Your Personal CPAP Success Story - Post Here

[mm0312]

Hi everyone, I’ve been reading through these success stories and now I’m more optimistic about my own sleep apnea after finding this board. I have both positives and negatives with my first month and a half on the CPAP machine.

At my last physical mu doctor asked me if I felt drowsy during the day or if I fall asleep during the day, and I said yes that even after an 8 to 9 hour sleep I was still tired all day and felt like I just wanted to sleep.  He said that we should do a sleep study.

First sleep study was the take home machine for two nights, had no problem and it produced good results. Then they called and said they want to do an in office overnight study, they said that we got great results even though I felt like I tossed and turned all night.

After the second study they had me in to see the sleep doctor the next week and he did prescribe the Auto PAP because at both low and high pressures my results were the same. They issued me a ResMed Autoset S10 and the ResMed P10 nasal pillows.

The first two night with the new machine were difficult because I was not accustom to the mask and the noise of the machine, but after the third and fourth nights I could actually feel the difference with not feeling drowsy during the day.  The fifth and sixth night were amazing, I actually had dreams which is something I have not experienced in years.

After the third week, the machine started getting louder, I found suggestions online that said to make sure the humidifier gasket was seated correctly. The noise would not go away, so I ordered a new humidifier to try, it was a little quieter the first few nights but then the noise increased again.  The noise would start out low but by morning it was very loud.  I struggled with it going from soft to loud for a week and then one night it started loud and stayed loud all night no matter what I did with re-seating the humidifier.

I called my provider and told them what I was experiencing and did not know if it was something I was doing incorrectly or if it was the machine, but I wanted them to check it and let me know.  I took the machine in and twenty minutes later the tech came back and said he had to replace the machine, it was defective.

I’ve now been on the new machine for two nights and this one does not make any sound that I can hear at all and the sleep has been amazing again.

[jxyzobrien]

Successful journey took over a year
47 ahi on hospital test,  262 lbs (now 215)

I was starting to kind of losing it mentally because of sleep deprivation
it was beyond scary

lost 47 lbs (still more to go) and last night was best stats yet and
i am still a tad tired but i don't get real tired till dinner time. could not make it thru lunch previously.
exercising every day now (20 mins).

when i can not use machine or have
bad night i really notice difference.


last night stats ahi 1.09, ca 0.36 obstruct 0.48 hypno. 0.24
and 8.2 hours sleep all near perfect.

Many people give up and sell machines on craigslist, I would guess at least one third.
You may lose your life or happiness to sleep apnea you are worth the effort.
Not all nights will be good so be patient.

From authorization for  2 sleep tests in hospital, 3 visits to pulmonary doc, 3 visits to ROTECH, trial and error for months with mask, loading software
then learning how to use it. learning to change machine settings.

I know of one person who simply plugged machine in had working within a week or 2.



First problem
It took 4 months to get  info to ROTECH to get machine (after hospital testing and endless doc visits taking over 6 months)
 
solution: carry sleep test records and authorization records to equipment company. you can not
expect they will transfer info correctly

2nd issue
learning the mask. I had real trouble with full mask so went to nasal. many are as  i am a mouth
breather so its is next to impossible to have no major leaks with nasal mask.
I went back to full mask loaded software and fixed leaks.
Someone on the board correctly posted  that a nasal mask will probably not ever work for mouth breathers.
That advice was priceless.

Adjusting the mask so no headache (too tight) and just right.
Seeing no leakage takes time and practice.
Adjusting pressure takes time and learning how to use the machine as well.
I have used ambien in the past and it really helps me. My numbers are always better when i use it.
Some complain its addictive. I have no problem and have easily went off of it previously.
again trial and i error and everyone is a tad different. use whatever helps


Psychologically it is very tough for the brain to get used to the mask. Eventually you forget
you have it on.

some on the board are nurturing and patient and some are not.
Some will give you the coulda's and shoulda's ignore them. Keep plugging.
Nothing worth while is attained easily.

sound sleep to all tonight

[grumbledore]

Wow, tough going, but so glad it paid off for you. Great AHIs!  Sorry to hear the medical-business complex was so intransigent though.

Yeah, sleep biology/neurology/whateverology is complex, different for everyone, and getting stable results can take a long time. Like you said, practice, practice, practice.

