Newbie would like to hear success stories, please.

I'm still very new to CPAP, but I'm quite encouraged by the changes I'm seeing.

I've snored for years. I would occasionally wake with a sore and swollen throat from snoring the night before. My wife and I married a just a couple years ago and she soon mentioned that, yes, I'd snore, but I also stopped breathing. I've woken many times to her trying to rouse me to get me to start breathing again. So, during once a decade annual checkup (pun intended), I mentioned this to my doc. As soon as he looked into my throat, he exclaimed, Woah! I thought he was kidding. Apparently not.

I took home a torture device that I wore that night and was happy to bring back to the doc in the morning. It had the O2 sensor on the finger, two bands around my abdomen, the nose hose, and a large box that sat on my chest preventing me from rolling onto my stomach like I normally did. I took my prescribed Ambien and it took FOREVER to fall asleep.

When I got my results, they weren't pretty. I averaged 54 episodes/hr and my O2 rating was down around 85%. I got my machine (ResMed S9) and tried it out the first night. It was tough to get used to. Like I said, I'm a stomach sleeper, but I'd keep breaking the seal of my nasal pillow if I dared turn over. I was forced to stay on my back. When I woke, however, I felt GREAT! I felt....well, like I had slept! That may seem like a no brainer, except to those of us who are on CPAP. I never realized how crummy I'd felt until I got a good night's sleep.

Now, just 2 1/2 weeks later, I'm more comfortable with the machine. I've toyed with the humidity level and I'm sleeping well through the night. I often would wake feeling as though I'd been drinking the night before, even though I hadn't. I'd feel foggy, a little dizzy, unsteady, and achy. Now, I wake without using my snooze alarm and I feel great! I'm noticing that random body aches (mostly in my legs) are gone. I don't want to take a nap at my desk at 3pm anymore and I don't feel like closing my eyes at red lights anymore! I wouldn't say I have any 'burst' of energy, but now I actually feel like doing things.

I had my 2 week titration a couple days ago. I'm looking forward to getting the results so we can fine tune my machine and make it even more beneficial. I'm also curious to know how my blood pressure is changing. I feel like my skin color is better now.

All in all, it's been a relatively minor change that is bringing about great results. I wish I didn't need it, but I'm happy to have it!

I have Mixed OSA. My untreated AHI in my polysonogram was 116. Who knows how long this was going on. I was waking up tired, and with headaches. And was also snoring loud enough that my step child could hear me through two closed doors, on the other side of an 1800 square foot home.

My first sleep study was 1/28, that is where I got the diagnosis above. This was a split study, so the second half of the night, they tried me on both cpap, and bipap. I failed miserably on both. I first got a brief rundown of the results over the phone, when the same scheduler called me again to set up another sleep study. Up until this point... I thought it was a one and done thing for the sleep studies... so I wasn't to happy. When she mentioned I had some centrals.. I wasn't sure what they were, but had a guess... And was stunned.... From here they rushed me into another study. This was on 2/4. This time they wanted to try me on bipap st, to adress the centrals. After I failed Bipap ST, I was already expecting another test, for ASV, having found this forum and getting great feedback from its members. So instead of waiting for my scheduler to call me, I was calling her to see when she got the study back, instead of waiting for her to call. This lady was very patient, and managed to get me in for my ASV study 3 days later on 2/7. This was a mere 3 days after my second study, she got me scheduled the same day the report was read by the sleep doctor.

After getting this study, I was a little concerned, as I had basically failed asv.. with an ahi around the low 20's. I had a little bit of back and forth with the sleep lab, and my PCP. My PCP didn't want to write the script.. the sleep lab could not write the script, as I hadn't yet met with the sleep doc. After going back and forth between the 2, the sleep lab faxed over the script, my pcp signed it, and I should have been off in a week....

... SHould have. The lady that was supposed to order the machine... never submitted my pre auth for the machine. So they recieved my machine in week, but since she hadn't submitted the auth.. I couldn't pick it up. To shorten the story, a week after I should have gotten the machine, on 2/25. I picked up my brand new resmed s9 vpap adapt and quattro FX medium size mask.

Now to the good part. I want to share how my 45 days of therapy have gone with this machine.

This has gone mostly smooth for me. I used the machine an average of 8 hour the first 15 days. I've been in the high 7 or low 8's most every night for the entire 45 days. I've missed 4 hours one time, and that was when I feel asleep without my mask, I put it on upon awakening and slept for 3 hours with it. I've had 2 nights were I woke up without the mask on, and lost 2 hours that way. Other than that, I haven't had many issues. I woke up ready to conquer the world the first 3 days I used the machine, then went back to how I felt before, and slowly have started to feel more rested. Those 3 nights were I've slept without the machine, I've felt like crap, so that is proof that it is working.

