Unsuccessful CPAP user - need help/advice

[AGold28]

I’ve been diagnosed with sleep apnea for a few years now. Originally I was diagnosed with central sleep apnea and given a bipap machine. I was never successful using it and stopped wearing it. Then I met my fiancé and my sleep apnea really affected our relationship,. We’re engaged and have to sleep in separate bedrooms, i constantly fall asleep while we’re watching tv shows and he feels hurt and alone. 

In order to help things I went to a different doctor and did another sleep test  was diagnosed with obstructive NOT central and given my new machine (Philips Respironics) and I’ve tried both nasal pillows and a full mask. The pressure starts at 4 and goes up to 13. I’ve gotten to the point that I can fall asleep no problem. But once it gets to the the max pressure I wake up feeling like I’m choking and suffocating. I’ve had sleep apnea for years and I’ve never woken up feeling like I’m choking except when I’m using a machine (other than being exhausted I have no real symptoms) but I CANNOT sleep with this thing. The most I’ve been able to sleep is about 2 1/2 hours total but most nights it’s 30min to an hour. I asked the doctor to turn it down so I could get used to it and have it slowly raised back up and all they agreed to do was 12 and said any lower isn’t doing me any good, I said well neither is me not wearing it! 
Any advice? It’s really really putting pressure on my relationship and obviously my health.

[ShaunBlake]

Hi, AGold28, welcome to the family/fun/forum!  (I'm sad to be welcoming you under these circumstances, but I expect you know you will get help here.)

I haven't had your problem getting used to and using PAP therapy, though I have experienced a little of the unpleasantness you describe.  It isn't clear how long you are able to remain asleep before the pressure wakes you.  Is it immediate, or is it half an hour or more?

What you describe makes me hope that you're sleeping long enough that the Dreamstation has accumulated some data – likely not enough to paint a clear picture, but hopefully enough to provide some insight into how to help you resolve the problem.  I don't know your machine but I have the understanding that it can store data it collects onto an SD card, which specialists can scrutinize to determine how your therapy is going.  I'm leading up to asking you to download SleepyHead software and use it to post one or a few charts of your efforts to sleep.  Using those charts is how the gurus can analyze and suggest steps to take to improve your therapy.

SleepyHead can be downloaded here: SleepyHead install

Additionally, it would help if you would read an article on organizing SleepyHead charts to provide the most information in one screenshot: Organizing Your SleepyHead Charts

I hope that you will be able do this and post charts for us to review.

[JesseLee]

Hello AGold28 and welcome to Apnea Board.

I'm sorry that you are struggling and my best wishes in your engagement so let's get down to what you've got to do first. Shaun has given you excellent guidance in the direction you need to go by letting you know about Sleepyhead. Without data collected from your machine that gives breath by breath details while you are sleeping, the advice you will receive is at best a guess. Please download the software, collect the information on the SD card in your Dreamstation using your computer and attach charts that you organize according to the links in my signature. Once you have posted the data, you will receive advice tailored to you individually. Everyone is different and advice is given for your needs and best interests.

You have come to the right place for getting the best possible, genuine, advice. Unfortunately, there is no relationship advice that's tendered here, but, since your CPAP treatment is causing a rift, then at least you are getting help in that department by proxy.

There are many folks here anxious to help.

Best wishes

[Sleeprider]

AGold28, don't get me wrong, but your central apnea never went away and your BiPAP and current CPAP are not going to resolve the problem. Unfortunately you have been seeing ducks instead of docs. When they "quack", you need to go a different direction.

I'll be glad to look at some data off #Sleepyhead that shows why you are failing CPAP, but I already know the reason...you need ASV. Adaptive Servo Ventilation looks like a CPAP machine, but it is able to non-invasively cause you to breath when you have central apnea, hypopnea or periodic breathing.

We can help you navigate the ignorance of doctors that think all apnea is obstructive, or you are some kind of loser that just won't use his CPAP. This is not your fault, and the first step is to prove to your doctor that he is a clueless moron. Let;s get started. Download #Sleepyhead and post your charts using the tutorials in my signature.

[sheepless]

I totally understand sleeprider's doctor comment (and maybe his sense of humor) but new members might not. I don't speak for sleeprider or the apnea board but I'm quite certain that everyone here is far more interested in helping people with cpap therapy than sticking it to the doctors. in fact, I'm pretty sure we all wish that never happens. still, we do tend to want to hold the moron's accountable when they do turn out to be clueless.

[Sleeprider]

No humor intended. If you make your living diagnosing sleep apnea, you should be able to readily deal with the difference between obstructive and central causes. I have a feeling, when we see the details here, it will be obvious, and this is yet another case of "if it's apnea, he must need to lose weight and as we all know, all apnea is obstructive".

Sorry, but I've seen this too much to actually respect the professionals responsible for it. No humor intended. A significant number of these "doctors" should not be practicing sleep medicine, or at least they should quit practicing and actually figure it out.

[sheepless]

yeah, I understand. but you miss my point. an inefficient ineffective system is a sad fact, yes. it's a blessing that you and others volunteer their time and experience to fill a significant need, yes. I'm just attempting to preempt the small chance someone might read your words and conclude our interest in them is secondary to our interest in sticking it to the morons.

sorry to interrupt agold28. it won't happen again.

[tedvpap]

Welcome to the forum.
Many of us have struggled our way to success - you can too.
The forum is composed of true expert - and they will help you.
Start with sharing your data via sleepyhead and also it would be very useful to see your sleep study reports (redact all personal information).

[mesenteria]

Yes, a very warm welcome to the forum.  Sleepyhead is a giant here who has helped more people to fine-tune their therapy than some so-called 'sleep experts'.  He's good at it.  He's also quite apparently fed up with having to clean up the sloppy, indifferent, or incompetent, 'work' of people who take the money but don't know or care enough to actually "Do no harm!"  That key phrase is at the base of medical philosophy, a tenet that is too often kicked aside.


OOOOOoooooooooooommmmmmmmm…..!  It's a sunny day.....someplace.

[gumleafau]

After the experience I went through to setup the auto CPAP machine for my wife, I agreed with Sleeprider comment about some of the sleep doctor shouldn't be practicing sleep medicine.
Setting up the correct pressure for the CPAP machine involved a fair amount of try and error. 
Every visit to a sleep doctor all you get is " I guessed you should try to set the machine to a pressure of XX, come back in a week time and see how it is going"
This process really stretch the whole sleep therapy process over a very long time, this could be month and month of frustration and agony!
My wife hired a auto CPAP machine for nearly six months, go back and forth between the sleep clinic and the sleep doctor yield very little result!
I start posting in this forum about four weeks ago, since then my wife bought a Resmed Aircurve 10 vauto and with the help of members in the forum, the result is encouraging!
It is far better to join a forum like this, post the question you want to ask and get the response back from people that know what they are talking about!