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Cpap & Autopap NOT working - getting desperate
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Thecleanser Offline

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Machine: Resmed S9 VPAP
Mask Type: Full face mask
Mask Make & Model: resmed- mirrage quattro
Humidifier: yes
CPAP Pressure: in progress
CPAP Software: ResScan SleepyHead

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Sex: Male
Location: Brampton, Ontario, CAN

Post: #1
Cpap & Autopap NOT working - getting desperate
I've been on Cpap for just over 2 years now - Diagnosed with severe sleep apnea (30 - 60 events/hour) I purchased a Resmed S9 Elite with heated tubing and water canister and was prescribed a pressure of 16. Aside from purchasing the wrong first mask which leaked like crazy I soon afterwards bought a Mirrage quattro FFM which works great.
The Cpap treatment seemed to have worked for a while but soon afterwards I started getting headaches and then not long after that I started to again get tired with headaches through out the day. A good six months into it now I had read up on how to make pressure adjustments my self on the machine so I decided to try going up with pressure to 17, 18 and even 19. This did not seem to do any thing. Going down to 14 I felt like a million bucks ...... for about a week only and then down hill again.
So I had played this game for a few months more adjusting pressure up and down, feeling good for a few days then back to feeling like crap. The times that I felt good was mostly when the pressure went from Higher to lower.

One year into it and getting quite frustrated I was doing some reading and decided it was time to get an Autoset ( pissed with my doctor for not prescribing me one in the first place) I lucked out and got a brand new S9 autoset for 400 bucks (don't ask...) Not sure on what parameters to set the autoset I set it at 16 to 20 with no good results - wasn't till I set it down to 13 or 14 to 20 that I got good results.
It was amazing ... to be fully functional and wide awake all day (like a normal human being, imagine that) .
Well it only lasted a few weeks and again I started going down hill. Now I'm really getting frustrated - for gods sake I have one of these magical machines that supposed to fix all but here I am tired all day , in fact I could swear that I now feel worse than I did prior to starting Cpap treatment.
My doctor that I started with was quite far away so I decided to switch to a doctor close by. Seen the guy in late June. Before he would do any thing all he wanted was a titration study - had to wait for a titration cause my insurance only covers that every 2 years which was coming in this just passed September. I did how ever mange to squeeze a bit of info out of the guy - he had said getting an auto pap was a smart move and asked why the pressure was so high ? And it dawned on me like an epiphany , why was I keeping the pressure so high ?......its an auto set , it should be able to work on its own from low to high automatically adjusting its self.
So I had dropped the pressure down to 10-18 and started feeling better immediately. I dropped it further down to 8 then down to 7 and 6 - holy crap I felt so good, AMAZING....... simply amazing - I thought man I could have done so much more with my self or life if I felt like this all the time - 4 or 5 weeks into it, I just started going down hill again -It was such a kick in the ass - didn't matter what I did my body just seemed to adapt and go back into its useless state of not breathing properly while I slept and being ever so extremely tired again. I hate feeling like this , I'm snappy at my kids , not enjoying work at all - soo tired some days I just feel like jumping off a bridge to end it ....... this never ending tiredness.

So I did my titration just recently and the doc had said that I needed a pressure of 15 to stop the apneas - he prescribed a pressure of 5 to 20 on the auto set. Knowing that even if it did work it would not last long, I asked the doc what his next plan of action would be when i came back in 6 weeks telling him its not working. He had mentioned some thing about anti fatigue pills. Its at that point I realized this guys prolly just not gonna be able to help me . All he wanted to do was bill my insurance for the titration and some visits.
I cant quite remember but I guess that I had went up with the pressure prior to seeing him cause when I dropped it down to 5 - 20 I felt good again - for all of one week.

So here I am hoping some one here will be able to help.
I'm running out of options but here the ones I am considering right now
Im 6'2 and 275 lbs - a little heavy but not obese - I'm thinking Dr Bernstien or Harvy Brooker weight loss program to try and lessen the severity of the condition.

Another is to purchase an advanced machine that treats complex sleep apnea - I seem to be having quite a few hypopneas - seems to be 50/50 with OA's - Also the higher the pressure the more i seem to get the head aches.

