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Your Personal CPAP Success Story - Post Here
RE: Your Personal CPAP Success Story - Post Here
Got put onto a clinical study late November last year which entailed me going in to hospital for an overnight sleep study (as a preface, I was put in to the clinical study as I scored highly on the Epworth sleep test and the doctors suspected that I may have OSA). 

Sleep study did confirm I had severe OSA with an AHI of 59 which shocked me as I knew I snored but didnt think it was that bad. Got put onto a titration study mid Feb and determined that I needed 10cm pressure so was issued a script and I got myself a loaner machine for 4 weeks while I saved up for a deposit for my own machine (I got given a loaner as well by the hospital but no mask so I decided to buy a complete set on installments; also the loan machine the hospital gave me didnt have a humidifier and to get it, I would have to go pick it up at my follow up appointment).

Came back late March and sleep specialist was happy with the results (I was consistently hitting AHIs less than 3 with most nights between 0-0.9) but they decided I needed a pressure bump so had to go back in for a final titration study mid May and was bumped up to 13cm of pressure.

I am due to see them again in August but so far, after 3 months I am finally feeling the good effects of CPAP therapy; my daytime sleepiness has decreased, I stay awake while seated on long rides due to traffic, and I now do not have an urge to fall asleep after lunch on weekends or to go back to bed after getting out of bed and having breakfast (although I still find myself falling asleep when I wake up and take off my mask but ill get there eventually).
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RE: Your Personal CPAP Success Story - Post Here
I was in total denial about sleep apnea when my cardiologist recommended a sleep study in connection with atrial fibrilation problem.

Two weeks into CPAP therapy in a total CONVERT.  Though my diagnosis was only "moderate", I'm sleeping better, feel better, and the cardiac rhythm problem has settled down significantly.

Using SleepyHead helped me zero in on the impact of leaks on obstructive events, and refining mask fitting routine to improve outcomes.

My heartfelt thanks to this community and the SleepyHead community!
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RE: Your Personal CPAP Success Story - Post Here
Diagnosed 1½ years ago, I went through all the same problems that everyone here went through. By solving one problem at a time, I slowly got to where no more adjustments were necessary.  Now I am at the end of adjustments (maybe).  It has taken me this long to say I am successful and I am still not sure if my “journey” is over yet.

Every time I get my AHI down and I am sleeping “better”, my AHI jumps up again. With every jump in AHI, my sleep improves. I guess that is a good thing because it is more about sleep than numbers. [/font][/size][/color]

The month of June my average AHI was <1 with only a few days that exceeded 1.0. I even had one zero (yea), and I was sleeping fairly good. Figuring I must be there; I started this “success story”. In the last 7 days, my AHI has gone up to between 1.0 and 2.5.  I know that is still good and “bad days” happen. The best part of this increase is that my sleep quality again improved. My gauge is how often I wake and how quickly I get back to sleep. Also I use how many (few) hours I stay in bed before I HAVE to get out of bed.

I use MyAir for part of my measure for success as well as encouragement. I use SleepyHead for technical adjustments. [/font][/size][/color]
For the past 14 days (two weeks) I have had a score of 100 every day. For those using MyAir, you know that there are some difficult things you must do in order to get a score of 100.

First hardest thing is getting through the whole night, not taking the mask off. That means no trips to the bathroom. In the beginning I got up at least 2 times. Now I do not get up at all. Also it means no naps. Naps were my favorite part of the day and were pure heaven. Now, no more naps (bummer).
Second hardest thing is getting your leaks under control. I like the way MyAir tracks leaks. You can get max points with some leaks minor leaks. Leaks can even go over the 24 L/min threshold but only for short durations.  In my case, success means 0, *, zero, nada, every day for the last 2 months.

Third hardest thing is getting at least 7 hours “on the hose”.  I know that seems to be easy but success comes with a cost. Now, I no longer need 8 to 9 hours of sleep. In fact after 7 hours on the hose, I am fully rested and want to get up. I can even stay awake and alert for the rest of the entire day.
The fourth hardest item is the AHI.  A score under 5 is considered treated. I got this under 5 within the first few months with just a few adjustments but sleep quality is takes time and patience. My recommendations:

1. Have enormous amounts of patience.
2. Download SleepyHead and learn how to use it.
3. Be patient.
4. Listen to All the advice given here. You don’t have to follow it because not all applies to your situation but it can trigger a question or idea that might apply to you.
5. Ask questions. There is no such thing as a dumb question, only dumb answers.
6. Do not give up.
7. Try every setting you can and more than once. It might be a combinations of settings so keep good records of what works and doesn’t. What works for someone else may or may not work for you.
And most important,( I may have mentioned this before) be patient.