I know what you mean about not using the machine. When my pump's power adapter blew out, it took over a week to get it replaced and I was just miserable. CPAP therapy is an addiction I can live with! I'm shopping Craigslist now to buy a backup machine to carry me through the next breakdown (and for traveling, which can be hard on a machine).

As for the mouth breathing, have you tried a chin strap? I tried several and found one that seems to have magical properties - the one that's a wide elastic band that only stretches in one direction. I had early problems with lip leaks and dry mouth, even sometimes with the strap, but after several months, those problems disappeared. The strap seems to help a bit even without the pump. Persistence pays.

[Kayak18]

Hello all,
Only 10 days into the treatment, but given where I come from, I believe the results qualify as a success story...

I was diagnosed with OSA in mid-january: My AHI was 120,6, with frequent O2 de-saturations (I hit 62% twice during the sleep study). The doctor named me patient of the year 2016, and probably of 2017. He said that because of me... all the instruments were calibrated/checked for faults - and none were found. CPAP skeptics, please keep that 120,6 in your mind...

So yes, that gets me scared, and yes, I'll take the CPAP thank you. He prescribed 7 cmHO for the first month, 12 after that, depending on results.
Quick trip to the tech shop, they provide me with a Resmed Airsense 10 "Elite" set to prescription, and we start trying the nasal masks... The Resmed, Philips and what have you masks were a disaster, at least for my face. Uncontrollable leaks even at 7 chHO, never mind 12... And then they made me try the F&P ESON 2.

 ... what a GREAT mask...

The first three days were fine for me (7 cmHO). The leaks were minimal, I could live with the mask on, had no problem falling asleep, and the sleepyhead AHI figures looked waaaay better (25-35, one 57...). But then another forum's admin told me... that they were terrible. Sleep-deprived me completely disappointed and skeptical... I hadn't slept this well in years... and now someone tells me "not good"??

But this person kindly went further, and showed me how to read the rest of the data, such as flow limitation - and how to tweak the system myself. 
So after only three days of data, I increased pressure from 7 to 12 cmHO. Slept like a baby. AHI= 9... 
Increased to 13 cmHO, and my average for the last three days is 2,8. I feel rested. I have a lot sleep debt to pay back, but things are looking better for me. I'm not out of the woods yet... But my personal conclusion is that xPAP treatment is NOT something you can undertake successfully... if you don't have the adequate combination of equipment, information and support. 

So if you're in trouble with CPAP... Hang in there, place a reasonable but limited amount of confidence into doctors, and own this syndrome. It can be beat

[grumbledore]

What a great success story! Or as DarthVader said to Luke Skywalker, "Most impressive".
So glad you are getting restful sleep.
Great advice too!

[Melman]

I've only been taking responsibility for my therapy for a little over a month but I believe I can claim success.

I joined this forum in Feb 2015 but didn’t visit it much and never posted to ask for assistance until Feb. 5 of this year (BIG mistake) after I got a machine that was data capable. Since then, with the help of this forum, a better machine, and access to data on my therapy I have experienced significant success both in improved therapeutic data and a feeling of greater well-being.

I was originally diagnosed with moderate sleep apnea 10 years ago with and AHI of 27. I was given a Remstar Plus constant pressure CPAP machine set at 9 cm water pressure. It was not data capable and gave me no feedback on my therapy.  I used that machine until I got a new ResMed AirSense 10 Autoset on January 25th of this year.  It was originally set in CPAP mode with a constant pressure of 10. 

I began looking at data on MyAir and was surprised that my AHI was often above 5 and sometimes in the low teens. I also saw for the first time that my mask, the Quattro FX leaked, more than I realized. I emailed my clinician about my concern and asking for guidance but got no response.

Fortunately, I recalled this forum, began using sleepyhead, posted data on the forum, and got some real help. It was suggested that I switch to APAP mode but was reluctant to proceed without the approval of my Dr. So I sent another email asking to try that. In the meantime it was suggested from the data I posted that a big part of my problem was probably due to chin tucks. I got a buckwheat chaff pillow to stabilize my head position and the improvement in my AHI was immediate. The very first night my AHI was 0.16!

Then miraculously, a couple of nights later, my machine was in APAP mode with max and min pressures of 14 and 8. (I guess my Dr. got my email.) I set EPR at 2 based on what I have learned on this forum. For the last 33 days since I have been following the advice from this forum my average AHI has been 1.13. I had one night above 5. The value was 11.8. From the SleepyHead data I determined it was due to several episodes of very bad flow restrictions. I was at my daughter’s home and hadn’t brought my pillow.

