Start me up!!!

Rogue Uvula · Post by **Rogue Uvula** » Thu Aug 19, 2010 9:15 pm

OK, I am starting to get pretty excited about this. My CPAP system (as shown below) should arrive and I hope to set everything up and get my first night of CPAP therapy tomorrow!
I will be seeing a sleep specialist on Wednesday, so that gives me 5 nights of experience prior to meeting the doctor.

My original Sleep Study showed an AHI(TST) of 8.3, 5.4 RDI(Non-REM), and 25.9 RDI(REM).
The Events are listed as 1 Obstructive, 1 Central, and 41 Hypopnea to make a total of 43.

The Titration summary states Very Good Response with AHI=0 and RDI=4.3 (all at 8cm).
However, I had no REM sleep which is where my biggest problems seem to be, so I am concerned the 8cm is based on incomplete data and believe APAP data will be useful to the doctor.

I am thinking that the first two nights should be mainly about adapting to the mask/machine (comfort), and if that goes well, it would be good if I can bring in some useful data to the doctor (which would hopefully include some REM time). I do not know if these two objectives are mutually exclusive.

First things first:
1) Should I start out with CPAP or APAP for the first night?
2) What pressure (or pressure range) should I start with?
3) What do I need to do to insure that I am collecting data?
4) Any other tips I should use to optimize my first night?

I'll be following up with how my first night went and soliciting suggestions for Saturday night on Saturday.

PS-I will be out of contact most of tomorrow, but expect to get home around 5 or 6 to read your responses and follow up on any questions.

Thank you so much for your help with this.

chunkyfrog · Post by **chunkyfrog** » Thu Aug 19, 2010 9:23 pm

Your avatar is hysterical!
Sleep tight; but remember, it might take a while to get it 'right'.

elena88 · Post by **elena88** » Thu Aug 19, 2010 9:37 pm

Rogue Uvula"]OK, I am starting to get pretty excited about this. My CPAP system (as shown below) should arrive and I hope to set everything up and get my first night of CPAP therapy tomorrow!
Its nice to see someone so excited about this!
I will be seeing a sleep specialist on Wednesday, so that gives me 5 nights of experience prior to meeting the doctor.

My original Sleep Study showed an AHI(TST) of 8.3, 5.4 RDI(Non-REM), and 25.9 RDI(REM).
The Events are listed as 1 Obstructive, 1 Central, and 41 Hypopnea to make a total of 43.

The Titration summary states Very Good Response with AHI=0 and RDI=4.3 (all at 8cm).
However, I had no REM sleep which is where my biggest problems seem to be, so I am concerned the 8cm is based on incomplete data and believe APAP data will be useful to the doctor.

I am thinking that the first two nights should be mainly about adapting to the mask/machine (comfort), and if that goes well, it would be good if I can bring in some useful data to the doctor (which would hopefully include some REM time). I do not know if these two objectives are mutually exclusive.

First things first:
1) Should I start out with CPAP or APAP for the first night?
There is no way to know if you will get some Rem time unless you happen to wake up while you are dreaming..
If you are not sure of your titration pressure, I would go with apap, two below and two above suspected titration pressure, unless you
feel six is too low, and you are suffocating, then just put it at eight to ten maybe or seven to ten..
2) What pressure (or pressure range) should I start with?
3) What do I need to do to insure that I am collecting data?
Just make sure your card is stuck securely in the back of the machine

You can try your epr feature too, I love mine. If you have trouble breathing against the pressure set it higher..

4) Any other tips I should use to optimize my first night?
Just be comfy, do you have strap sofites yet or padacheeks for your mask straps?
Dont change a bunch of stuff, just act like its a regular night, watch tiv or read, just relax with the
mask on.. no spicy food or alchohol before bed..

I'll be following up with how my first night went and soliciting suggestions for Saturday night on Saturday.
Okay, best of luck!

PS-I will be out of contact most of tomorrow, but expect to get home around 5 or 6 to read your responses and follow up on any questions.

Thank you so much for your help with this

jweeks · Post by **jweeks** » Thu Aug 19, 2010 11:15 pm

Rogue Uvula wrote:The Titration summary states Very Good Response with AHI=0 and RDI=4.3 (all at 8cm).
However, I had no REM sleep which is where my biggest problems seem to be, so I am concerned the 8cm is based on incomplete data and believe APAP data will be useful to the doctor.

I am thinking that the first two nights should be mainly about adapting to the mask/machine (comfort), and if that goes well, it would be good if I can bring in some useful data to the doctor (which would hopefully include some REM time). I do not know if these two objectives are mutually exclusive.