Thanks                       Sleep-well                    Thanks
CPAP is a journey like “The Wizard of Oz”. It’s a long slow journey. You will face many problems and pick up many friends along the way. Just because you reach the poppies, it doesn’t mean you are in Kansas. 
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RE: Your Personal CPAP Success Story - Post Here
I started in the hospital with a lung problem and the Doctor suspected I had Sleep Apnea. I was sent home with oxygen for the recovery and told I'd be receiving a CPAP the following Monday. Well a month later I finally did receive a machine and a F-20 Airfit Mask. They showed me how to turn it on and turn it off. Also received a sheet with cleaning instructions.

After about a month of this I realized that this sucked. I didn't feel any better and even with oxygen I'd have headaches in the morning. The day comes for my Sleep Study and my AHI is 97.3 I started looking on the internet for some answers. I found Apnea Board and it was like a blind man seeing for the first time. There was talk of AHI's and reading your machines data. You could even adjust settings. I joined at once.

The first thing I found out about my machine was I couldn't find a AHI readout. I learn how to access the settings and open AHI for user. My AHI was around 34 for one day. Must be broken I thought so I run to staples and buy a card reader. SleepyHead can't read it. So I download Encore2 and try that. Summary of AHI and pressures is all thats on it. No other data. Also I find out I don't have a CPAP I have a ASV and it's a brick. My AHI average turns out to be 42.6. The hospital and DME have done no follow up and I'm hanging in the wind. On top of all that I get over billed $186.

This is where I adopted the Apnea Board Creed "Take Control". I bought a DreamStation Auto BIPAP online and returned the ASV to the DME. (By the way I don't have Central Apnea according to the Sleep Study). I switch to a Airfit P-10. I start following the advice that's given to other readers and my AHI starts to drop like a rock. I try a Cervical Collar and Wheat Hue pillow and both help.

I finally reach the golden ring. API 0! Well for one night anyway. But I'm at settings that work for me that I wouldn't have found them without Apnea Board. I hope to continue to learn more about Sleep Apnea and help others on the board as others have helped me. Thank you all and Good luck with the on going battle.
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Advisory Members serve as an "Advisory Committee" to help shape Apnea Board's rules & policies.

Membership in the Advisory Members group does not imply medical expertise or qualification for advising Sleep Apnea patients concerning their treatment.



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RE: Your Personal CPAP Success Story - Post Here
Well, here's my story and it's typical at least among the dozen or so folks who have CPAP/APAP machines that I talked to in person.  If you're to pressed for time to read this in its totality, I'm 100+ percent happy with my machine, but I'm going to cover everything from beginning to end.  In the end, God bless the internet.

Originally went in for a sleep study about fifteen years ago, and to be charitable, they were quacks.  I had been out with the Boy Scouts for the previous week, did the sleep study on Saturday night when I got back and was so congested I couldn't breath through my nose at all.  I told the study place that and tried to reschedule but they said no problem, we can do the study anyhow.  I didn't know better so in I went.  They wired me completely up let me rest for a while and then tried a nasal only mask.  Needless to say, they could have used an air compressor with a blow tip set to 160 psi with the same result --- no air was going up my nose, period.

After a few hours of them not listening but continuing just to turn the pressure up, I told them this isn't working, I'm done, goodbye, and good riddance.   So ended my first experience with "sleep professionals".

Meanwhile, I'd been told off and on over the intervening years that I needed to look into a CPAP.  Never looked into it because of that bad experience (plus another bad DME experience --- I guess those guys all have Bentley payments to make) and most of the folks I talked to for some reason were recent converts who had way too much zeal for my taste, like someone who has just recently found religion or been through AA.

Fast forward fifteen years when my girlfriend said that I actually scared her because I would stop breathing during the night for way too long before I'd start up again.  No death snort when I restarted, but way too long.  So, I decided to actually go to my Cardiologist and do a take home sleep study.  He had been telling me to do it and my Neurologist had suggested it as well as sleep apnea and MS do not go together at all.  I knew if I didn't get eight good hours at night, the next day I would be stumbling, shuffling, and hanging onto walls to steady myself.