Any help would be great - sorry for the novel.
10-30-2013 08:37 PM
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bwexler Offline

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Joined: Mar 2012

Machine: PRS 1 BiPAP autoSV Advanced, with Heated Tube humidifier
Mask Type: Nasal mask
Mask Make & Model: Sleepweaver √Član
Humidifier: Resperonics Heated Tube humidifier
CPAP Pressure: Max pressure 25.0 cm H20, Max
CPAP Software: SleepyHead EncorePro

Other Comments: CMS 50i with Software for SpO2

Sex: Male
Location: San Marcos, CA, USA

Post: #2
RE: Cpap & Autopap NOT working - getting desperate
You need to get more information and share it here to get meaningful advice.
First get a complete copy of both of your sleep studies including all the graphs.
Next get the SleepyHead software it is free but provides valuable information that can be lifesaving.
With the software you can see what events you are having and when they are occurring. This will tell you if you have Obstructive, Central or Complex Apnea. Until you know what is wrong it will be hard to fix it.

Like going to an auto mechanic, have him change the spark plugs, than the radiator, a new radio, only to discover the real problem was a flat tire.

Start at the beginning ask for help here and work slowly through to a solution. There are many very knowledgeable people that are anxious to help. I can't begin to tell you how much I have learned from them and I am back to being a novice with my new machine.
10-30-2013 08:58 PM
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Peter_C Offline

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Machine: System One DS960HS
Mask Type: Full face mask
Mask Make & Model: Mirage Quattro "MED"
Humidifier: Attached
CPAP Pressure: Auto mode-script is:15/3/3
CPAP Software: EncoreBasic Other Software

Other Comments: Severe obstructive sleep apnea 1999/Just got an ASV machine

Sex: Male
Location: Akron, Ohio USA

Post: #3
RE: Cpap & Autopap NOT working - getting desperate
This may not be what you want to hear, but...

*ANY* Doctor is not the same as a *good* 'sleep Doctor'. A good sleep doctor will want to see and read data from your machine. He will want to see you every 4-6 weeks until this is resolved. He may well order other tests to determine if anything else might be going on besides the OSA.

You may wish to get a data recording pulse Oximeter so that you can see what your O2 stats are doing while you are sleeping, and again, share that with the doctor. A sleep study is only a snapshot of how you were and did that one period of time.

A number of folks here while not sleep doctors most likely can give you so good guidance after seeing data, as in a few weeks worth - including O2 stats. But, if I were in your shoes, and I did have medical coverage (or could otherwise afford it), I would search for and find a good sleep doctor that will do the above and help you.

While I am not you, It took a total of four studies, and nose and throat surgery, and roughly 3 years to get me to a point that I did not feel I was going crazy, and my heart (resting heart rate was 122) started to improve - but they also did not have data-capable machines (that I know of) back then either.

*I* am not a DOCTOR or any type of Health Care Professional. My thoughts/suggestions/ideas are strictly only my opinions.

"Only two defining forces have ever offered to die for you. Jesus Christ and the American Soldier. One died for your Soul, the other for your Freedom."
10-30-2013 11:58 PM
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trish6hundred Offline

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Posts: 6,430
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #4
RE: Cpap & Autopap NOT working - getting desperate
Hi Thecleanser,
WELCOME! to the forum.!
I'm sorry you are having so many ups and downs with CPAP therapy.
Hopefully you can find a good sleep doc to help you get this straightened out.
Hang in there for more responses to your post and best of luck.

trish6hundred
10-31-2013 08:47 AM
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Thecleanser Offline

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Posts: 18
Joined: Oct 2013

Machine: Resmed S9 VPAP
Mask Type: Full face mask
Mask Make & Model: resmed- mirrage quattro
Humidifier: yes
CPAP Pressure: in progress
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Brampton, Ontario, CAN

Post: #5
RE: Cpap & Autopap NOT working - getting desperate
(10-30-2013 08:58 PM)bwexler Wrote:  You need to get more information and share it here to get meaningful advice.
First get a complete copy of both of your sleep studies including all the graphs.
Next get the SleepyHead software it is free but provides valuable information that can be lifesaving.
With the software you can see what events you are having and when they are occurring. This will tell you if you have Obstructive, Central or Complex Apnea. Until you know what is wrong it will be hard to fix it.

