I'm Baaaaaack.....and with questions

So.

Haven't been on here in quite a while. Up until last night, I had been off CPAP for over 2 years. Some backstory.

In 2008, I was diagnosed with OSA after doing a sleep study at the request of my ENT. I had gone in complaining of snoring and walked out with an AHI of 27 and a lowest saturation level of 84%. One titration study later and I was cruising a RemStar Pro. For about 2 years.
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The problem was, I didn't tolerate CPAP very well. I'd say 2-3 out of 7 nights I made it through the night. The others I'd pull the mask off between 3 and 4 and forget about it. Problems? Well, there was the rainout. A hose cover helped, but I couldn't adjust humidity above 3. Never tried a heated hose. What else? Constant mask fit problems. Leaks like the Titanic after the iceberg. Tried extra straps, different masks, Macks on the nasal pillows and mask surround. Everything. Never got one of those Pap Caps though. The leaking / Farting noises would wake me and my wife up all night. It was pretty bad. What else.....super dry mouth and lips. Solved by switching to a nasal pillow, but then my mouth would open and wake up the wife. Never tried a chin strap.

So I vowed to lose weight, which most people said would help. 35 pounds later, and it did. I slept well, no apneas or snoring at all, felt great, had good energy.

Then this past summer, we got word we were moving 1500 miles away. Oh, and we were wanted in 6 weeks. Uh, what?!?! Needless to say stress, selling one house, buying another, looking for two schools, etc., took it's toll on eating and exercise habits. 15 of those 35 have crept back on and the snoring crept back, followed by the apnea.

Last week I got the flu and sore / swollen throat. Apnea was intense. Could not breathe at all. got no more than 20 minutes of uninterrupted sleep at a time for over a week. Finally yesterday I had enough and went to the doctor.

I'm now a proud owner (renter) of a S9 Escape Auto. With it came a heated hose (yay!), chin strap and Pilario. First night was a raging success! Slept the whole night with it, not without a few issues. But no rainout, no leaks, no dented, red face, etc.

Now...my last machine could read data and I had a program to do so. I'm starting to think I got stuck with a machine that only tracks compliance info. I see no way to turn off EPR. I see no way to set humidity level other than "auto". Etc. Do I need the AutoSet? I do not have a problem going back to my Doctor and demanding a machine that I could read the data with. Also, where do I get the program to do so? Understanding the data is essential. There is no way to receive treatment without it.

Anyway, wanted to say hi and get some opinions on the machine.

Thanks!

Needsdecaf wrote:.

Now...my last machine could read data and I had a program to do so. I'm starting to think I got stuck with a machine that only tracks compliance info. I see no way to turn off EPR. I see no way to set humidity level other than "auto". Etc. Do I need the AutoSet? I do not have a problem going back to my Doctor and demanding a machine that I could read the data with.

Thanks!

I think you pretty much summed up the solution to your question. The Escape model is adequate for anyone who is absolutely not interested analyzing their data or changing their settings (really you can't change EPR?) However, for anyone who wants to get involved in their own therapy it is a total dead end. I suggest you go to your doctor and DME to tell them you are disappointed in their machine choice. The DMEs love to sell the Escape model because they make an extra fifty or so bucks off the deal, leaving the hapless patient to deal with a compliance only machine which was crippled from conception.

You definitely got a machine that shows no data. (However, you should be able to change EPR). Since you are renting, try to exchange the machine for the S9 Elite or Autoset (Not Escape Auto).

OK, got into the clinicians menu on the machine.

EPR Off..???
Pressure 6-9 (makes sense, my titration indicated either 7 or .
Last night's results: Pressure 8.8
AHI 0.7

I bumped up the pressure to 9.6, I don't know, an irrational fear. Is it ok that I was running close to the upper limit? I turned on the EPR to 1, as I liked that on my other machine. I also noticed that the mask was a bit noisy. Hope this helps.

Needsdecaf wrote:I bumped up the pressure to 9.6, I don't know, an irrational fear. Is it ok that I was running close to the upper limit?

Hi,

As a general rule of thumb, you want the lower pressure to be within 1 or 2 centimeters of your 95% pressure (essentially, your average pressure). The upper number doesn't matter too much as long as it is high enough to give you some headroom to accommodate peak pressure needs. That is where a data chart would be handy so you can see if you are maxing out on pressure. The lower number is more important to keep within 1 or 2 of your 95% pressure. If the lower number is too low, the machine will take too long to ramp up, and it will miss events that might otherwise be treatable.