Side note - I developed RA in mid March of 2014 and yes I know within a week or so of when it started because overnight my bicycling went from senior olympic competitive levels to could no longer finish a century ride over a two-three week period in March.  Exposure to house black mold was my trigger event I think as I was emptying out a very moldy house at that time and mold is a big time RA trigger.  Then the biologic medicine I was on completely stopped the RA but triggered Multiple Sclerosis.  Rare but does happen.

So I got my prescription, had my appointment made with the DME folks and then hit the internet to do my research about types of machines, costs, recommendations, etc.  I was prepared when the DME folks called (I so want to mention the name so that NO ONE WILL EVER USE THESE SOBs) and ready to go.  I was going to have a good and enlightening  CPAP vs. APAP, mask type, etc. discussion.  Quite looking forward to it.

The first thing out of the DME folks mouth over the phone and not even in person was how much it was going to cost in copay for my CPAP machine (Hey wait - what ever happened to making sure they had the right machine first?) and let's make an appointment to get you set up, they already had the machine just needed me to come in to set it.  The copay alone was more than it would cost me to get an entire machine and mask on the internet.  APAP machine was not an option unless I paid the YUGE cost difference unless I jumped through ten hoops.  When I pointed all the cost issues out, they said well, you have to buy the mask but can rent the machine for about $60.00 a month.  They were not amused when I told them that in six or seven moths, I'd pay them enough to buy the whole machine and made reference to the owners Bentley payment and possible lineage...

So I could buy my machine anywhere as I had my prescription in hand and had enough friends who were long term users who would guide me with their experiences.

I settled on an APAP machine rather than CPAP as I liked the idea of its ability to auto adjust every night.  I had several people tell me that they sometimes woke up with huge burps due to excess air pressure.  I talked to people who had bought both and said APAP is the way to go.  I settled on a full face mask as I'm a total mouth breather.  I wanted the humidification option but didn't think I'd use it (I don't) and was looking for good data capture ability.

Jump forward to about two months ago when I received my new APAP machine and started using it.  The super short answer, the heavens immediately opened and the angels sang the first night.  My results were amazing and instant and continue unabated:
  • Sleep like a log.  Went from getting up and peeing hourly to once before I go to bed, once in the middle of the night (depends on how hard I rode after work and my hydration level - I may not wake up at all) and then right before six which is when I get up anyhow.  Always up now before the alarm goes off.
  • No red eyes in the morning caused by high blood pressure.  That was a surprise.  Blood pressure lower in the am as well.
  • RA - no effect as the medications (Methatrexate weekly and Rituxan IV three times a year) had that totally controlled.
  • MS  - huge impact on my legs in the morning.  I found that now that I get good sleep mornings are still a bit tough but no where near as bad.  My Neurologist was 100% correct in that a CPAP will definitely help with my MS.  anyone who has MS should look at a CPAP if they have any sleep issues as one of the big things you fight with MS is extreme tiredness and ANYTHING that helps with that is a plus.
  • Biking still stinks (from whatever distance I wanted to go at whatever speed my racer buddies wanted to push to 14-20 miles at 11 mph - but hey, I'm still on two wheels so that's victory) due to the nerve damage, BUT and here's the big BUT - since I'm rested I can do that four evenings after work a week instead of one or two, and I look forward to riding again instead of dreading it.
I looked at a bunch of machines but settled on an Apex iCH Auto APAP machine as it had all the features I was looking at plus others and the price was right.  The cost was such that if I ended up needing a "name brand" machine, I could get one of those later.  I could have gotten it from one of several on line suppliers at about the same price so won't mention any one supplier over any other.  I also got an Apex Wizard 220 full face mask.  I looked at several masks and don't see much difference between them except cost.