Like going to an auto mechanic, have him change the spark plugs, than the radiator, a new radio, only to discover the real problem was a flat tire.

Start at the beginning ask for help here and work slowly through to a solution. There are many very knowledgeable people that are anxious to help. I can't begin to tell you how much I have learned from them and I am back to being a novice with my new machine.

Okay i have sleepyhead software -AHI is low as always between 1 and 4 events an hour. As stated in my first post Hypopnea's and OA's are about 50/50 on the pie graph with 5 - 10 % being clear airway some nights. Ive actually taken a Hi resolution print out of a few nights to the DR. following a couple bad days and good days and asked him what the difference in info is and he was unable to distinguish any difference or what may be causing my ups and downs.
I am 100 percent compliant - actually cannot sleep with out this machine now.
As for the sleep study's I dunno the rules in canada but ill ask the good Dr. next time i'm in for a copy.
As for sleepy head I can post readings - what should I post - good week and a bad week or a full month ? Hi res or statistics ?
10-31-2013 07:04 PM
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robysue Online
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Machine: PR Dreamstation BiPAP Auto
Mask Type: Nasal pillows
Mask Make & Model: Swift FX
Humidifier: PR Dreamstation humidfier
CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #6
RE: Cpap & Autopap NOT working - getting desperate
Seconding bwexler's suggestion to get the software and see what's going on. Both the Elite and the AutoSet record full efficacy data, but you've not told us anything about whether you've looked at that data and what it has indicated about what's going on.

In other words, your story so far has involved a lot of dial winging, but you haven't told us anything whether any of the dial winging decisions have been based on things you've seen in the data. Or whether you were just dial winging based on guessing ...

So at this point, I think the best thing to do is to regroup: Get the software, set the S9 AutoSet to some setting that you've previously used with some success and leave it there for a week or two while gathering data. If you really have no idea on what range to use, then set the AutoSet close to wide open---something like 7-20. (Since you've been titrated at levels above 10 cm, I don't think it's wise to set the min all the way down to 4cm.) Then use the data to figure out where to go from there.

Quote:Another is to purchase an advanced machine that treats complex sleep apnea - I seem to be having quite a few hypopneas - seems to be 50/50 with OA's - Also the higher the pressure the more i seem to get the head aches.
With a 50/50 split between H's and OAs, an ASV machine (the type that treats complex sleep apnea) is overkill at this point. If complex apnea were the problem, you'd be seeing a lot of CAs instead of a 50/50 mix of OAs and Hs.

However, given the fact that you have had some titration studies show that you need 15cm of pressure and that you say you get headaches at higher pressures, you might want to look into a plain old bi-level (a PR System One BiPAP Pro or Auto or a Resmed S9 VPAP Auto). Bi-level machines can be set to allow a (much) lower pressure on exhale (EPAP) than on inhale (IPAP) and that can make it more comfortable to breathe with for some people.
10-31-2013 07:17 PM
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Thecleanser Offline

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Posts: 18
Joined: Oct 2013

Machine: Resmed S9 VPAP
Mask Type: Full face mask
Mask Make & Model: resmed- mirrage quattro
Humidifier: yes
CPAP Pressure: in progress
CPAP Software: ResScan SleepyHead

Other Comments:

Sex: Male
Location: Brampton, Ontario, CAN

Post: #7
RE: Cpap & Autopap NOT working - getting desperate
(10-31-2013 07:17 PM)robysue Wrote:  Seconding bwexler's suggestion to get the software and see what's going on. Both the Elite and the AutoSet record full efficacy data, but you've not told us anything about whether you've looked at that data and what it has indicated about what's going on.

In other words, your story so far has involved a lot of dial winging, but you haven't told us anything whether any of the dial winging decisions have been based on things you've seen in the data. Or whether you were just dial winging based on guessing ...

So at this point, I think the best thing to do is to regroup: Get the software, set the S9 AutoSet to some setting that you've previously used with some success and leave it there for a week or two while gathering data. If you really have no idea on what range to use, then set the AutoSet close to wide open---something like 7-20. (Since you've been titrated at levels above 10 cm, I don't think it's wise to set the min all the way down to 4cm.) Then use the data to figure out where to go from there.