Note that your 95% pressure might change over the next two weeks or so as you get adapted to the machine. It could drift a little higher or a little lower, so it is OK to keep the pressure window a little wider right now.

-john-

jweeks wrote:
Hi,

As a general rule of thumb, you want the lower pressure to be within 1 or 2 centimeters of your 95% pressure (essentially, your average pressure). The upper number doesn't matter too much as long as it is high enough to give you some headroom to accommodate peak pressure needs. That is where a data chart would be handy so you can see if you are maxing out on pressure. The lower number is more important to keep within 1 or 2 of your 95% pressure. If the lower number is too low, the machine will take too long to ramp up, and it will miss events that might otherwise be treatable.

Note that your 95% pressure might change over the next two weeks or so as you get adapted to the machine. It could drift a little higher or a little lower, so it is OK to keep the pressure window a little wider right now.

-john-

Thanks.

I read the machine this morning and it said last night's pressure was 9.2. Seems as if both nights it's hovering just below the upper limit. I also turned EPR on to 1. Think I'll leave it alone and see if it maxes out before I do anything else.

Also, remind me, is it normal to have mild headaches when getting used to CPAP? I can't remember.

Mild headaches normal - no, not for me anyway.

You got a brick - a machine with no data - run, don't walk, back to that DME & demand a fully data capable machine. Below is a link to help you choose a good machine.

http://maskarrayed.wordpress.com/

Don't let the DME win on this, the data will help you with your therapy, what little data you get from the brick may help some, however not enough, but you deserve a much better machine.

Jen

Needsdecaf wrote:Also, remind me, is it normal to have mild headaches when getting used to CPAP?

Hi,

You shouldn't be having headaches due to CPAP. Morning headaches or morning fog is often a sign that you are not getting good sleep. It could be that you still have your non-CPAP hang-over wearing off, or it could be that you are still not getting really good treatment. That is hard to tell right now.

How were you feeling in the morning before CPAP? If you were feeling really awful, perhaps just having a headache is a big improvement? If you are feeling better overall, perhaps you will continue to feel even better over time. I know that I felt like the walking dead before CPAP, so when I simply felt awful the first 2 weeks on CPAP, awful was a huge improvement. These days, when I have an occasional day where I feel like a zombie, that feeling is teeny tiny compared to how bad I felt back in the old days. But since I feel so good most of the time, I really notice it when something is even a tiny bit off with my sleep. Once you get on CPAP, you are much more aware of your sleep and how you feel, and being in tune with yourself means that you notice more of the smaller details about how you feel.

-john-

jencat824 wrote:Mild headaches normal - no, not for me anyway.

You got a brick - a machine with no data - run, don't walk, back to that DME & demand a fully data capable machine. Below is a link to help you choose a good machine.

http://maskarrayed.wordpress.com/

Don't let the DME win on this, the data will help you with your therapy, what little data you get from the brick may help some, however not enough, but you deserve a much better machine.

Jen

Yeah, I know what a brick is. I feel kind of annoyed, because I got the machine at the Doctor's office. I asked the nurse, "does it record data". She said "yes". I saw an SD card and thought, OK, I'm golden.

Wrong.

Since I didn't get it from a DME, I think the doctor will work with me on this rather than fight me. We'll see.

When I was getting headaches the next day, it was because my minimum pressure was too low.

Kicked the minimum up higher, and the daytime headaches went away.

Regards, Nate

Your body was used to being strangled over and over all night long and adjusted to it as well as it could. Once you stop this, your body may be sort of chemically out of balance until it readjusts. It's a bit like stopping smoking or drinking. You might also not sleep well until your brain gets used to having the alien strapped to your face. You might get headaches or various other symptoms.

However, I'll agree that headaches are often a sign of your CPAP not eliminating your apnea.

No headache this morning. I think it was a combination of adjustment, coming down off of being sick, and finally sleeping after a week of the worst apnea I have ever had. That and I think I got into a cycle of ibuprofen dependence from taking it so often while I was sick.

Good news - another 8 hour night and an AHI of 0 according to the machine. Yay! This is definitely the best fitting mask I have used, I actually woke up on my side and the mask wasn't leaking. But gosh, it really is loud.