What did I learn so far?  Well, I found your board as a good resource and hear are some other thoughts:
  • I hate local DME suppliers.  they are money hungry jerks who do not give a rip about the patient, just the sale.  I'm sure there are wonderful and caring DME suppliers out there, but I haven't met one, talked to one, or heard of one.  If they exist, they probably live next to the unicorn corrals.
  • Shop the internet as you can get the exact same machine as any DME supplier will sell you (and a fraction of what they bill your insurance company - in many case thousands of dollars - full retail) at a fraction of the cost.  In my case, APAP machine for less that the cost of the copay alone for a CPAP and that offends me greatly.  I saw several people here who said, "don't use the internet, beware!" on this site (and other sites) and I think they were DME owners/employees sowing seeds of FUD to increase sales or are just so clueless they don't even know they're clueless - "internet experts" holding forth on things they know not.
  • ANYONE can set up a CPAP machine if you do a little research on how to get into the "magic" provider settings.  There is zero, zip, nadda, nothing magic about setting the machine to match the prescription and to use a bit of trial and error to find the exact settings that work best for you.  Just review your sleep data and adjust until you have no/minimal apnea events.  I suspect that setting it yourself will even be better than using the provider settings as they'll set it up in seconds, you'll have weeks to experiment.  If you're honestly afraid to set the machine up, get someone to help you, it's easy, or as a last resort, use the local DME guy but get a CPAP if you need one.  If you're unsure, go the rental route and then buy one.  By then you'll know enough to do that.
  • I bothers me that you have to skulk around on the internet to find the provider settings.  there is no reason that they are not front and center and supplied in the owners manuals.  Ok to put caution notices or say your provider will set these for you, but to make them mysterious and hidden?  Come on!
  • I used the CPAP and the APAP settings and I ended up using the APAP mode.  I set the CPAP and got the best results when set to  ...drum roll... exactly what the APAP came up with.
  • No idea about the humidification feature as I don't use it.  Plus not excess clean up issues with no water around.  To quote DePow (sp?) from Star Trek episode Amok Time, "De Air iz De Air."
  • Biggest decision was the type of mask, full face or nasal.  Easy for me as I am now and always have been a mouth breather.  I think if you can use a full face mask it might be better as if you have a head cold you can still use the CPAP.
  • PVA feature (to shut off pushing air when you exhale) was something I thought I wanted to eliminate belching from over pressurization but I found I didn't need it.  It worked but did nothing for me.
  • If I had to buy another one now, I'd get the smaller Apex APAP (XT Auto I think it's called) unit without the humidifier as it was about $100.00 less with all the other same features, probably the same guts just repackaged.  But, we'll see how I do this winter.  I may end up using the humidifier.
  • The one I have is small enough to travel with with no issues.  I take it every other weekend to Corpus Christi and the case that came with it hold the machine, hose and the full face mask.  If I flew more, I'd get a micro travel machine.
  • I got one mask for just over $100.00 that had all the sizes (small, medium, and large) as I really didn't know what size to get.  I ended up using large but can use medium and still can't decide which one works best.  I guess I'm a medium large.
  • The absolute best resource bar none is people you trust who actually own AND USE a CPAP/APAP machine and have for a few years.  Nothing teaches better than experience with a CPAP/APAP machine.  I know in just the last month or so I now understand what I only read before.
  • I talked to more people who have a CPAP machine new and pretty much unused in the closet than actually use them. 
  • I was surprised that I had zero trouble getting used to the mask.
  • I go to bed and calm down completely for a few minutes before I mask up so I don't have any sort of shortness of breath feeling when I first use the machine.  I was surprised when I told that trick to a machine owner/non user who tried it.  One now uses their machine as they couldn't get through the first ten minutes of wearing it.
  • I won't ever have a machine that can't ramp up the pressure slowly.  I tried just having it slam me at 10 in CPAP mode (where it ends up automatuically) from the start once.  That lasted maybe five minutes before I changed that setting.
Well, there is may success story.  And it really is a success story.  I use the Apex software (got from this site) to analyze the data and will try to use Sleepyhead software soon just to see what the difference is but no rush as everything is working fine as is.

Cheers!

Ken Hylton
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RE: Your Personal CPAP Success Story - Post Here
Have been on & off xPAP for over 5 years.

My first machine was a pretty standard CPAP unit, doctor and sleep center assured me it helped, but I felt no better, was not able to tolerate some aspect of the treatment, typically woke up after 4 or so hours not being able to breathe, and turned off the unit. Doctor and provider were not able or willing to address the problem, I was simply labeled as "non-compliant", and they took the machine away (with no complaints from me, the unit didn't appear to help, disturbed my sleep and my health).

A year or so passed, doctor said, "Lets try BiPap", more or less. I got a Respironics System One BiPap machine. I was able to make it 5+ hours on the machine and was able to breathe fine, but after about 5 hours my mouth was bone dry even with the Humidity setting on maximum.  Odd thing was, the unit was using only 10% of the water supply in that time. I told the provider that the humidifier was obviously defective and needed to be replaced.  They said, if the humidifier was getting warm on the bottom it was fine, and it was, so I didn't press the matter even though I should have realized it was nonsense. A month or so later the humidifier stopped working completely. It was the provider's fault but they ended up taking the unit away (much longer story that I will be glad to relate later).

