Your Personal CPAP Success Story - Post Here

[Terelou]

Well, I’m not going to make this a long story of success even though it began in 1994!
It’s also filled with the typical rhetoric like me saying, “I’d know if I quit breathing, even if I was sleeping! You don’t think I’d have woke up, if I quit breathing?”
Nevertheless, I went in to have my sleep study just like many of you—and just like all of you, I found out that I did have sleep apnea. However, I didn’t just have sleep apnea, as it turned out I quit breathing 89 times per hour ‘on the average’!
I say, “On the average.”—because they pulled the plug on the standard 4 hour apnea test in 52 minutes, because the technicians got panicky at the prospect of having a patient die in their bed.
See, the 77 times in 52 minutes that I quit breathing, even if several of the incidents were only for a few seconds, were only part of it—but that coupled the fact that my oxygen level went down to 81 for extended periods of time. Nothing that I can quote but I definitely know it made them very uncomfortable!
So, they put me on the CPAP, but as if turned out, it had to be a BiPAP because my levels started out fairly high with difficulty on the exhale.
Then I spent the rest the rest of the night on the BiPAP and came out of that room feeling like a teenager again!
That was a major success. That was a major accomplishment, because even though I was only 38 years old, I was an old 38 years old! I had a bad back injury years before and yet I worked very hard in grounds maintenance all my life! On our 7.25 acres of land my wife I had built a little self-contained farm, and that included building a, 48’ X 36’ garage work-shop ourselves! So, I was tired all the time, I hurt all the time, and suddenly with the use of this machine—this BiPAP—for the first time in at least 15 years I felt great!
So the only thing I can say to ALL OF YOU NON-CPAP users out there is—If you have someone in your life that says, you quit breathing when you sleep (OH AND THAT’S WHETHER YOU SNORE OR NOT because I didn’t snore!)—LISTEN TO THAT PERSON AND GO GET TESTED FOR SLEEP APNEA!!
Now it may have been a little easier for me to get used to using a mask to sleep with because I had been a licensed pesticide applicator almost all my life. So, I wore a mask all day, then I just wore one all day and all night too!
It was worth it for the difference in a much better pain level than I had before.

[kldymond81]

Not a success story yet, but getting closer.

I was diagnosed just over 2 years ago. When I first started using the machine I had a heck of a time getting used to it. I found the nasal mask easiest as I usually breath through my nose. I have recently switched to a full face mask as I believe I may be breathing through my mouth more than I originally thought. I actually found this site when searching for the best mask. I have been using the Resmed Air fullface. My leakage has been over 20L, so I have ordered the Resmed Mirage Quattro, and it should be arriving shortly.

After reading some of the posts on here, I downloaded sleepyhead. There I discovered that my treatment has been horrible. I have to have my sd card downloaded for my DOT card, so it was quite surprising to see the results I did. An AHI of less than 100 was rare. I plugged my machine in and have used it the way it came from day one. I trusted that these doctors knew what thay we're doing. I couldn't have been more wrong. As I looked through my settings I noticed they had it set to CPAP mode with a pressure of 10, and ERP off. I have it set to APAP now with a max of 14, ERP of 3, and auto humidity. It's been ten days and the highest AHI I've had was .45, and my nose was clogged that night. Most have been around .06 to .08. Mind you this is all the while having a leakage of over 20L/min. I do feel better, but I am still in the fog and have room for improvement

[Timur]

My first post here on this forum and it is to share my CPAP "success" story.

Been using CPAP now for a few months and I've steadily seen an improvement in subtle ways, and not so subtle!

The subtle improvement is that I am falling asleep much faster than before. Dreams are far less fraught with danger, I've always had very good dream recall and my dreams were getting less and less pleasant over the past year. Now I sometimes actually laugh in my dreams!

More dramatically my heart rate is much improved. From being in the high 70s to the low to mid 60s.

I'm less anxious than I was prior to CPAP.

