Frustrated

Hello, all!

Love this site -- so full of good, grassroots info!

I had my first sleep study 6/18/10 and the second 7/9/10. Received my CPAP machine and first mask on 7/28/10. My AHI is 19.5, desaturation 86% (I don't understand what that means) and my PLM index is 35.2.

I have gone through four face masks, my sleep has gone from 10 hours of pre-CPAP sleep that left me exhausted to 4 hours of CPAP sleep that leave me exhausted, mentally confused, poor at getting my work done. My masks just don't seem to stay fitted. I follow all the instructions to begin my night's sleep, but before long, the leaks start, I tighten and tighten (I have a bruise on my nose) and after about 4 hours, I give up and sleep for a couple of hours without the mask -- which I know is dangerous.

My pressure is set at 18, ramping up over 30 minutes. And I am miserable.

Sorry to begin my association with this site with complaints -- but it is what it is. Any suggestions?

Smiles, Paula

Ouch! a pressure of 18 is quite high and will be much harder to get used to.

Believe it or not the mask shouldn't need to be tightened so much that it causes bruises and pain.

"desaturation 86% (I don't understand what that means)" ... Its the amount of oxygen in your blood while sleeping, yours is on the low side. Ideally it should be no less than 92% while sleeping and preferably above 95%.

Which mask model are you using? The picture makes it very hard to tell.

Unfortunatley you have a machine that gives you NO detailed data. All it will tell you is how long and how often you used it. That will keep insurance companies happy BUT will not help you with your therapy.

I would try to trade the machine for a fully data capable one like the Elite or the Autoset. With those 2 machines you can get software and a card reader to tell you what exactly is happening in your sleep. If you don't want to buy the software and card reader, your DME can read the card for you. Hopefully they will give you copies of the data. It may cost you a bit for them to print you copies.

Looks like you are still within the 30 days so it should be possible to get a fully data capable machine, even if you have to get yoru doctor to write a more specific prescription.

With that information, people here will be able to be more help to you.

Mirage Quattro full face mask and ResMed Escape II CPAP machine with heated humidifier.

Thanks for your comments. Feels like I am not so all alone with this very unpleasant issue. I asked the supplier about a machine with data capability and he told me that when I send in the card at the end of the month they will have lots of data for me. Needless to say, I would prefer to be able to pull it up myself.

If in fact your machine is an Escape model, the only data ANYONE (even the DME) can get out of it is how often and how long you used it. There will be no detailed data. That model just does not provide full data.

Paula389 wrote:Thanks for your comments. Feels like I am not so all alone with this very unpleasant issue. I asked the supplier about a machine with data capability and he told me that when I send in the card at the end of the month they will have lots of data for me. Needless to say, I would prefer to be able to pull it up myself.

They lie - there is nothing worth mentioning kept on that machine but they are making lots of money off you. You need an S8 Elite to get any data worth mentioning off it. Bring it back and act like a sleep deprived angry bitch and scream at them until they change it.

If I am correct, the Escape does not have EPR (exhalation pressure relief), which, if you had it, would lower the pressure slightly to allow you to exhale.
When I found out my DME planned to set me up with an Escape, I notified my doctor that I had trouble exhaling in a high wind, and requested a machine with that feature.
He wrote the RX for that specification, and I wound up with an S9 Elite. I would suggest you ask your doc to write an amended RX because you are having trouble exhaling.
Hopefully, that will get you traded up to a better machine.

An Escape II at 18 may well be a prescription for frustration. Keeping any mask well sealed at that pressure is major task.

According to Resmed, http://www.resmed.com/us/products/s8_es ... c=patients the Escape II does have EPR (exhale pressure relief) -- I suggest you try setting it at 3 to see if it helps you.

People who need an an inhale pressure of 18 often do better on machines that give them lower pressure for exhaling. That also helps with keeping the seal. These machines are called bi-level machines, BIPAP and VPAP being the brand names of two of them. Your Escape's EPR gives you limited exhale pressure relief -- and suspends it if you have apneas or hypopneas -- real bi-level machines have a larger difference between inhale pressure (IPAP) and exhale pressure (EPAP) and do not suspend it. Unfortunately, due do insurance limitations, sometimes failure at a fixed pressure machine like the Escape has to be proven before you get a chance to try a bi-level. So, don't get too discouraged if you fail with the Escape -- bug your doctor and DME incessantly -- till they understand clearly that the Escape II has failed you, and you need to try something else. Don't go demanding a bi-level but do make it very very clrear how unsatisfactory the present therapy is. You many need to got through a bi-level titration before they Rx a bi-level machine.

O.

Paula389 wrote:My pressure is set at 18, ramping up over 30 minutes. And I am miserable.

Paula,

I am not surprised given this statement. Most humans would find CPAP at 18 to be almost impossible to deal with. And a ramp of 30 minutes will make it nearly impossible to adjust your mask. You are well into BiPAP territory. You most likely need a BiPAP prescription based on a titration study, and you need to be able to learn to start that prescription without using the ramp. Even with the right machine, BiPAP that hits 18 on inhale is still going be an effort to get working just right. I went through a number of masks before finding that the Swift LT worked for me. The ramp feature is counterproductive because the mask is far more likely to leak at full pressure, but you would need to be in bed for 30 minutes before you get to full pressure. Rather, you want full pressure right away so you can adjust your mask just as you go to bed.

-john-

Welcome, Paula! The Anti-Leak strap made by Karen at Pad A Cheek may help you with the Quattro mask: http://padacheek.com/PAC_AntiLeak_Strap.html. It gets very good reviews from forum members, and it may allow you to wear the mask a bit looser. She makes other nice products as well, including a nose bridge protector.