Hi,

I would hope that a sleep doctor or DME company is guiding you on this. If not, then all you have are some Internet opinions, so your milage may vary... I think you are right in that you should focus on adapting to the mask and machine for a few nights. I would consider doing the simplest things first, and then going to the more complex features later on. Since 8cm is a fairly low pressure, set the machine on straight CPAP at 8cm with no ERP or CFLEX. Run that way for about a week or 10 days. Look at your AHI each day. If things go well, you could consider saying on CPAP, or moving to APAP with a range of something like 7cm to 11cm. Or you could try the CFLEX or AFLEX options. If you do change things, change only one thing at a time, and let it run for a few days between changes.

-john-

Rogue Uvula · Post by **Rogue Uvula** » Fri Aug 20, 2010 7:14 am

chunkyfrog wrote:Your avatar is hysterical!
Sleep tight; but remember, it might take a while to get it 'right'.

Thanks! I consider it a real "find"!
(It is the album cover from King Crimson - In the Court of the Crimson King - 1969)

Rogue Uvula · Post by **Rogue Uvula** » Fri Aug 20, 2010 7:35 am

elena88 wrote:Its nice to see someone so excited about this![/color]
If it improves overall health, it is worth getting excited about! I have some other medical issues and getting "well rested" has got to assist in my body's ability to deal with those issues!
That, and a good dose of blissful ignorance!!!

First things first:
1) Should I start out with CPAP or APAP for the first night?
There is no way to know if you will get some Rem time unless you happen to wake up while you are dreaming..
If you are not sure of your titration pressure, I would go with apap, two below and two above suspected titration pressure, unless you
feel six is too low, and you are suffocating, then just put it at eight to ten maybe or seven to ten..
On the REM, I'm thinking that since they obtained VG response at 8cm based on NonREM events, if I have several events at 9.5cm from the Auto, that might reasonably infer that these events were in REM. Is this anywhere near right? Just how clueless am I?
I'll fire it up at 6-10 and see what comes of it.

3) What do I need to do to insure that I am collecting data?
Just make sure your card is stuck securely in the back of the machine
Cool - I can handle that
You can try your epr feature too, I love mine. If you have trouble breathing against the pressure set it higher..
I'll definitely switch it on. Hard to imagine why someone wouldn't use it, but what do I know?

4) Any other tips I should use to optimize my first night?
Just be comfy, do you have strap sofites yet or padacheeks for your mask straps?
Dont change a bunch of stuff, just act like its a regular night, watch tiv or read, just relax with the
mask on.. no spicy food or alchohol before bed..
Don't have any of that - I guess I'll experience the raw mask the first night and see how that works.
Okay, best of luck!
Thanks for the help!

Rogue Uvula · Post by **Rogue Uvula** » Fri Aug 20, 2010 7:55 am

jweeks wrote:
Rogue Uvula wrote:The Titration summary states Very Good Response with AHI=0 and RDI=4.3 (all at 8cm).
However, I had no REM sleep which is where my biggest problems seem to be, so I am concerned the 8cm is based on incomplete data and believe APAP data will be useful to the doctor.

I am thinking that the first two nights should be mainly about adapting to the mask/machine (comfort), and if that goes well, it would be good if I can bring in some useful data to the doctor (which would hopefully include some REM time). I do not know if these two objectives are mutually exclusive.
Hi,

I would hope that a sleep doctor or DME company is guiding you on this. If not, then all you have are some Internet opinions, so your milage may vary... I think you are right in that you should focus on adapting to the mask and machine for a few nights. I would consider doing the simplest things first, and then going to the more complex features later on. Since 8cm is a fairly low pressure, set the machine on straight CPAP at 8cm with no ERP or CFLEX. Run that way for about a week or 10 days. Look at your AHI each day. If things go well, you could consider saying on CPAP, or moving to APAP with a range of something like 7cm to 11cm. Or you could try the CFLEX or AFLEX options. If you do change things, change only one thing at a time, and let it run for a few days between changes.

-john-

I would be following the DME's and doctor's instructions to set it for CPAP at 8, since that is what the prescription was written for. The doctor who Rx'ed teh CPAP is great with the general stuff, but seems to rely too much on the DME/Sleep Lab (they are the same entity) for apnea issues. The DME wrote the script and she signed it.
On Wednesday, I will see a specialist from Sleep Fusion in Atlanta, who I expect to react to whatever information I can give her. I will probably get my wrist slapped for taking it upon myself to play with the settings, but I have found getting my wrist slapped to be one of the most efficient ways to survive modern life. Also, I want to make an impression as a proactive partner in my treatment; not just another patient wanting to be told what to do.

So, which is more comfortable? CPAP or APAP? It is probably not that simple, is it?