My PLMs have disappeared completely.

My AHI is now around 2. (mostly clear airway events and only the occasional hypopnea)

A second overnight sleep study in my local hospital recently indicated that my OSA had moved from being in the moderate range to the mild range (maybe due to weight loss or possibly just an odd night!) and I was given the option of not using CPAP.

But I would simply never go back to sleeping without CPAP again. In fact I think CPAP should be optional for everyone over 50, because I suspect most folks develop SDB as we get older.

I wouldn't be without my "best friend" at night.

[MitchS]

Hello Timur!

Congratulations on the success of your treatment. It looks like you have things well in hand. Your good attitude toward the treatment has a great deal to do with your success. Keep up the good work.

Sleep well.

[icyura10]

First, let me apologize, I didn't mean to write war and piece, but I put the contacts on my fingers and they could see the keys on the keyboard... that will teach me to let my eyes see what they are typing!

So go get a cup of coffee, and have a read....

Everyone who's ever had the misfortune to be around me when I slept would tell you the roof would rise and fall with my snoring, windows would break, doors would open and slam shut, curtains would flutter like a flag at full staff because of a strong wind.

I've always (even as a child) only slept 3-5 hours a night at most. All my life, I'd get a bronchial infection that would turn to pneumonia at least twice a year.

In September of 2015, I started not feeling well. And it continually got worse. In October I developed a bronchial infection (nothing new for me) so I went to Doc-In-A-Box (Urgent Care, I didn't have a primary Dr.) I requested they give me a high powered steroid inhaler and my bronchitis would likely clear up almost overnight (it's the way it's always worked for me) instead of turning to pneumonia.

The PA didn't like me asking for what I knew worked so they prescribed albuterol which didn't do jack. The following week, I went back, and now they gave me a steroid inhaler, a little late as I now had pneumonia. To this PA's credit, they told me about a Dr.s office right behind their office that was accepting new patients. So I strolled over and made an appointment for the first available.

I was scheduled to be seen as a 1st time patient (15 mins) and I was in this guy's exam room for 120 mins. I thought he was going to have a coronary when he started to examine me.

He was stunned that my BP (110/62), and blood work and everything other than my pulmonary system were in really good condition. This Dr prescribed a stronger steroid inhaler. Then I took 3 weeks of vacation around Thanksgiving, went to work for one week, then went on 4 weeks of vacation. I was out of state and found myself seeing a Dr out of state 3 times a week for 4 weeks and this Dr. was about 30 seconds from putting me into a hospital instead of letting me fly home. This temp. Dr. called my Primary care and explained what he'd been seeing me for, sent me home with films and other stuff.

I got home and my primary care took control. My Primary was concerned I had a PE, was threatening to put me into the hospital to be baby sat until they could figure out what was going on with me (oh joy) Instead, my Dr. sent me for VQ scan, Cardiac MRI, CTSCAN of my lungs and a PFT and got all of this done inside of 2 weeks. I don't know how this Dr. got it all done that quick but they did. For example, for my Cardiac MRI they opened a slot for me at 06:30 AM (not in the normal scheduling), something similar for my VQ scan. PFT revealed lots of things, but the big thing was my max TLC was about 2.1 L (I'm a 6'2 Caucasian and my TLC should be closer to 8 L). And my FEV's indicated COPD (not unusual for those with chronic bronchial infections all their lives.) I should note, that since October of 2015, my ability to sustain a walk has decreased. My maximum bipedal distance is now about 1000 feet so they've given me a vehicle disability placard that I can display in whatever vehicle I'm in.

My pulmonologist (don't confuse my pulmonologist with my sleep Dr who's also a pulmonologist but all they do these days is sleep) suggested I get enrolled into a Pulmonary Rehab course. So I got tossed into that for 4 hours a day for 4 weeks. At a cost of almost $40,000 there was no measurable difference from my measurements before the Pulmonary Rehab to the the results measured at the end of the Pulmonary Rehab.