I was concerned that I was having too many RERAs so I calculated my RDI for the same period. It was only 1.43.

My therapy data look great and I feel much better.

I’m sure some are wondering if the change to APAP was important since I got such great immediate results from stabilizing my head position. The SleepyHead data show that I still experience flow limitations and the pressure rises to prevent events. So I’m convinced it is the combination of stabilizing my head position and APAP that has improved my therapy so dramatically.

I want to thank the members of the forum for their support and advice. Without it I would still be back with frequent AHIs above 5, less comfortable with my therapy, and feeling more tired.

The main takeaways are:

1. Get a data capable autoset machine if you don’t already have one.
   
2. Get SleepyHead or similar software and learn to understand and use the data.
   
3. Recognize that therapy is more than the optimal pressure settings. Positional issues are equally important.
   
4. Use the resources of this form. There are dedicated people here with the expertise and desire to help you.
   

[Sleeprider]

^^

[Melman]

^^

To use a currently overused expression, you and others on this forum are awesome

[cpatriaw]

I'm 42 male, before using resmed s10 i have all the symptoms except it went bad to worse in the last one year: headache,tiredness,sleepiness,drowsy,memory loss, bad mood,sexual issue,etc...i can sleep almost everywhere. When i got sleep study i was diagnosed with OSA, my AHI score is 63!! I'm about 230lbs.

After 3 months using resmed cpap autoset 10, all my problem is gone. Feels 10 years younger, no more headache. The setting is now 6-15. My AHI is reduced to 1-2 only.

I also had asthma, so i got nucala shot and immurology injection.

[DrmWEaver]

I was first diagnosed with sleep apnea in August 2000.  I have never been serious about it until recently.  This was due to how I noticed that everyone who sold anything to do with sleep apnea was gouging us more than any other business I know of.  I figured because there was so much gouging that sleep apnea was just another vitamin kick to make money so why should I believe I need this?  It's a controlled fan blowing air.  But because it's stamped medical they can charge outrageous prices (since insurance covers it?).  Unfortunately I have never had that type of insurance.

My doctor at the hospital (where I took the sleep study) said that he figured I hadn't had a good night sleep in 15 years.  Huh?  Okay, so what do I do now?  Well, he prescribed a cpap machine at a 12cm setting.  Back then there wasn't as many machine choices and they were all prohibitively expensive.  My first machine set me back $2700CDN.  It was a respironics machine.  That lasted about 5 years and constant issues with it and the head gear - could never get use to either of them and always leaked or dried out my nasal and throat to the point I would wake up hurting.  I bought another respironics machine again after 5 years at $1700 and that last another 5 years.  Same issues as the previous with leaking so loud that it kept me awake.  Bought another respironics at $1500 and that too lasted about 5 years but this one kept stopping and ended up having to be fixed twice during those 5 years.

I was really getting frustrated at how much this was costing me and how long the machines were lasting.  I was at the point I was sleeping more without a machine than with one - making sure I slept on my side since I slept better on my side.   I finally figured out that Canada sold machines for much higher than the USA so I found #1 on the Supplier list and was ready to purchase yet another respironics machine for about half of what it would cost me in Canada but it turns out that they are not allowed to sell respironics or resmed to anyone in Canada.  I was lost cause that is all I knew!  My thought about that is (and this is just my opinion) respironics and resmed simply allows Canadian suppliers the latitude to gouge us Canadians by not allowing anyone outside Canada to sell to us.  Shame on them.  So I started to look at my options and seen a machine that was regularly over a $1000USD on sale for $449USD called the ICON Auto.  After carefully looking at all the features and seeing that they (F&P) are now including the heated hose I decided to get that one!  17 years later all of which was a steady grind to get a good sleep I think I finally found a machine that will work for me!  Even though I was prescribed at 12cm I have it set to auto and a pressure range of 4-20 - it worked great!  Too soon to get any good stats but I am optimistic!  I have some frustrations with the machine but it's nothing to do with the workings of the machine but rather none of the software comes with it - so I can't upload music to it or read the data from the card as intended which makes me feel like I am being taken advantage of but I did find sleepyhead and so what I can't listen to my music on it - I am getting a good sleep now and would highly recommend this machine to anyone in Canada!

I too am glad I found this place and look forward to reading from you all