Quote:Another is to purchase an advanced machine that treats complex sleep apnea - I seem to be having quite a few hypopneas - seems to be 50/50 with OA's - Also the higher the pressure the more i seem to get the head aches.
With a 50/50 split between H's and OAs, an ASV machine (the type that treats complex sleep apnea) is overkill at this point. If complex apnea were the problem, you'd be seeing a lot of CAs instead of a 50/50 mix of OAs and Hs.

However, given the fact that you have had some titration studies show that you need 15cm of pressure and that you say you get headaches at higher pressures, you might want to look into a plain old bi-level (a PR System One BiPAP Pro or Auto or a Resmed S9 VPAP Auto). Bi-level machines can be set to allow a (much) lower pressure on exhale (EPAP) than on inhale (IPAP) and that can make it more comfortable to breathe with for some people.

I have been looking at the Data but cant make heads or tails out of it - as stated before I've brought in hi resolution or (full efficacy data as you call it) a 2 page print out per night to the good Dr.. I printed the data following 2 good days and 2 bad days. Even he himself could not see any thing discerning in the reports.

For some time I was on a lower pressure of 4- 13. On the week of October 14th I started a new pressure of 5 -20 - Dr.'s prescription -that entire week I felt amazing - the next week was total krap - shall I post some data? How do I take a screen shot to post?

Yesterday was sh*t day for me - started burning out by 11AM, advil didn't help -stayed that way for the rest of the day -
Today was more headaches, started before 9AM - after a 200 mg advil around 9:30 AM I was sharp till noon when the advil started to wear off - another 200 mg advil around 1:30PM and I was again sharp till 5:30 pm - the 3rd advil didnt help I was sincerly burning out -
Graphs on the reports are nearly identical.
(This post was last modified: 10-31-2013 08:44 PM by Thecleanser.)
10-31-2013 08:40 PM
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DocWils Offline

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Machine: Philips Remstar series 60
Mask Type: Nasal pillows
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CPAP Pressure: 5-15
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Location: Switzerland

Post: #8
RE: Cpap & Autopap NOT working - getting desperate
I feel there might be other factors here involved than just pressure adjustments and they may be related to factors such as weight, food and drug consumption (legal or otherwise), position when sleeping, sleep hygiene, stress and a myriad of other factors that may have nothing to do with your pressure settings. All of this needs to be done in consultation with both your sleep specialist and your GP to find out why you have such variable results. Everyone as good and bad nights with this device, but you seem to have an odd pattern that cannot be due to habituation, although non-compliance may be a factor. Either way, from the scant information you have given, I would suggest to a)get print outs of really good and really bad nights for your doc to compare, and a few of each, examine what else in your environment is going on on good and bad nights or weeks. It may lie completely outside the realm of a CPAP device to deal with.
11-01-2013 06:21 AM
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robysue Online
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Post: #9
RE: Cpap & Autopap NOT working - getting desperate
Thecleanser,

I'm going to break my response up into two posts because I don't want this part to get lost. You write towards the end of your last post:

"Thecleanser Wrote:Yesterday was sh*t day for me - started burning out by 11AM, advil didn't help -stayed that way for the rest of the day -
Today was more headaches, started before 9AM - after a 200 mg advil around 9:30 AM I was sharp till noon when the advil started to wear off - another 200 mg advil around 1:30PM and I was again sharp till 5:30 pm - the 3rd advil didnt help I was sincerly burning out -
Graphs on the reports are nearly identical.

You are talking about daylong headaches and headaches that last over multiple days. And you're saying that the CPAP data looks about the same on a day with headaches as it does on a day without headaches. You're also talking about treating headache pain with substantial amounts of OTC pain relievers. And you are talking about headache pain immediately returning as soon as the pain reliever wears off and not always responding to taking another dose of the pain reliever.

I bring this up because your description of your headache pain makes it sound like you may have a serious problem with chronic headache pain and that it could be the case that your headaches are causing a substantial amount of your difficulties (maybe even MOST of your difficulties) rather than what's going on with your CPAP and OSA.