So I was sitting in my physicians office and a med student came along shadowing them. Somewhere along the line, my Dr. asked the student if they had any questions / comments. This student (who's working to be a psychiatrist) asked if I'd had a Sleep Study for Apnea. Then there was a short discussion about a Pulmonary transplant... Oh Joy... let's hope that's not in the mix too!

Ok.. so I got queued for a sleep study inside of a week. Had the sleep study and got the results. Sleep study revealed an AHI of (ready for this) 127.3 an O2 level of 62% with notations of me having cyanosis Ok.. so as they put it to me, I was awake for some 25-30 seconds a minute on average, never ever got into rem. Sleep study for me ended after 4 hrs 10 mins (I couldn't sleep any more). Sleep Dr (a pulmonologist and a pulmonary surgeon that's now specialized in sleep study) had a long conversation with my primary. No one could figure out how I functioned in life, how I could work or how I could drive let alone concentrate. But, things were changing for me now and I am hardly functional.

Put me onto a CPAP; constant pressure of 18 cmH20... Went back to primary a week later and didn't feel any better.. and we couldn't figure it out. Suspected it might be the mask that was causing me problems as I mentioned I would awake because of air getting into my eyes from the seal on the bridge of the nose. One week later changed from nasal mask to Pillows (P 10's). Asked DME if they had software I could get to see what my machine was recording because the website was reporting good success for me (except for leaks) and they told me I wouldn't understand it. AHHHHH!!!!! Where's my GUN!!!

Made an appointment for the following week with my Primary. Didn't notice any difference after the mask -> pillow's change. Did some digging around on the network and found SleepyHead software. Installed it, and low and behold, I could now see what was going on. While I was getting 6-14 hr's sleep / 24 hr period, it was unusually fractured. 30 mins, 45 mins, 1-2 hrs, sometimes 3 hrs, rarely 4 hrs and never more at contiguous block. But, my AHI's were almost 0 so the Insurance company was happy and not about to allow my CPAP to be converted. Took Pictures of the data on my card and showed them to my Primary and his answer was, "your going back to sleep study."

So, now I'm' back at the sleep Dr's office, (first time I've actually met this guy) and after the normal introductions, he starts wandering around in my medical record. Then I hear him say, "Oh.. I remember you.. your the one who turns blue when you sleep!" I retort, "Yup, I'm Poppa Smurf!"

Then a couple hrs after my appt with the Sleep Dr., he calls me up and says, "I think you've got something known as 'Diaphragmatic Paralysis'" He explains it's usually caused by some "traumatic" event to the chest. Auto accident, surgery, being speared by a football helmet in football... that kind of stuff. The bottom line is the diaphragm only works partially, usually because of something kind of like a "Pinched Nerve" and he's going to talk to a "Pulmonary Surgeon" to get his thoughts to see if I'm a good candidate for "Diaphragmatic Nerve Repair."
Haven't heard back on this yet, it's still in the works but it wont likely resolve my sleep apnea.

He calls in his guy to pull the data from my CPAP card, get's it in hard copy and about has a fit. Sent orders to the DME to get me a ResMed AirCurve 10 (Vauto) set at IPAP - 18 and EPAP at 12. Insurance co, balked and sleep dr got back involved and changed my mask from the P 10's to a Phillips DreamWear Under the nose pillow.

So I've had this new device since Friday (that's 2 days ago). I'm still taking my naps anytime after 10 AM and I usually seep for between 2-4 hrs, then I usually crash any time after 8 PM.

I'm feeling better, but my sleep pattern is still fractured but it's no longer less than about 2 hrs at a shot (unless my phone goes off and it goes off all hours of the day and night), according to both SleepMaster and ResScan... Thank goodnes for this site and sleepyhead, FlashPap and having the ResScan software!

Now I'm just waiting out a month or two so I can amass enough data so I can get a good picture of what's going on so I can salt and pepper the parameters in the VAUTO so I'm doing better. I get to see the Sleep Dr. again in October...

