On the right track?

New member, hello to all and thanks so much for the upcoming and last couple months of browsing.

My Sleep Study Doctor ran all sorts of test including the study and a chest x-ray. On my follow up visit he said that I had 22 episodes an hour and my machine pressure should be at 16. He also said that my lungs looked normal on the x-ray. At that time I explained that I felt the pressure was too high. I was having problems with bloating and chest pains also mask leakage blowing raspberries on my cheeks and keeping me awake. He asked if I knew how to lower the pressure on my machine and when I said no he wrote a script to lower to 10 and also for a new mask. He asked that I call in every couple of weeks to discuss new pressures and see you in three months. That’s it.

Now that I am somewhat educated, thanks to this forum, I will have plenty to talk about during my next follow-up visit. I’m sure that because I am a new patient he must have felt there was no use in trying to overload me with info too soon. He could probably sense that I was ready to give up on treatment because of a little discomfort not realizing the consequences. I like him for that and will thank him when I see him next.

That said.
I feel that a pressure of ten could not be enough if my study recommended 16. I recall during my study the nurse said she would add one pressure for leakage. Maybe 15 would be ok. Since I really don’t know I have learned to set my own machine and experiment without calling out the DME to reset it for me. Thanks again forum. I started at ten an now up to 14 in a couple of weeks. Having a few problems at 14 and would like to back it down some.

The problem is,
I have no way of knowing how low I can go and have effective treatment. I don’t think I can upgrade to an Auto machine without a prescription. Also I am new and confused about them. It seems from the charts posted here that the data shows apneas occurring and my goal is not having any apnea. So that leads me to buying an Oximeter first to try and get stable before my next visit with the Doctor and then ask for recommendations on a better machine.

My machine is a REMstar M 100 with Cpap Full Face ComfortFull Mask. All very comfortable below 14 at this time.

First post and I will get better at it I hope.
Thanks to you all.

upforsleep wrote:The problem is,
I have no way of knowing how low I can go and have effective treatment.

upforsleep wrote:My machine is a REMstar M 100 with Cpap Full Face ComfortFull Mask. All very comfortable below 14 at this time.

Hi and welcome.

You know you really don't have any way of knowing anything except how you feel. Your machine offers nothing of use to you at all. It never will.

It is not data capable. You don't have to get an auto machine to get data capabilities. The M series Pro will give you some data and allow use of the software. It is a straight CPAP machine.

You can get an auto machine from cpap.com with an Rx for cpap. Doesn't have to be Rx for auto. DME is a different story.

If you want to be able to validate your treatment in any fashion you must get a data capable machine. Otherwise, you are driving blind and making changes blind.

Thanks for the info on RX and machines. I realize now that I assumed I would need a new script.

How about an Oximeter?
Will that help for now to determine what pressure I should use for now?

upforsleep wrote:How about an Oximeter?
Will that help for now to determine what pressure I should use for now?

Not to any measure of real effectiveness.
While it would/could show desats, if any, the absence of desats doesn't necessarily mean that things are all hunky dory.
To put it this way, if you did have some desats showing it might indicate less than optimal therapy
BUT
not everyone will desat to significant degrees with apnea events. So would you know if you aren't having any events or were you simply not having huge desats??

Though if it gives you peace of mine, then go for it but just be aware that it does have its limitations. If it were perfect we could diagnose sleep apnea with just the pulse ox. As it stands right now, it just gets us close sometimes.

You would be better served to put that money toward a data capable machine and the software to really see what is going on.

Pugsy wrote

You would be better served to put that money toward a data capable machine and the software to really see what is going on.

I totally agree with Pugsy's recommendation. Get a data capable machine (one that records/reports apnea/hypopnea/... events, system leak, system pressure, etc.) and the associated reporting software. I failed three years ago with a "compliance only" machine. I succeeded this year with a data capable machine, software, and the advice and recommendations that I found on this CPAPTalk forum.

I just wanted to clarify my thoughts here. I didn't want to mislead anyone about my perceived value of adding a pulse ox to our arsenal of tools to help us understand our therapy. I do think it is a very much valued tool. I just don't think that I would rely on it instead of having a data capable machine and the associated software. I would love to have a pulse ox myself and one of these days I will get one. Desats can occur unrelated to sleep apnea and I am a prime example of why overnight pulse ox results may not tell us all we need or want to know.