Let me be clear: It sounds to me like you are assuming your headaches are somehow related to your PAP therapy not yet being optimized. But chronic headaches can be caused by any number of things (including plain old bad sleep caused by things other than OSA). And chronic headaches can really make your life miserable. But fixing chronic headaches requires figuring out the cause of the headaches and treating that. Sure untreated OSA can cause chronic headaches. But so can migraines. And stress. And muscle knots in the back and neck. And TMJ problems. And congested, inflamed sinuses. And if your AHI is consistently below 5 on CPAP, then chances are, your OSA is well treated and your headaches are NOT being caused by ineffective PAP therapy. So my guess is that your chronic headaches are caused by something other than OSA, and you and your docs need to identify what's causing them and figure out how to treat them.

The description of your headaches does not sound like classic OSA headaches, which typically are present when you wake up and get better (without any pain medication) in an hour or two after waking up. Your description of the headaches sound like one of my old "rebound" headaches---a headache literally triggered by taking too much pain medication to treat headache pain. Your phrases "started burning out by 11AM, advil didn't help" and "the 3rd advil didnt help I was sincerly burning out" are the giveaway: That used to happen to me when I was dealing with rebound headaches. Unfortunately, the only fix for rebound headaches is to not take too much pain medication for the initial (non-rebound) headache.

In an average month, how many days do you have a noticeable headache? How often do you take an Advil for the headache? How often does the Advil fail to work?

And before you take the first Advil, can you describe the headache pain? Is it stabbing or throbbing? On one side of the head or on both sides? Centered on your forehead? around the eyes? behind the eyes? at the temples? in your jaw? in your sinuses? in your neck? or sort of all over? Other than taking Advil, is there anything that tends to relieve the headache pain?
(This post was last modified: 11-01-2013 02:58 PM by robysue.)
11-01-2013 02:52 PM
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robysue Online
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Machine: PR Dreamstation BiPAP Auto
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CPAP Pressure: min EPAP = 4; max IPAP = 9;
CPAP Software: SleepyHead EncoreBasic EncorePro

Other Comments: Papping since September 2010

Sex: Female
Location: Buffalo, NY

Post: #10
RE: Cpap & Autopap NOT working - getting desperate
Thecleanser,

Does your machine report an AHI < 5 on a consistent night?

Does your machine report that your leaks are under control on a nightly basis?

This is the second part of my reply to you. In part 1, I talked about the need for you to consider whether your headaches are an independent source of your misery on bad days with a root cause other than possible problems with your CPAP and OSA.

This is a more general response.

You say the good days and the bad days have data reports that look identical or nearly identical in terms of AHI and pressure and leaks. You've told us previously that you experience about a 50/50 mix of H's and OAs scored by your machine. But you have NOT yet told us what your AHI is on a typical night. That's why I asked about your AHI at the top of this post. We need that information to say anything intelligent about what's going on.


If your AHI < 5 consistently:
Since you have both good days and bad days, then you need to take DocWils suggestion very seriously: What factors other than OSA and CPAP in your life might be affecting how you feel on a day-to-day basis?

As DocWils suggests, you need to think about things like:

Weight, food and drug consumption (legal or otherwise). Any connections between good (or bad) days and what you choose to consume? Caffeine, alcohol, sugar, and all kinds of other things are capable of making some people feel miserable on days they consume them.

Position when sleeping, sleep hygiene. Bad sleep is not always the result of OSA (or CPAP intolerance). Any insomnia problems? Any bad sleep habits? Anything as simple as "I wake up with a bad pain in the neck that throws my whole day off if I sleep in a funny position sometimes."? Is your bed truly comfortable? Is your bedroom reserved for sleep? Is it dark enough and quiet enough for quality sleep?

Stress. At work? In your personal life? Good stress? Bad stress? Any major changes in life (even good ones) come with stress, and intermittent stress can make lead to feeling pretty crappy on an intermittent basis.

A myriad of other factors including a variety of other health conditions. In my previous post I bring up the possibility of chronic headaches. But there's a whole host of things that ought to be checked out by your PCP. Thyroid and your vitamin D level are two obvious ones, but there are others. When was the last time you had a general physical exam with your PCP?
(This post was last modified: 11-01-2013 03:16 PM by robysue.)
11-01-2013 03:12 PM
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