New CPAP patient... HELP :)

[michael1962]

Hi All;

I am glad to find this community here. I was recently diagnosed with OSA and have started CPAP therapy using the System One. This whole process has been daunting and very frustrating. I have suspected I had OSA for many years, but was not proactive in getting diagnosed until after my heart attack. I'm only 50. I am finding that sleep medicine physicians take cookie cutter approach i.e., basically all patients are the same and the treatment is the same for each patient. I have also noticed a dismissal of patient's observations and insight to their OSA. Is this a common experience? For example, I told my MD that there are times when I go to bedf and wake up multiple timed because I am occurring my airway and have to hyperextend my neck so I can breathe. Her reply was it's normal to have a choking feeling when you sleep! The first sleep study had an AHI 2.7. I told my MD I did not think that was accurate based on my symptoms at home. Repeat study AHI 7.2 with 28 hypopneic with 70% reduction of my airway flow. This explained why I needed to extend my neck so I could breathe.

I obtained a second opinion after further dismissive and clinically inappropriate comments from this MD. Additionally, I was having central apneic events some with index 6.1 and I might be having some arrhthymias.
The second MD told me I was being too concern with the central apnea.

Additionally, the second MD changed my settings from A-Flex to C-Flex. When I ask her what was the difference she told me she did not know, but said patients feel more comfortable with C-Flex.

Both MDs are board certified in sleep medicine. I should mention that I am a critical care Registered Nurse for 20 + years. This all has been very stressful because it impact so many aspects of my life and my cardiac health.

Any input from other members would be greatly appreciated!!

Also, after my titration PAP they determined straight CPAP 5cm was what I needed. The first 2 nights at home were hell. I had to do my own titration and determined Auto CPAP with min. Pressure 7cm was what I needed. The data supported that this was the appropriate settings. I did not tell the MDs I did this but said what needed and they wrote the script. If I had not done this it would have been 4 weeks of straight CPAP and no sleep.

[avi123]

could you post your hardware and also post data supporting your saying that 7 cm is what you needed.

[Pugsy]

Hi, welcome to the forum.
Could you please take the time to add your equipment to your profile equipment page. It helps us if we can see at a glance what you are using.
I know it is a PR S1 APAP (from your description of your settings)...is it a 60 series machine (with heated hose) or the slightly older model? There is software available that works easily with the PR S1 machines but SleepyHead (in my signature line are all the links you need to get started) is not yet compatible with the 60 series machine. If you have a 60 series machine (on the bottom of the blower is a model number...560 is the 60 series...550 is the slightly older model) there is another software that you can use. Send me a private message and I will tell you about it.

I couldn't quite get a specific question from your post and I don't do well with general advice unless I am answering a direct question..like responding to numbers on a report or leaky mask problems or whatever.

You mention some centrals...was this from the machine data..then you must have been using some software or was this from the different sleep study? Are they a concern for you now for some reason?

[Guest]

Thanks for some of your replies... My machine is the current Respirionics System One. Great CPAP machine.
As far as how I determine my current needs, when I tried regular CPAP 5cm mode, I felt as though there was too much air way resistance in taking a breath. Could not sleep. Woke up from dreams feeling short of breath. When I changed to Auto CPAP mode and increased to 7cm min. Max at 20cm. Humidifier at 1, A-Flex mode, Flex level 3. Immediately felt as though I could breathe and was able to sleep. Over several days my 90% pressure was 7.9. AHI trending 4.8. To 6.4. Very little OSA event. Most of these where CA. Have very fragmented sleep. I average 4 hours a night. It seems the more sleep I get and deeper and better quality of sleep the more CA event.

My questions; Is this normal for a beginner to have problems in coordinating care with their MD? Should I continue to seek a better match in terms of MD? How do I advocate my needs without pissing off my MDs? I know it takes time to see and feel the results of CPAP therapy, but I am concern that my care may not be managed appropriately. Is this normal for most sleep medicine Docs be dismissive about what the patient is reporting? I feel I am a well informed patient because I am a nurse.

Your advice would be greatly appreciated!!!!

[chunkyfrog]

I would be gasping for air at 5 cm, as my ramp starts at 7.
You need to educate yourself here, as it appears your care-givers---DON'T.
Stick around; we take care of ourselves--and help each other as we can.