After this, I thought, fine(!), I will fix this problem (the apnea) myself. My AHI was 33 and my weight was at least 90 pounds too high. I refactored my diet about 3 times over the following year and a half and lost that weight, and I was sleeping better (anyone with diet questions feel free to ask, but I am not going to tell anyone how to live their life).

Fast forward to around 9 months ago. Another sleep study (AHI 22, reduction of one third due solely to the weight loss), new Auto CPAP machine (that actually works and I love), and new provider (at my insistence). Switched from my old Resmed Quattro FX mask to Respironics Amara View per my last sleep technicians recommendation. After a few glitches with the mask not being sized & fitted properly, I am pretty happy, my AHI is typically at or below 3, and I am making it all the way through the night.

A huge help has been sleep retraining via sleep compression therapy or sleep restriction therapy. I've been working with a clinical psychologist who's been teaching me the methodology. Apparently my sleep pattern was completely haywire, as if I was getting almost no deep sleep and now I am.

I feel better than I have in years.
Geoffrey Rush as Philip Henslowe, (Shakespeare in Love) "I don't know. It's a mystery."
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RE: Your Personal CPAP Success Story - Post Here
I have now been on CPAP therapy for twenty three months and after a few false starts with a Resmed Airsense 10 Auto that was noisy with Darth Vader sounds  I have settled into therapy well. I have been using a Resmed Airsense 10 Auto For Her for the last  six months and have just had my third zero AHI night in the last two weeks of therapy. Long term my AHI is around .5 and the 95% rate for leaks is zero.
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RE: Your Personal CPAP Success Story - Post Here
Pad-a-cheek has been my most recent discovery thanks to anew CPAP supply vendor. 

Best - try some more! Chuck
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RE: Your Personal CPAP Success Story - Post Here
had the overnight sleep test about 9 months ago, my own doctor said the results showed 'mild' apnea, so i never followed up.
my increased snoring made me, under orders threats from HID, take my results to a sleep therapist who said my apnea was mild on my side but severe on my back.
a 3-week test and $250 later, my snoring and sleep were so much better.
the test was with a dreamstation auto cpap with humidifier, a dreamwear nasal mask and a P10 mask.
i liked the dreamwear mask, 100% fit and tube out of the top of the head.
P10 was ok but noisy.
1st 2 weeks on auto, monitored by the doctor, produced good results
3rd week i was put on constant pressure of 7, which i found uncomfortable, even with ramp.
i bought a dreamstation auto cpap with humidifier and a dreamwear mask about 4 weeks ago.
thanks to sleepyhead software, i can produce my 1st months results.
AHI = 3.15
average pressure = 5.59
90% = 7.00
highest pressure = 10.40
snoring - almost non-existant
still like a nap every now and then (who doesn't) but now they are few and far between.
can't say there's been a great improvement in energy levels yet.
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RE: Your Personal CPAP Success Story - Post Here
I just remembered I didn't add my 2 cents here. Oldtimers stinks.

I was diagnosed with severe sleep apnea in early 2015 after suffering with episodes of heart palpitations, quick and shallow breathing, dizziness, weakness, and severe fatigue. Due to family heart history, I went through months of getting the heart checked. While that was ongoing, the heart specialist refused my FMLA request, causing me to lose the
IT-ish job I had.

So the heart checked OK and I was referred back to my family doc at the time. He referred me to my current pulmonary doc, who set me up to get a PSG on CPAP. I scored over 70 AHI. Never using it before, not excusing it, but I was not well informed, I failed compliance due in part to not being able to breathe against the 18 on said CPAP.

I gave up on xPap for about a year, focusing on weight loss via bariatric sleeve surgery. A huge success overall as I went from 300 to 201 in about 7 months. There is a but though. But I still had sleep apnea.

So another PSG for BiPAP in early 2017. Another fail as it was revealed I have mixed apnea. During the BiPAP time I also joined Apnea Board to learn about apnea and xPap devices. Then there's the journey to get the ASV machine and a new DME to work with.

As y'all know, I've got that ASV, and it's working it's tail off getting me under 3 AHI average. So here's another success due in part to the gang here at AB with great advice and lots more patience than the current Duck seems to exude.

Thanks y'all,
Dave B.

PS I've always used a FFM and I don't promote political correctness ever FWIW
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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