cpap not working

Good morning. Had a question and hoping to find answers. I've been on my cpap machine for almost a year now. I'm in the military and I recently transferred to wa. From ca. I was diagnosed with obstructive apnea, but I don't think that is the case anymore. I tried to tell my Dr that in ca. But he said everything is fine. Now I get about 3 to 4 hours of sleep a night and play catch up on my days off. It's hard to fall asleep now. Every time I go into sleep I stop breathing and I know it's not always obstruction. I breath out but I don't breath in constantly in the falling asleep stage no matter what position I try to sleep in. Now it has gotten so bad that my heart doesn't feel right and at times hurts and I'm actually scared to try to sleep and tonight was the most violent ones so far. I've told my dr. this my last appointment with him before i transferred and pretty much begged him to turn up the pressure. So after arguing with him that everything is NOT fine like he said it was, he gave in and bumped up the pressure to 7. This still didn't work and things are worse. chest pains, puking, gasping for air and honestly afraid that I'm coming close to not waking up right now. Hardest part is trying to fall asleep. I don't use the machine anymore because it's the same with or with out it. Any advice? I will be seeing another dr up here. Unfortunately I don't get to choose who the military refers me too for this. The last one didn't seem to give a hoot. Also I notice that my cpap forces air in, but only if you start to breath in. I tested it and didn't breath in and it just sat there so if I stop breathing how is it supposed to work? Anyways any helpful advice tips would be appreciated. Or just chatting lol.. I'm up lol.

First things first.

Please register your equipment so folks who wish to respond can see what you have.
I have a link on how to do that in my signature block.

Did you have a sleep study? If so, can you get a copy? It has interesting and helpful information.

What you describe sounds like central apneas and you are using a fixed pressure cpap machine which is not designed to cope with this type of apnea.

Once you get your machine posted, then you can get recommendations about software you can use to see how well your treatment is going.

coastie76 wrote:Good morning. Had a question and hoping to find answers. I've been on my cpap machine for almost a year now. I'm in the military and I recently transferred to wa. From ca. I was diagnosed with obstructive apnea, but I don't think that is the case anymore. I tried to tell my Dr that in ca. But he said everything is fine. Now I get about 3 to 4 hours of sleep a night and play catch up on my days off. It's hard to fall asleep now. Every time I go into sleep I stop breathing and I know it's not always obstruction. I breath out but I don't breath in constantly in the falling asleep stage no matter what position I try to sleep in. Now it has gotten so bad that my heart doesn't feel right and at times hurts and I'm actually scared to try to sleep and tonight was the most violent ones so far. I've told my dr. this my last appointment with him before i transferred and pretty much begged him to turn up the pressure. So after arguing with him that everything is NOT fine like he said it was, he gave in and bumped up the pressure to 7. This still didn't work and things are worse. chest pains, puking, gasping for air and honestly afraid that I'm coming close to not waking up right now. Hardest part is trying to fall asleep. I don't use the machine anymore because it's the same with or with out it. Any advice? I will be seeing another dr up here. Unfortunately I don't get to choose who the military refers me too for this. The last one didn't seem to give a hoot. Also I notice that my cpap forces air in, but only if you start to breath in. I tested it and didn't breath in and it just sat there so if I stop breathing how is it supposed to work? Anyways any helpful advice tips would be appreciated. Or just chatting lol.. I'm up lol.

Welcome to the forum.

To put it mildly, your therapy is a "mess". Your medical professionals have failed you. On top of that, you apparently don't know how these machines are supposed to function. Your pressure is probably suboptimal. AND.......you're probably mouth-breathing or mouth-leaking (which pretty much nullifies whatever therapy you're trying to get).

These machines don't breathe for you.......they help keep/splint your airway open while YOU BREATHE.

You need to keep using your machine. Parking it somewhere is the exact opposite of what you should be doing. And, you need to get MORE sleep.

Please provide us with more information.


Den

.

My cpap is a remstar auto flex system one and the mask I'm using is a nasal eson. I use the humidifier at home but when I'm deployed on the ship I can't use the humidifier. I did a sleep test but never received the results. Those I believe went to my hs on the base. I was only informed by the same dr that I have obstructed apnea and then picked up my equipment an hour away. Then had to come in once a month with the data card. During those times it was just a hello and good bye type apt. Not very informative or helpful. When I told him of the new issues I was having he seemed to get mad. That's when I asked him if he could up my pressure to see if that would work, it was like pulling teeth. I was at 5% pressure and he bumped it to 7%. It worked for about a week and I ended up back were I started. It was working in the beginning until I notice now I just breath out and not breath in and sometimes I know I'm doing this in that half sleep half awake stage trying to fall asleep. I don't think I mouth breath. When I usually do the pressure Wakes me up. Scares the crap out of me lol.

