Advice on my CPAP treatment..more or less not working !

[SleepyFabien]

Hello everybody,

I'm asking you some advices for my cpap treatment, as i'm a little bit confused about my CPAP results, the fact that despite a quite small amount of AHI (< 5) i still feel 'confused', and especially the variation of results according nights, which can be near perfect (but rarely...) or quite disturing (more often...) with PB/CSR.

Here is my story,

I was diagnosed 'apnéist' since december 2011, after a night sleep record, as i always felt sleepy since my childhood. The results was a large amount of ahi 66/hour, no oxymetry variation, and no PB/CSR. I'm a 35 years old man, i was little bit overweight, but no more since 1 year. The doctors were suprised about my AHI compared to my wheight, not really ordinay.

Like most of us, i think, even if this diagnosis is a little bit frightening, i was really happy to find the reason of my daily problems. sadly, it wasn't the end...

Since the night record, i'm on a Respironics System 1 555p Remstar Auto, a Swift Fx nasal pillow mask, and an Aflex presure of 5-12. I have greatly tolerate this treatment since day 1, i can easily make a 6 or 7 hour night. But sadly, since day 1, i didn't feel any improvement of my daily drowsiness. Furthermore, i tried some night without CPAP, the result is 'strange': With CPAP, during the day i feel 'confused', but phisically in good condition. Without CPAP , i feel more focused, but physically tired. Anyway, i continue the treatment.

With the pressure prescribed (5 to 12) i've more or less this kind of results: AHI between 5 and 9, a majority of hypopnea, no obstructive and clear airway represent 50% of hypopnea. Pressure is 95% lesser than 6.5. Pb/CSR is around 4% to 12% of the night.

Here is a snapshot of one of my 'standard night' , even if the pressure is 4 to 6 (to make a test), results are still the same:


I agree that these results seems not so bad, but with an AHI of 5, i feel very sleepy and confused during the day. And often, i make worse nights, without changing any settings like this one:


As you may notice, the previous image was at a time that a made some pressure test to help something, as my doctor doesn't have any suggestion.

And that's what intrigues me. At a constant pressure (CFLEX) of 5.5, i managed to make few almost perfect night : 1 AHI, 0% CSR. During the daytime, i was like in heaven, focused, relaxed and happy:


Sadly, the night after, at the same pressure, i'm back to 5 AHI...and drowsiness.

I've many time talked to my doctor, but he have no idea but giving me Ritalin to boost me during the day. No Way, i want to clear the causes, not the consequences. I confess, my PB/CSR % is scarrying me a little bit, i'm asking me if the reason why the CPAP is not working is that i've a complex apnea, which maybe need a BIPAP. The great variability of my results seems strange to me, and the 'perfect night' i could'nt get often is irritating

If you have any opinion concerning my results, please let me now

Fabien

[Pugsy]

First of all...the Periodic Breathing that the PR System One flags doesn't mean CSR.
CSR Cheyenne Stokes Respiration is a form of Periodic Breathing yes...but not the only form. You don't appear to have the centrals (Clear Airway events) needed to worry about CSR. Though if concerned...do talk to your doctor about it for definitive input.
The PR S1 machine on the Encore reports only flags PB...not CSR. I wish Mark had left CSR out of the SleepyHead terminology. It scares some people unnecessarily.

Your clusters of hyponeas...sometimes ugly and some nights not even making an appearance...makes me wonder what has changed from one night to another. The 2 most common suspects that come to mind would be supine sleeping or REM stage sleep or maybe a combination of both. I suspect that there are times during the night that you need a little more pressure than other nights.
With the machine in auto mode sometimes it just can't respond quickly enough to prevent some events because the minimum pressure isn't optimal for that period of time and those circumstances (whatever the cause).

You had one great night with cpap mode..and the next night not so great...did you try any other nights in cpap mode to see which one was perhaps the oddity?

Some possible explanations for feeling not so great...the clusters...they are big enough to disturb sleep, cause arousals, possibly cause desats in oxygen levels. How is your sleep in general? Is it fragmented...wake up often? If so that alone will cause us to not feel so great no matter how good the reports look.

Some ideas to think about.
If using APAP mode...a little more minimum pressure in an effort to better prevent the clusters ever happening. Gives the machine a better head start on preventing the collapse of the airway.
On the chance that the varying pressures of APAP mode are causing arousals and fractured sleep..maybe a tight range in APAP mode or try cpap mode (with a little more pressure).

Your PB and hyponea clusters seem to go hand in hand...hopefully reduce the hyponeas and your breathing won't wax and wan (that's what PB is ).

If you don't have copies of your sleep studies...might get them to see if there is any mention as to perhaps your OSA being worse when supine sleeping or during REM sleep. It's very common to have this happen and sometimes we just need more pressure during those times. For me it is REM sleep and I would have clusters like yours if I didn't have my minimum set to give the machine a better head start.
I used APAP machine for over 2 years...settings 10 to 20 (varying pressures didn't bother my sleep) and if I lowered the minimum to 9 cm..I would have clusters like yours in what was likely REM stage sleep. During my sleep study it was found that my OSA was 5 times worse in REM sleep. Supine sleeping has never been an issue but REM sure is.
Like you my overall AHI was horribly horrible when I had the clusters but I felt like crap. I would have periods of time with nothing going on and then a couple of big clusters. Once I broke up the clusters I started feeling better.