This has been one very expensive year medically ... in a lot of ways.

BTW, I'm reading everything I can get my hands on about pulmonary systems so I understand..

I've done some searching around here and haven't found the definitions to some of the terms presented in SleepyHead or ResScan so it's difficult to ascertain what's being presented.

Here's a couple of links that others might find interesting and useful.. I'm trying to take a crash course in pulmonary systems so I can understand everything that's coming my way like a freight train.

A Primer on Reading Pulmonary Function Tests
by Joshua Benditt, MD

http://courses.washington.edu/med610/pft....html#fig2


Re: Pulmonary Transplants there's the following:


SIZE MATTERS: IT'S ALL ABOUT HEIGHT, SEX AND RACE!
Thomas M Egan, MD, MSC
Professor of Surgery
University of North Carolina, Chapel Hill

http://www.ishlt.org/ContentDocuments/20...Links.html

[2old2work]

The simple answer - I'm alive today because Sleep Apnea was discovered and treatment created.
I was tired, all the time, from age 14. Siblings complained about my snorting when I was asleep. I used stubborness and anger to fight the fatigue for years. The blackouts started in the 80s. By the 90s they lasted for hours instead of minutes. Docs called it work related burnout. I collapsed in 2001. They figured it was heart disease because my bp was way up. In recovery from a heart cath I terrified the nurse because every time I went to sleep my heart flat lined for 8-10 seconda and my oxygen level dropped to 73%. The good news is I got my first sleep study and machine in 2001. I'm alive because of my breathing machine. I've been told by three specialists that without it I won't last 90 days. I will be dealing with the heart and brain damage for the rest of my life but that is small stuff compared to not being alive. Thankful - OH YES.
I've sent emails about sleep apnea to every friend and relative. I tell my story to anyone who talks about being tired. So far I've had three family members tested and they all have machines. Yes, it can be genetic.
I'm not on the internet much (I was born before homes had television), but I think it is so important for all of you with sleep apnea to spread the word. Good luck to all of us.

[FFOGHORN]

I was diagnosed with severe partial obstructive apnea 13 years ago when I was 40. I probably had one of the angriest most negative attitudes of anyone on this forum. I smashed my first machine to bits with a doorstop a couple of months into treatment. I hated my machine, my mask, my doctor and the universe. But, gradually things changed...

I worked hard to locate a doctor who wouldn't treat me like a cash cow - and would listen! She gave my case some thought and suggested that I might be a mouth breather, in which case my nasal pillows were a waste of plastic. She switched me to a full-face mask and the first night I slept 14 blissful hours. Huh. She also switched me to a BPAP which just seemed to work for me. It was warm, quiet and gentle and I didn't feel like I was struggling to exhale against a hurricane. I also took a little more control of my own treatment and secured some good software to tell me exactly what was going on each night; this, of course, was after I secured my first data-capable machine. The last hurdle was mask leak. The Mirage Quattro along with a t-shaped pillow was a game-changer. Now, going to bed is as easy as it was when I was a kid. I can put on my mask in the dark. No thought or anxiety. Just sleep.

The technology today is SO much better than it was 13 years ago. I feel very happy for people today, even though I know it can still be daunting at the beginning. Of course, everything seems daunting when your tired. You just have to steady yourself and tick the boxes - which this forum is awesome at helping you do.

[kwhenrykerr]

1. How is CPAP therapy making a positive difference in your life? What impact has it made upon your health & happiness?


2. Have you had any problems with CPAP that you solved with a positive outcome? If so, what did you do to solve the problem?

CPAP for me started with a used machine that I do not know how to work other than plug it in and turn it on. I felt improvement the first night. Without taking that first step I would not be writing this now, I was headed for the grave and it was a lousy life.

I have improved lung function, more desire to keep going. I know it is only a patch over other problems but now I want to enjoy each day and CPAP has made that happen.