Do you have access to a computer so you could look at your therapy results?
To get the exact model, remove the humidifier tank, turn your machine over, and look at the blower unit.
On the bottom will be a sequence like REFxxx or DSxxx where the xxx is the model number.
Post that and we'll see what data is available for you.

If the xxx number ends with a 6x, then it is a current model. If 5x, then one model back.

With that, it may be possible to get your data loaded. Fortunately, with a Respironics machine, the options for getting at the data are better than if it was a ResMed machine.

Hang in there, we'll help as much as we can.

Ref 560P I'm assuming I'm looking at the right thing. Thanks for all the help. Tues I'll call my dr in ca. and see if they send my test results when I did last. As for now I have to get set up with someone else here in wa. and see if they can do another sleep study since things have changed. Slept for 7 hours today even though it was from 6 in the morning to about 1300. Woke up with my chest feeling tight and my heart feeling like someone beat the crap out of it and bruised it. Has me worried.

coastie76 wrote:Ref 560P I'm assuming I'm looking at the right thing. Thanks for all the help

the equipment to select has all the words "system one" "60 series" and "auto" in it.

same for the humidifier,... look for system one and 60 series.

The humidifier says system one htd humid, DOM ref DS6HFLG. The pump says REMstar auto, DOM ref 560P. That's all it says besides the Sn and at the very bottom 3.xx does this help?

Your humidifier is the same as mine.
The 560 is a very nice capable machine.

So now we know it is a Respironics machine.
See about getting either Encore or SleepyHead so you can get the data.

PM to pugsy to ask for help getting the software. Mention your computer type (Mac or Windows) and she'll help you figure it out.

Once you have that going, post a report showing the AHI breakdown and the pressure levels and we'll go from there.
There's a link in my signature block that shows how to do it.
As soon as you get the sleep study we can see where you started and, with the new reports, where you are now.

Great progress!

coastie76 wrote:The humidifier says system one htd humid, DOM ref DS6HFLG. The pump says REMstar auto, DOM ref 560P. That's all it says besides the Sn and at the very bottom 3.xx does this help?

please see my previous messages about what equipment to select for your profile.

Oh, man. You haven't been very well-served by the people who are providing you with medical care.

It's hard to know where to begin to educate you about what's going on with you. I can tell you that, once you have more information about your condition, and what your pressure needs might be, it will be extremely simple to start experimenting (cautiously) on your own with gradual pressure changes. You have a machine that can be set to fixed pressure ("CPAP," for Continuous positive airway pressure) or variable pressure ("APAP," for Automatic positive airway pressure). I gather it's set to fixed pressure?

With a machine set to auto, the 560P is going to give you a lot of data about what's going on with your breathing, although perhaps not as much as a second sleep study (depending on how competent the person administering the study is).

If increased pressure is giving you aerophagia, sleeping on a bit of an incline might help. Are you on board a ship right now?

I tried installing those programs on the wife's computer but I don't have windows xp. I have windows 8 I think is what she said. I'm on duty today so yes I'm on the ship. Didn't sleep much last night. The wife did a little test and monitored me both with the machine and without and she said I stopped the same amount and I'm not choking. I'm just not breathing and then all of a sudden wake up and gasp for air every few minutes so I think I developed central apnea some where along the line. Story of my life. Not sure how that happened. Would I be able to just plug in the sd card to the computer?

Yes, you can just plug the card into the SD slot. I have the same machine as yours, and I'm running Windows 8.1 so Sleepyhead software will work with your machine.

Please remember that you need to breathe normally at all times, with or without the machine. As Den said, the machine helps prevent apneas by splinting your airway open. It's not a ventilator that breathes for you. It starts when it senses your breathing and sometimes it will take several breaths from you to sense the breathing so don't worry if it doesn't start up immediately. Alternatively, you could turn it on manually - just push the knob.

To have the correct equipment show in your profile this is what you need to choose with the 560 machine

Machine....PR System One 60 Series Auto CPAP....the 60 series is important part of the model name.

Humidifier...PR System One 60 Series heated tube humidifier with heated tube (even if you aren't currently using the optional heated hose)

Right now your current humidifier choice won't even work with the machine choice you are current showing. You have chosen the model 550 machine and you have a model 560 machine (the newest model).

Check out my signature line for information on how to use the software.

coastie76 wrote:I tried installing those programs on the wife's computer but I don't have windows xp. I have windows 8 I think is what she said. ...

You don't need Windows XP for the software. Encore runs nicely on Windows 8 as does SleepyHead.
Send a PM to pugsy who has posted to this thread for help in getting the software installed correctly.