has taken me a long time to get used to sleeping again. The last three years have been a process of gradual slow improvement. I no longer need my night guard. I no longer need my amitriptyline to sleep and fend off chronic headaches. I have a lot less stress in my life. The importance of working to make a living had become blown way out of proportion in my mind set. Everything was so much harder. Now most things are so much easier.

If you have sleep apnea, get a CPAP machine. If you have a CPAP machine, use it. Even if you don't notice any improvement at first just keep using it every time you sleep, all the time you are sleeping. Without it you will continue to live a miserable sleep-deprived life and die early of a heart attack or stroke. You can't sleep if your airway collapses. You need a CPAP machine to keep it open.

[lab rat]

When I was faced with using a cpap machine in 1996 it was a no brainer. Use it or go to an early grave.

[photocoach]

I've been using Apnea machines since my first sleep study in 1988. Before machines it was noted that I could go to sleep immediately anytime, in any position. Even after machines I have been notably tired and sleeping long hours.

Since moving from Texas to near Berkeley I have been working more directly with an MD and sleep clinic. My AHI's have been characteristically high, 30's to 80's. My last machine was supposed to improve things, ResMed S9 VPAP ST, but my AHI's were still often above 30.

I trained with an oral myologist, who help especially with Buteyko breathing, and got a Somnodent mouthpiece fitted. The mouthpiece helped but also hurts. The myologist helped with mouth breathing, and I still tape my mouth at night with two inch medical paper tape as she recommended.

An ASV was next recommendation but Medicare would not pay because it has the same code as the S9. I am retired on modest income -- my MD's assistant found a used machine and I got a Resperonics ASV 960P for $700 cash.

My AHI's are all hypopneas and the numbers vary a lot. Last month was less than one per night to 9.34 with a 3.62 average. The month before was 3.85 low to 18.48 with a 9.10 average (thank you Sleepyhead.) I don't know why the average is dropping but I am greatly pleased. And I don't know why I still do well with 9 hours at night and a one hour nap. I use the Mirage Quattro full face mask and tape my mouth. I am 82 with an estimated age equivalent of 69. The Apnea Board is a great place!

[Tez62]

Well done photocoach and thanks for your story, can I ask why you are still taping your mouth with a FFM, it's up to you and if it works, stick with it but the idea of a FFM mask is that you can breathe through your mouth if you are a mouth breather, just curious. Most people that tape there mouths are mouth breathers that use a nasal mask or nasal pillows.

[Gabby]

Photo coach, I enjoyed your story and think you are doing a great job.
I also wondered why you are still taping your mouth while wearing a FFM?
I suppose we all do what we have to to get by.
Keep up the good work!

[Gabby]

Photocoach, I enjoyed your story and think you are doing a great job.
I also wondered why you are still taping your mouth while wearing a FFM?
I suppose we all do what we have to to get by.
Keep up the good work!

[Sleepster]

I trained with an oral myologist, who help especially with Buteyko breathing, and got a Somnodent mouthpiece fitted. The mouthpiece helped but also hurts. The myologist helped with mouth breathing, and I still tape my mouth at night with two inch medical paper tape as she recommended.

Why would you use both a mouthpiece and tape?

[Shamus54]

Started CPAP in the Fall of 2009 after keeping the wife awake for years with my snoring... Diagnosed with severe apnea and pressure set at 16 on an S8 Elite II. Saw a marked improvement in my sleeping almost immediately, (although the mask took a week to get used to). Bought a back up machine, (RemStar Pro), about six months later, and have swapped them out for use every few months ever since. 100% compliance for the past 5 years! I have adjusted pretty well to nose breathing after having surgery four years ago to correct partial blockages, but I still do better with the full face mask as opposed to the nasal or pillow type. Overall I feel much better about sleeping than I have in the past fifteen years or so! All that said, I still fall asleep in the afternoon while watching FOX news channel... ;-)

[gouldcat]

I was diagnosed in 2012 and tried CPAP for 6 months with no success. I put the machine in the closet and left it there for over a year. In the meantime I was fitted for an oral appliance. This gave minimal relief from the symptoms and hurt my jaw. So I revisited the machine and realized this was a matter of conditioning. In time I was able to sleep and sleep well-like seven hours. Now you could not rip the machine away from me. Hang in there, it is a cumbersome treatment but a very good treatment. When I sleep I appreciate the pressure and find the choking sensation totally gone..