My quattro fx has been mostly great too. It did start sliding up into my eyes, which was annoying, I also started getting headaches around the same time. Headaches about as bad as the 02 desaturation ones I was getting before therapy. My problem ended up being leaks. I boiled my mask seal, this stopped the mask from sliding, and brought my leaks back down to where I was with the mask new, headaches went away.

I feel better during the day. It is again progressive. This week is about the best I have felt in awhile. I have more energy (not as much as the first 3 days.. but I'm getting there), tomorrow, I don't have much to do at work. I can spend the day talking to my employees, vs spending half the day doing administrative work. I've had energy back to go outside, started biking again. I even feel an improvement in my memory. I attribute all this to bipap asv.

I realize I am luckier than most. I did not have to suffer through the wrong therapy. I had a bit of difficulty getting my machine, but way less than some, and my DME never tried to stick me with a 150 or an escape. I was lucky enough to find a mask I like the first time. Unless you count the small the sleep tech tried to stick on me the first titration.

Lastly, I was lucky enough to find this forum, to help me keep my sanity through waiting for my therapy... and has provided valuable tips to help me in these early stages of therapy. Like boiling my slicone seal, using my headboard as a hose hanger, the right kind of wipes to use (damn 14.99 at my DME), how to look at my data, how to change settings on my machine... Probably countless other things that are second nature now, that I forgot I even learned here.

I don't mean to sound like a braggart by posting this... I just hope that it will help someone struggling with adjusting to this therapy, or someone who may just be going through the diagnosis phase, that this can in fact work out, it is worth sticking with.

I'll get off my soap box, and say again, thanks to everyone in this wonderful community. You've made the ride a much more peaceful journey.

Mike.

Hey I'm a newbie and am one of the newly converted... A CPAP machine is saving my life. I started using my new machine about a month ago after going through all the normal sleep studies. My numbers were horrible! My AHI was 59 and my oxygen saturation was down in the fifties.

The physician at the sleep center said during my follow-up consultation, "Please don't take this personally, but if someone came in tomorrow and told me that you passed away last night, I would shrug and say 'I'm not surprised'"! I said, " you have my attention!"

The adjustment period really only lasted a couple of days--although I really don't like wearing the thing. I mean who wants to have a hose blowing hurricane force winds in their face all night (16 CPM).

Having said that ... my AHI, according to the telemetry report is now AHI 0.7! I sleep the entire night, I don't fall asleep at my desk in the afternoon and at stop lights on the way home. But the single most important factor is--I breath!!!!

Count me in the converted column. Do what you have to do, in order to adjust to the machine, but use it! It'll save your life!

Hi Ranger231 ...

I have one question .. When you said ..."telemetry report is now AHI 0.7" .. Your CPAP machine give it to you this data?

I had before use CPAP 54 AHI, but now I don´t know if this value have changed.

Wellcome to CPAP Life !!!

Regards
Javier

Ranger231 wrote:Hey I'm a newbie and am one of the newly converted... A CPAP machine is saving my life. I started using my new machine about a month ago after going through all the normal sleep studies. My numbers were horrible! My AHI was 59 and my oxygen saturation was down in the fifties.

The physician at the sleep center said during my follow-up consultation, "Please don't take this personally, but if someone came in tomorrow and told me that you passed away last night, I would shrug and say 'I'm not surprised'"! I said, " you have my attention!"

The adjustment period really only lasted a couple of days--although I really don't like wearing the thing. I mean who wants to have a hose blowing hurricane force winds in their face all night (16 CPM).

Having said that ... my AHI, according to the telemetry report is now AHI 0.7! I sleep the entire night, I don't fall asleep at my desk in the afternoon and at stop lights on the way home. But the single most important factor is--I breath!!!!

Count me in the converted column. Do what you have to do, in order to adjust to the machine, but use it! It'll save your life!

Used to think sleep apnea was a bunch of hoooey (spelling?).
Got a sleep study at 41.
Placed on CPAP.
1st night I felt like I woke up to life for the first time in 35 years.
Excrutiating back pain on waking every morning...... gone.
Sleeping all weekend while family played........gone.
Won't leave home without it.

My hubby
high blood pressure since mid-30's, thin, military guy.
Treated with 3 ineffective medications for years in his early 40's for "prostate enlargement" cause he woke 8xnight to urinate.
Got him tested, severe central apnea.
Couldn't tolerate ineffective CPAP he was prescribed because nobody realized it was central until I scanned through the study.
49 years old, he had a 98% block to his left main coronar artery (the widow maker) had bypass emergently.
Now he is "working" on getting used to BiPAP ASV, driving me nuts and I'm thinking about cuffing his hands to the bed so he doesn't rip it off.

