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CPAP for 10 Years - STILL HIGH AHI's!
#1
CPAP for 10 Years - STILL HIGH AHI's!
I've been on CPAP for about 10 years soon after being diagnosed with moderate OSA in 2008.  I started on a pressure of 9, it's increased over the years and is now 13. I see my Sleep Doctor/Pulmonologist usually every 6 months to a year. They download the data from my memory card and it's NEVER under 5 AHI's. Mostly the 30 day average is between 8-9 AHI's.  They never give me any other of the downloaded data.  I use a Simplus Full Face mask and a Philips Respironics System One REMstar Pro C-Flex + machine (I still don't know exactly what kind of CPAP machine this is).  I also have moderate COPD and on last check my FEV1 was about 54 and my CO2 levels are always around 30-31.  I am about 30 lbs. overweight, 64 year old female. I recently had skin cancer surgically removed from my nose and cannot use my full face Simplus mask for the time being due to the incisions and healing on my nose so I bought a Dream Wear Minimal Contact full face mask.  I also figured out how to get more data off my CPAP machine without waiting for my 6 month to 1 year follow up visits with my doctor.  I'm looking at the numbers every single morning (probably not a wise thing to do) and I'm consistently seeing AHI's averaging 10-12 upon wakening and Periodic Breathing averaging 4%-5% every night.  Until I see the doctor again I am confused as to what these numbers may indicate.  I had to go a full 3 weeks after my surgery NOT using my CPAP at all until I got the Dream Wear mask - now I've been back on CPAP for about 2 weeks.  Is there a possibility I may be experiencing Central Apnea? I've asked but they refuse to let me do another sleep study (I've only had the one back in 2008 when I was first diagnosed- everything since then has just been the Data that the doctor read from the card from my CPAP) I am extremely tired all day and have little to no energy to make it through the day.  I also have a very low heart rate (54-59 bpm) , GERD, nasal allergies, a hiatal hernia, mitral regurgitation and heart palpitations and a VERY narrow airway (Mallampati 4). I'm sure all of this probably factors into my sleep problems.  Any advice, input or suggestions would be greatly appreciated - I would give anything to have a better quality of sleep and a better quality of life itself; anything that could help me with that would be a dream come true!
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#2
RE: CPAP for 10 Years - STILL HIGH AHI's!
Jennie download the free OSCAR program https://www.sleepfiles.com/OSCAR and use the links in my signature to learn how to organize and post your charts. I think we can probably help to improve your results, or perhaps give you useful information to change the machine you're using. May people fail to achieve "great" or even acceptable results with CPAP, and Philips users seem especially prone to residual hypopnea. Based on the fact you're using a System One, you are probably almost due for a new machine, and your data can tell us if you might benefit from using bilevel or at least the Resmed Airsense 10 Autoset which is much better at treating flow limitations and hypopnea. Especially with the COPD, bilevel will be a big help.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Optimizing Therapy
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How To Attach Images And Files to your posts
How To Deal With Equipment Supplier
Mask Primer
Beginner's Guide to Sleepyhead

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: CPAP for 10 Years - STILL HIGH AHI's!
(06-10-2019, 10:24 AM)jennie54 Wrote: I use a Simplus Full Face mask and a Philips Respironics System One REMstar Pro C-Flex + machine (I still don't know exactly what kind of CPAP machine this is). 

That's a good machine, as its got full data capability.

Quote:I also figured out how to get more data off my CPAP machine without waiting for my 6 month to 1 year follow up visits with my doctor. 

Do you know what software you're using to do that?
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#4
RE: CPAP for 10 Years - STILL HIGH AHI's!
I don't know about any software on my System One machine - I just scroll to the INFO button on the led screen on the machine itself and click on it. Then I can scroll down and see my hours used, my humidifier setting, my AHI's, my Periodic Breathing etc.  It gives me the previous night's information and also my 30 day average. Mostly I just take pictures of the data since the following day won't show the previous day's data. This way I have this information to ask the sleep doctor about when I have my visit. I tried downloading the Oscar software - didn't look secure so my Norton Lifelock security suggested not to run it.
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#5
RE: CPAP for 10 Years - STILL HIGH AHI's!
(06-10-2019, 05:08 PM)jennie54 Wrote: This way I have this information to ask the sleep doctor about when I have my visit. I tried downloading the Oscar software - didn't look secure so my Norton Lifelock security suggested not to run it.

If you download it from Apnea Board it's secure.

Your profile lists ResScan as the software you're using, which is why I asked you about it. Definitely get OSCAR installed and learn how to post your screenshots. You will get far more help that way than talking to a doctor who seems only concerned with compliance and AHI.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#6
RE: CPAP for 10 Years - STILL HIGH AHI's!
Hi Jennie. You've received good advice above.

A word about the security scan - because OSCAR is a very new product, and because it's not a product of a big software company, virus scanners and security programs automatically label it as suspect. As mentioned above, if you download OSCAR from the official site https://www.sleepfiles.com/OSCAR/ it will be safe. Sleepfiles.com is part of Apnea Board.