I am waking up with some headaches. I had 2 nights with pulse ox and no desats of significance. My AHI pretty much is always between 2-4 with very minimal leaks. I always have more apneas and few hypopneas. I was hoping to blame the headaches on desats but those 2 nights I didn't have any big groups of events and they were relatively uneventful nights. Well treated by the machines auto pressure. DME provided the pulse ox. So one of these days I will get my own pulse ox but in the meantime I have to look for other causes of the headaches. First suspicion is my poor old arthritic neck. Muscle tension/spasm most likely but that is for another thread and not hijack this one.

To upforsleep, please check your private messages for one from me.

I sent you a pm Pugsy, thanks,
I guess I'm a little hung up on the pulse oximeters. That is how I was first diagnosed with apnea.
While in ICU after receiving two more stints the nurse came in and put an oxygen mask on and said that I had stopped breathing several times falling to sleep. She said I had apnea and would have to have a follow up test to get diagnosed. My Heart Doctor actually told me not to worry about it. I said that I was already worried so he made the referral apt with the Sleep Doctor.
Now I have you all.
Not, like most friends and relatives who have practically written me off because I am always tired and never feel like doing much.
I have noticed some improvement. But that's another post and I hope to see much more. You all give me hope.
Thanks

upforsleep wrote:I guess I'm a little hung up on the pulse oximeters. That is how I was first diagnosed with apnea.

Understandable. The pulse ox has its place.
The problem is that you could still be having events but maybe not having the large drop in your O2 levels.
So you might not be getting optimal therapy and not know it.
If your O2 is great and you are feeling great and see marked improvement, well that is wonderful but if you aren't feeling so great despite good O2 levels, then where do you look?
No way to know if not feeling so great because of pressure needs or simply a leaky mask.

I don't remember if you mentioned how your were feeling? Since you aren't using the pressure that was titrated as being best (though often this number doesn't end up being what works best) then I would be concerned that therapy is still effective. It might be just fine and it might be less than optimal. Using a pulse ox alone to judge effectiveness might not cover all the bases that need to be covered since we don't always have big desats.
Just my opinion.

upforsleep wrote:My machine is a REMstar M 100 with Cpap Full Face ComfortFull Mask. All very comfortable below 14 at this time.

Hi,

I don't blame you for having issues at a pressure of 16. Most people are uncomfortable with regular CPAP at pressures above 14. I know I was. Some folks do better with some kind of exhale relief. Cflex or Aflex can help, but a bi-level machine might be what you want for the long run. You are going to want some kind of new machine because without getting data, you might as well be picking random numbers or shaking dice.

-john-

Just make sure that you don't get a machine that has the word PLUS in it's name for Respironics.

I like to get the newest product so that I feel I am getting the best out there. The new PR System One REMstar Auto CPAP Machine looks great. I have read about the software issue and wonder if patients can purchase the provider software.
I would like to keep it simple to read and understand the charts. I'm sure there is a learning curve to them.
If I can make what I have work for now I prefer to wait until I am sure about which machine to buy.

I raised my pressure back up to 16 last night and had a pretty good night. Some leakage and found that adjusting my head position would tighten the straps enough for me to fall back asleep. Raising my chin up away from my chest was most helpful.
Thanks

upforsleep wrote:The new PR System One REMstar Auto CPAP Machine looks great. I have read about the software issue and wonder if patients can purchase the provider software.

The new PR System from Respironics requires the Encore Pro 2.1. Provider only and nothing on the blackmarket yet that I could find. I would suppose that IF (big IF) your doctor would write and order or script for the software the DME might sell it but that would be a long shot.

If you wish to wait a little while to see if the "promised" patient version of the software materializes then get the PR machine, then that would sure be an option. It isn't like you aren't getting any therapy at all. Your basic machine will deliver good therapy, you just don't have any way to validate it right now. Can't say as I blame you for wanting the latest machine. I also wish to try it but I am waiting till the software is available. The information available on the LCD screen doesn't suit my needs. It does suit other peoples needs though.

BUT the information on the LCD screen that does show is still much more than what you are getting now which is nothing. So...your body, your therapy and your choice. I believe that it shows the 7 and 30 day averages for AHI and pressure and leaks. These can be reset to zero each night to look at individual nights.

I don't know how long you have been using your machine. It might be that if you are doing well (feel good) at the 16 cm pressure and you are using the pulse ox to help validate things, then you probably could wait a little while and explore your various options.