Started CPAP 3/27/13. It took me about three weeks of wrestling with mask issues (mostly leaks), before realizing I needed to switch masks. The 2nd mask (Swift FX Nasal Pillows) was a charm and I have had a good 4th week on CPAP with low AHI and lots of solid restorative sleep. Hang in there new users - it gets better!

Probably many have written something similar (I have not read ALL the previous posts) but I will add my story. PAP is not an either/or thing, so my first thought for a new user who is not noticing a significant benefit is the question: What needs to be optimized? I say this because of personal experience. It's a challenge to find exactly the right combination of mask, machine, and settings. Each one is critically important. Here's my story.

I had the over-orthodontia-treatment (extractions and headgear) as a teen (modern day orthodontist said I could sue him for malpractice, but life is too short for that). Also have high palate and thin neck, but otherwise none of the clues to sleep apnea (like obesity or anything, I'm thin to normal). Except I did wake up with pounding heart around 2-3 am many nights. My family doc said "probably having a nightmare". I wasn't. I asked if it could be sleep apnea, they did a sleep study and sure enough, it was suggestive of 'Upper Airway Resistance Syndrome' and prescribed a setting at the minimum CPAP.

I rented a CPAP machine for a while, then for some reason which I have now forgotten, but probably something to do with losing insurance, stopped wearing it. I did have palpatations in the middle of the night so went back to wearing the CPAP. Didn't notice all that much difference. Eventually replaced the machine, pressure setting remained the same. Being a stomach sleeper and unable to sleep on my back, I found the Puritan Breeze nasal pillows headgear to be the most comfortable and flexible. I used a hose snuggy cover at first (to prevent rainout and also to make the hose more like a pet in bed and less like a python. But still there was not that much difference in daytime sleepiness or night symptoms.

I ordered one of those cheap chinese made recording Oximeters (Contec CMS50X) and noticed I still had some hypoxia.

Then I learned about the new-fangled machines with memory cards and automatic settings. None of my doctors seemed to know about this, nor had my sleep provider mentioned these options. After reading a lot of online information, about a year ago I ended up getting the ResMed S9 AutoSet with Humidifier. Nice machine, really fancy. But still set at the same old 5 fixed pressure. A waste of money and technology really.

However, I changed sleep specialists (went to a major university center) and was told I had genuine Sleep Apnea, not just upper airway resistance, so they enabled the AutoSet pressure feature to allow a range of 6-10 setting. Now that started to make a significant difference in how I felt. Still same Puritan breeze headgear, but now getting some better quality sleep.

They also noticed I was doing some mouth breathing (despite only having nasal pillows CPAP) and ordered a chin strap. It was a good one (Respironics Premium) but I had a hard time getting it to fit comfortably and did not wear it much. Finally figured out how to adjust it (patience is a virtue) and my leaks are way way down to near zero and I think there has been a significant improvement. Time will tell.

They also prescribed the heated hose option - expensive, but worth it I guess to prevent rainout.

I've had the Resmed S9 AutoSet just under a year now, so I cannot speak to longer term durability, but I cannot say enough good about this machine from my experience over the last year compared to my previous years machine(s). Having the automatic titration and data to analyze with SleepHead software is really redefining state of the art and should be mandatory on all machines.

In summary, PAP is not a order it once and forget it kind of thing. It is a constant process of tweaking and reviewing data and tweaking and learning and finding out what works best for you. Just because the first machine doesn't work for you doesn't mean NO machine configuration will work. It's just a matter of finding that perfect combination. Don't give up!

Catnapper wrote:So I have only had my nose to the hose since August 4 and I am still waiting for the burst of energy. I am committed to making this work for me even though it has been far from easy. I often read encouragement that says hang in there, it is worth it. I believe I will someday get there, and that it may take a good while because I have been sleep deprived for many years.

I believe it would help me, and maybe other newbies, to hear the success stories. Something along the lines of before and after would be great. I would particularly like to hear about the moment that made you realize that you were better.

I want to write my own success story one day soon.

This is such a great group. I have felt so welcome and accepted. Thanks.
I needed that. Nobody else understands what CPAP is like.

Joanie - Catnapper

I know you have some 400 replies already but I have to add my 2 cents. I was sleeping 12-15 hours a day and in a constant mental fog when awake. I have mild OBS on my side and moderate on my back - not a big deal I thought. I didn't really want another medical condition or a 'thing' to use! I had a real bad attitude.
I did it though, and sometime during the last 3 1/2 years (it was about half way) I got better, OH, so much better! I sleep 6-7 hours most nights. I may catch a nap of an hour some days but most days not. I sleep good, I feel good. I can bake, read, have dinner out, act like a grown up. It's going to change your life, so get ready. Hi praise for getting on it & also for finding this great group so soon. I only found them today! I hope you feel better soon.

cpapanon wrote:Probably many have written something similar (I have not read ALL the previous posts) but I will add my story. PAP is not an either/or thing, so my first thought for a new user who is not noticing a significant benefit is the question: What needs to be optimized? I say this because of personal experience. It's a challenge to find exactly the right combination of mask, machine, and settings. Each one is critically important. Here's my story.