[Lambeau]

You might want to consider other causes for your tired feelings beyond your sleep apnea.

In mid June this year I had a cardiac event that had me in an ambulance to the ER after phoning 911. It was determined that I did not have a heart attack, but a case of bigeminy arrhythmia, or a skipping of every other ventricular heartbeat. While this condition is not always a cause for alarm, it can be. I spent one night in the hospital for observation with an IV drip, and had a number of tests to be done in the following days. Among those 'tests' where a sleep study, a stress EKG, and a nuclear medicine scan of my heart after the Stress EKG.

My sleep test confirmed me with sleep apnea with an AHI of 39. I was prescribed and received a Respironics System One BiPap machine and nasal mask on July 8th

My stress EKG and gamma ray scan of my heart on July 17th indicated a narrowing of my left descending ventricular coronary artery. That led to me being sent to the hospital again, this time for an angiogram on July 29th. The angiogram indicated that the coronary artery in question was 70% blocked. That meant low blood flow to the heart and the subsequent lack of oxygen to my heart muscle. A stent was then fed though the right femoral artery in my groin and into my ventricular coronary artery. I was sent home the next day, July 30th.

Bottom line for me, was sleep apnea AND a 70% plugged coronary artery BOTH were contributing to my malaise and tired feeling in the day, that even frequent naps did not alleviate.

Now that I have adapted quite nicely to sleeping with a hose on my face, and a stent in my coronary artery, I found immediate and profound increase in daytime energy and my sleepiness has gone away. I can even stay up later in the evening, going to bed now at 10:30 or 11:00 p.m., versus the 8:30 p.m. I had been turning in at due to being so tired.

I'm not a doctor, and I did not even stay a a Holiday Inn last night. But I am just suggesting that there often can be more than one factor to consider for a health malady. In my case, apnea AND a plugged artery were keeping my heart from getting enough oxygen enriched blood to the heart muscle.

[BlackSpinner]

Tiredness is only one symptom of the effect of OSA. Not everyone has it and not everyone is "cured" of it. You may not feel less tired but in the mean time you are also not causing more damage to your organs and brain. It is working, you are just not perceiving it working - big difference.

[chunkyfrog]

I agree with the others; your sleepiness could have other causes besides the apnea.
Possible cardiac and respiratory problems top the list, but it could be as simple as a mineral deficiency or an allergy.
Welcome to the forum.

[SleepyFabien]

Hello,

Thanks for your comments !

In addition to my initial description, when i reached 'good' results in CPAP mode at a pressure of 5.5, i kept this settings for 3 weeks, in addition with sleeping with a filled bag to avoid subpine sleeping. Despite this, during 3 weeks with constant settings, the bag, the same sleep position (same side), nights quality was varying each night. but i made 3 or 4 almost perfect (and non consecutive) nights

And also, since the beginning of my treatment, i never wake during the night, i made generally straight 6 hours nights.

The idea of my start pressure being to low, connected to the apap being to slow to adapt sounds interesting to me. Being in CPAP mode probably has avoided the machine not being fast enough to adapt, and a pressure of 5.5 is maybe the minimum i need during some nights, but not enough for others.
I'ill give a try for some nights in CPAP mode at 6.5, hoping some improvements

I feel desappointed that my doctor didn't propose me these kind of tests, APAP or CPAP, pressure changes, subpine remedy. He is really convinced that APAP with a standard range 4-15 is the answer to all apnea i'm not sure...

By the way, i agree that cpap improve my life, so i can't say it's really non working. But beeing and sitting at the middle of the healing way is...frustrating.

Bye,
Fabien

[chunkyfrog]

Sadly, many doctors do not realize that the default setting is often not a good setting for actual treatment.
Some patients are issued machines set from 4-20, with admonitions to NEVER change it.
--and then the docs wonder why the failure rate is high.
(now where did I leave my 2X4?)

[SleepyFabien]

Hello all,

Pugsy, thanks for your advice, they convince me to do more settings tests, and after 2 weeks, my situation has greatly improved

As i mentioned in another thread, my respiratory rate was very chaotic, and this was for me the sign of struggling nights, wich may disrupted my sleep, explaining my poor sleep quality despite a normal AHI of 5.

To smooth things, i go to straight CPAP with no flex, presuming that a constant flow again my normal respiratory rate would no more force me to hypo or hyper ventilate.
And this works ! Feelings are great, AHI is now at 1, and Tidal Volume, Respiratory Rate are 'smooth', exept during REM stage, but it seems normal.

Fabien

[chunkyfrog]

Wonderful!
You are enjoying the success we all seek,
Good work!