A word about your doctor - if you've been seeing the same guy for ten years and you're gradually getting worse it may be time to consider a change. A new doctor would hopefully take more interest in a new patient and not fall into the lazy pattern which your guy seems to have done. In addition, the fact that they refuse(!) to give you any data makes me think it's time for a change.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: CPAP for 10 Years - STILL HIGH AHI's!
(06-10-2019, 05:08 PM)jennie54 Wrote: I don't know about any software on my System One machine - I just scroll to the INFO button on the led screen on the machine itself and click on it. Then I can scroll down and see my hours used, my humidifier setting, my AHI's, my Periodic Breathing etc.  It gives me the previous night's information and also my 30 day average. Mostly I just take pictures of the data since the following day won't show the previous day's data. This way I have this information to ask the sleep doctor about when I have my visit. I tried downloading the Oscar software - didn't look secure so my Norton Lifelock security suggested not to run it.

Jennie, your System One pro has a SD card slot located on the top-center at the back of the flow generator.  This slot accommodates any SD card from 2 to 32 GB in size, and it will record detailed therapy data that can be read by software like OSCAR or Respironics Encore.  Please consider buying a SD card if the slot is empty. They cost less than $10 at places like Walmart, Amazon etc.  We can help you to understand and use the data to improve therapy, and your doctor should also be able to read the data. 

Regarding Norton's warning about Oscar, it is a safe software, but since it is not widely distributed commercial software, Norton does not recognize it.  Please know that the file is hosted only on Apnea Board Sleepfiles servers and it is not possible for it to contain malware.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Optimizing Therapy
Organize your OSCAR Charts
How To Attach Images And Files to your posts
How To Deal With Equipment Supplier
Mask Primer
Beginner's Guide to Sleepyhead

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#8
RE: CPAP for 10 Years - STILL HIGH AHI's!
I do have a memory card in my machine and every time I see my Sleep Doctor (or Nurse Practitioner) I take the card with me so they can read the data off of it.  Like I said the only thing they ever tell me is my AHI (and I guess that's the number from the 30 day average they're giving me) Once in a while they tell me if I have any leakages and they always tell me I'm 100% compliant because I do use the CPAP every night.  And when I saw the doctor last year he just shook his head and told me he doesn't understand why my AHI is still so high when I use CPAP every night. And the only thing they ever did over the 10+ years I've been going to the same sleep doctor is occasionally raise the pressure on my machine. They seem to take zero interest in helping figure out what to do - I've asked on a number of occasions if maybe another Sleep Study is in order (haven't had one since - what 2008?) . At this point I don't even care if insurance won't cover a sleep study - I am desperate enough that I am willing to pay out of pocket for it. I do think that when a person gets to a certain age - I am now in my mid-60's - that most doctors put their focus on their younger patients, maybe because us older patients are not worth the time, effort and cost to get the medical help they need to still be healthy, productive adults. 
Thanks for suggesting this software to get the data from my card - I will give it another try.
My AHI readings from the last 5 nights: 10.5, 10.1, 11.0, 10.0 and 9.5
Another day to look forward to being so tired and worn out that I can't even muster the energy to get on my treadmill for a workout - 10 lbs gained in the last year as things get progressively worse, so it's a vicious circle to say the least!
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#9
RE: CPAP for 10 Years - STILL HIGH AHI's!
jennie54 Wrote:And when I saw the doctor last year he just shook his head and told me he doesn't understand why my AHI is still so high when I use CPAP every night.

You've been putting up with this for 10 years? I think this confirms this guy is doing you no good and you're just wasting time, money and your precious health. I can pretty much guarantee that the amateurs here at Apnea Board will get you better results in three weeks. If you have something difficult like central or complex apnea we might have to recommend a new machine or a new sleep study - but at least we'll be doing something for you.

The difference is that we have the time to work with you and look at all the fiddling details that a doctor doesn't see. And we are all apneacs ourselves, so we know what it feels like, and we genuinely do want to help.
DeepBreathing
Apnea Board Moderator
www.ApneaBoard.com


Bed

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: CPAP for 10 Years - STILL HIGH AHI's!
(06-12-2019, 07:15 AM)jennie54 Wrote: They seem to take zero interest in helping figure out what to do - I've asked on a number of occasions if maybe another Sleep Study is in order (haven't had one since - what 2008?) . At this point I don't even care if insurance won't cover a sleep study - I am desperate enough that I am willing to pay out of pocket for it.

Fortunately, the data stored on your SD card will answer many of the same questions as you would get from a sleep study.

Quote:I do think that when a person gets to a certain age - I am now in my mid-60's - that most doctors put their focus on their younger patients, maybe because us older patients are not worth the time, effort and cost to get the medical help they need to still be healthy, productive adults. 

I don't know. Many doctors just can't be bothered to learn how to interpret a lot of the data produced by a CPAP machine. Many of them only look at summaries of the data and they think that's good enough.

Quote:Thanks for suggesting this software to get the data from my card - I will give it another try.

If you can post your OSCAR screen shots here we can help you a great deal.
Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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