My problems with CPAP were my own making for the most part.
1.) Not going to the Doctor !
2.) Not starting CPAP sooner
3.) Not wanting anything on my face
4.) Not having a basic understanding of my body
5.) Not having any idea what CPAP does

After starting with the old unknown machine that was set to what ever the last person used and seeing it work I was ready to give CPAP a better try. I bought another machine that was adjustable I did not know how to do it but in trying to find out how I found this forum.

I was able to get to a doctor after about a year with the second used CPAP. I got a home sleep study and that opened my eyes to the fact that I was in deep trouble. Years of neglect about the problem had made more problems. Lack of oxygen does a lot of harm. A measured low of 64% oxygen was not good and that was after a year of my old CPAP.

I got a New Auto CPAP thanks to the doctor. With the first settings on the machine it helped make things better. I kept reading this forum and trying to get an education about CPAP and its effects. The Sleep doctor was not very responsive so I started to make changes to the settings on my machine. I bought a oxygen meter that would be able to feed into SleepHead.

I got a home oxygen machine and would use it when I woke up to help get over the head pain. Most days it was 4 to 6 hours of pain when waking. After using oxygen upon waking I was able to cut that in half. I finaly got brave enough to hook up the oxygen to the CPAP. I started with one hour and looked at the oxygen meter readout. When sleeping and using CPAP with oxygen I could keep the oxygen level in my blood in the 80% area. This was a big improvement.

The gloves were off, oxygen all night. Over about I saw a steady improvement in my sleeping oxygen level. My waking head pain went away. I began to see my daytime oxygen level improve also. A lot of life was returning. I could take out the trash, I could walk 100 feet and not feel like death.

It has been about six month now and I can walk 1000 feet and still improving. This has led to many other improvements in my life also. The other issues will take their course but I no longer look for the day to see if I will get into heaven. I can help others now and that is great.

If you made it this far and

Henry

[calliopy2]

Good for you!!!! In a culture used to immediate gratification, it is difficult to change our mind set. CPAP takes perseverance and courage along with a hefty dose of time. It is unfortunate not all medical personnel are good at what they do, this coming from a nurse. It is prevalent in all professions, some are good and some are not so good. This forum is a great place to get help. and encouragement
It took me a year to get the AHI numbers down to below 5 and some days it still creeps up. Congrads you are traveling down a positive path to better health.

[JaneAM]

1. How is CPAP therapy making a positive difference in your life? What impact has it made upon your health & happiness?

I just finished 3 months of using my APAP. The first 2 months I hated it - my AHI #s bounced around from 3 to 15 and I couldn't really tell why - and I didn't notice that I felt any better. If anything, my sleep felt worse than it did before. I used to get up 2 or 3 times a night; now it had morphed into 6 or 7. However, thanks to lots of encouragement from members of this forum, I kept using it. The last two weeks have brought the change I was hoping for - I no longer feel fatigued in the afternoons. If I get up at night, it's only 1 time. It's amazing! And for the first time, I have a 7 day average AHI reading under 5.0. I feel more energetic, my memory is better and my thinking is clearer. Now that makes that obnoxious mask (which I still don't like ) worth it!

2. Have you had any problems with CPAP that you solved with a positive outcome? If so, what did you do to solve the problem?

I bought a second mask, and alternate between a minimal view and a full face mask. The full face mask leaves ugly lines on my face, so I avoid using it on days when I have early meetings. However, the full face mask is more comfortable for me, and so I use it when it looks like the day starts with time alone in my office.

I also bought mask liners from Pad-A-Cheek and that helps somewhat with the face lines (although doesn't eliminate them).

I have had lots of questions about proper use of the CPAP and found that it is pretty much impossible to reach my sleep doctor or the medical supply people on the phone to answer questions. I'm very[/color][/size][/font] happy that I found this forum to answer my questions, listen to my complaints, and offer encouragement along the way.