[archangle]

I feel I am a well informed patient because I am a nurse.

Well, there's your problem. Nurses and doctors make the worst patients. (Only half joking.)

Welcome to the board.

Please look at the link at the bottom of this post and fill in your equipment on your profile.

Your CPAP will be listed as "PR System One ...."

First off, good CPAP takes some experimentation. One man's cure is another man's poison. AFLEX/CFLEX/NOFLEX/Auto will work for one person and not for another.

Yes, a lot of sleep docs are ignorant jerks. Sometimes they're right and just don't tell you what you want to hear. They deal with a lot of people who don't believe in apnea and won't put up with the CPAP that could save their life.

The first few weeks can be sheer hell, even if you do things right. However, apnea is usually a slow, painful death. Or a sudden painless one. Or worse.

Your body has gotten used to being half strangled many times a night for years. This throws your metabolism out of balance. When you stop the hypoxia and stress, your brain and body sometimes have a hard time adjusting. It's sort of like when a smoker or alcoholic quits.

Unless AHI or your symptoms are really bad, don't worry about central apnea vs. obstructive apnea for now. Central apneas probably don't do any more harm than obstructive, they're just harder to eliminate. Concentrate on wearing the machine and sleeping through the night. Don't panic unless you're really suffering or get really high AHI.

Get the software as Pugsy says.

Don't make big changes quickly. It may take a while to adjust.

[Pugsy]

Being a nurse you know that doctors often do get pissed off if patients step on their turf. They can't seem to understand that questioning things doesn't always mean that we are questioning their "turf" but that we are just wanting to learn...instead their knee jerk reaction is to go into "don't question me mode" and close up to any of our ideas. Not all doctors are this way but unfortunately many are. I don't know of any way to make a doc that closes up...open up.
I had better luck establishing good communication with my doc's PA. So much more open and willing to listen.

Fragmented sleep is tough..it messes with how we feel during the day and messes with our data because the machine often will report "awake" events. Some of your centrals may be "awake" events if you have a lot of awakenings because you will have frequent chances for sleep onset "centrals" to occur along with the awakenings. If that is what your centrals are related to then they are normal and we don't worry about them. Unfortunately we can't tell for sure if the centrals you see are related to sleep fragmentation ..sleep onset or not.

It would be nice if your doctor would help you sort through all this...if he won't then you have the choice to try to find one that will. PITA I know.
In the meantime...first order of business is see if we can work on the fragmented sleep. That needs to be improved on no matter what and the 4 hours of sleep is no where near enough to expect to feel much better.
There are some things you can do on your own to investigate possible cause and effect to see if you can improve things.
Docs aren't real good at this stuff because often it means they have to think outside the box and some of them just don't do that sort of thinking well.

Do you take any meds that might make the fragmented sleep worse? Example..I take Ultram which of course comes with a may cause drowsiness sticker but in the fine print is an insomnia side effect. It wires me up something fierce and if I take it at night I have horribly fragmented sleep...if I can even get to sleep.

Let's see what your reports are showing. Doesn't hurt a thing for you to try to understand them better.
Can you post an image of one of your "better" reports and let us see what you see? If all your "centrals" are grouped together in a very short time window...I would bet money that they are normal sleep onset centrals and nothing to worry about.

[Mary Z]

I had a doc who literally would give me the bums rush out of the office and talk to the tech about any changes without telling me. My current doc is a dream. I am 100% compliant, educated somewhat as a lay person about sleep apnea. He listens to me, respects me, doesn't blow off my questions- he's a great doctor. I actually went to him first for testing and diagnosis, but changed docs for convenience. Big mistake, so went back to the first doc. There are great docs out there. I would say if you go to an office where there is only one sleep doctor and the waiting room is full of people dozing with their CPAP machines run the other way. It's easy for these guys to let their practice grow too big.

[Guest]

Hey Everyone, I am so thankful for this community and to everyone who has posted a reply to my postings. You have given me a lot of information. Educating one's self is so true. As a healthcare professional, I feel there is so much I can learn to help empower myself and to help manage my fragmented sleep and sleep apnea. Thank you so much regarding comments about central apnea. That gives me some comfort. I will need to post my sleep studies and other information.

I feel very grateful for your input!!!!!!