Unfortunately not everyone can afford to buy machines that can give oodles of information. If I was not eligible under the scheme they run at a hospital (where I only paid $80 for indefinate rental), there is no way I could afford to buy a machine. I doubt I could even rent one without putting me in severe finanical hardship.
The machine I've been given is the base model, only gives usage hours.

I am sorry if I sound rude, it isn't my intention to be so. I just wanted to point out that not everyone can get the best of the best (this includes health care providers), we do the best we can with what we can get.

I would wake myself up with a snort & a gasp (or two) several times a night. My husband would listen to see if i was still breathing! My aha moment when I KNEW I had to do something was when a chest x-ray was done for possible pnuemonia revealed my heart had slightly enlarged. That was back in Feb of 2011. I had to do 2 sleep studies & after the 2nd one I started on my cpap in July of '11. I did get more sleep but the hose etc took some getting used to! My husband for sure got more sleep (we didn't realize how much my apnea was affecting him!) & now I can't sleep without my machine! I am still tired, (due to restless leg syndrome) which is finally being addressed. Good luck to you newbies. IT WILL get better! As my Dr explained to me, your body has been deprived of a full nights' sleep for ? years, it takes time to get caught up.

i'm 29 yrs old. not overweight. been sleeping regularly for ages. as a shift worker, i had always thought my constant afternoon tiredness had to do with night duty work but after 6 months of only doing day shifts, i realized the problem was still there. took a sleep test and found i had an AHI of 19. have been on the s9 autoset for about 1 month and the difference is immense. i can actually focus on study without feeling tired and my concentration is vastly improved. wonder why i didn't do this earlier.

I started CPAP 3 days ago and so far I don't sleep at all. I am using the Wisp nasal mask which is comfortable and I can breath I just can't sleep. During the sleep test I was using a nasal pillow mask and slept great. Does it take a while to adjust or should I ask for a nasal pillow mask? I was diagnosed with OSA and central sleep apnea including REM disorder by accident. I saw a neurologist for a different reason but the doctor thought my recent health issues odd and asked me how I slept and I said in shifts and I choke when on my back. The doctor sent to the Sleep Center for testing and here I am. I had been telling doctors for decades I can't sleep at night and I was never tested not even given sleep meds.

Thanks,

I found out 3wks. ago I needed a CPAP. To my surprise, result was not good. I have the nasal pillow. I still feel tired with the CPAP, I guess I need to get use to the mask. Where can I get cheap cpap wipes in Canada?

Adjustment success story:
I had a lot of anxiety as my second sleep study, where they titrated the CPAP pressure, was truly a night from hell and I was told by both my doctor and folks here that I would have a lot of trouble adjusting (I had experienced the bloating from swallowing air, sore throat from no humidity, and claustrophobia from the unrelenting storm of the pressure, etc. I thought I would NEVER be able to do that again.)

To prepare, I did a lot of reading on this site and other links folks directed me to, and I wore the mask around the house several days while waiting for my DME appointment.

The adjustment has been quite easy. I want to put on the mask because I want to sleep on my back and I don't want to worry about AHIs. These are some of the reasons I think the adjustment wasn't so hard:

1. I got a WISP mask which was smaller than the one I had used in the sleep study and around the house and it was more comfortable;
2. My machine allows me to breath out and not just be blasted with air when I am exhaling;
3. The humidifier takes care of the sore throat;
4. I like the pressure. I have meditated in the past to try and help my insomnia and the pressure actually seems to help concentrate on one's breath, and this takes away from thinking about the whole apparatus.
5. My respiratory therapist and sleep doc did not pressure me to use it all night ("if it bothers you at first, just take it off and start again the next night") and my respiratory therapist explained that it is normal for the body to respond with some adjustment to having this gizmo on it. This made me feel it was not just a matter of some folks being "better" or something than others. I went into thinking there would be a period of adjustment.

(As to the other part of "success", enough time hasn't passed yet to see my life change and more energy, etc.)

I am using Cpap machine more than 3 -4 years before I join the forum. On that time, I didn't know how and what my readings were because I depend only on manual instructions that came with the machine and technician advice. Basically, every morning I got up press the button check last night reading , oh! last night my reading was under 5 and I don't feel tired, Hummm. I am OK that's about it. Since, I join the forum not long ago, readings member comments and suggestions, learn from their experiences. Try new things and on what they said. Voila, I learned so much, understand a lot. Every single night my readings were always under 1. I saved money and time by followings the members suggestions and tricks. I don't think I thank members and forum enough. Thank you to all experience members.