Emilia · Post by **Emilia** » Fri Aug 20, 2010 8:55 am

Chatted with my doctor's office today. They are thrilled at my pro-activity with my health/therapy. When I told them that I ordered the brand new DeVilbiss Intellipap Auto w/Smartflex, they were very happy, but they did say they didn't have that software. I told them, ah, but I did!! So, I will be providing them my reports. No gasps; no "You can't do that!"; instead total support. How cool is that?

Since the DeVilbiss also has a port specifically for a Nonin oximeter to be plugged into it, I asked if they had that software (too expensive for me to buy) and they do since it is a pulmonary doctor. So... down the road, I will plug in an oximeter and bring that data to them to read.

Good luck! My titration report suggested a cpap setting of 8, but my doc recommended apap of 6-10. Apap may be more comfortable, but from what I've read on this forum, some folks do better with a consistent pressure. I think those with a high pressure may find the auto provides some relief. This stuff is soooo individualized. At least we will have the ability to switch if we need to!

snuginarug · Post by **snuginarug** » Fri Aug 20, 2010 9:18 am

I just wanted to say, not only is your avatar really cool, but your name is great too, it made me laugh.

jweeks · Post by **jweeks** » Fri Aug 20, 2010 5:27 pm

Emilia wrote:Good luck! My titration report suggested a cpap setting of 8, but my doc recommended apap of 6-10. Apap may be more comfortable, but from what I've read on this forum, some folks do better with a consistent pressure. I think those with a high pressure may find the auto provides some relief.

Emilia,

The key is to look at the pressure levels on data reports. If the pressure is staying at about the same level, try running it on CPAP and see if you feel any better. Some people are sensitive to APAP pressure level changes. If your pressure is bouncing up and down, or makes a larger shift throughout the night, then you really do want to be on APAP. The idea is that you can get the lower pressure when you are not having events, and then ramp up at times when you need it. Also watch the bottom pressure level. If the APAP has to ramp up a long way to get where it needs to be, then you might as well move up the lower number so it can react to events more quickly.

I think you can run for a while on APAP, watch your data, and then see how you feel. If you feel good, then it is perfectly valid to leave well enough alone. If you don't feel good, then you have a body of data built up for more analysis.

-john-

Rogue Uvula · Post by **Rogue Uvula** » Sat Aug 21, 2010 3:30 pm

Overall, it was a good night!
Thanks for the replies and support!
Sorry I didn't get the chance to reply yesterday. Without the info you supplied, I could not have gotten the equipment properly setup last night.

I set the machine on Auto with a range of 6.0 to 10.4

The basic data showing on the display from last night is:
5.7 hours
Mask Fit - Good
AHI - 2.2

The more advanced screen shows:
Pressure - 8.8 What is this - the maximum? the average?
Leak - 3.7L/Minute How good (or bad) is this? I definitely played with and reseated the mask a few times
AHI - 2.2
Total AI - 2.0
Central AI - 1.7 Any help with interpreting the significance of these numbers is appreciated. I know AHI-2.2 is a very good start, but don't understand how the Central and Total AI values factor in.
Run Hours - 8.6

This data needs to be taken with a grain of salt because there were several atypical circumstances:
I had surgery yesterday on my eyelids and was on pain killer (1 ea. "Tylenol 3" every 4 hours), I had to elevate my head so I slept in a recliner on my back (I always sleep on my side), and I was whipped by the time I got the CPAP gear setup, and fell asleep while I was using an ice pack before I started the CPAP. Nonetheless, it looks like I got pretty good results.
I'll be in the recliner for the next two nights before I can try CPAP in a normal sleep configuration.

Thanks!
Kurt

Rogue Uvula · Post by **Rogue Uvula** » Sat Aug 21, 2010 5:48 pm

snuginarug wrote:I just wanted to say, not only is your avatar really cool, but your name is great too, it made me laugh.

Thanks!

brazospearl · Post by **brazospearl** » Sat Aug 21, 2010 7:37 pm

Rogue, it looks like you're off to an excellent start! Keeping the mask on all night and AHI under 5 is quite an accomplishment for a first night, especially since you had the difficult circumstances of your surgery to deal with. Leave your settings where there are, relax, and enjoy your sleep!

Rogue Uvula · Post by **Rogue Uvula** » Sun Aug 22, 2010 8:00 am

brazospearl wrote:Rogue, it looks like you're off to an excellent start! Keeping the mask on all night and AHI under 5 is quite an accomplishment for a first night, especially since you had the difficult circumstances of your surgery to deal with. Leave your settings where there are, relax, and enjoy your sleep!

Thanks!
Judging by the data, things went south last night.

Here is my data (Day1/Day2):
5.7hrs/9.0hrs
Pressure= 8.8/8.8
Leak= 3.6/7.2
AHI= 2.2/10.5
Total AI= 2.0/10.3
Central AI= 1.7/9.3
Run Hrs= 8.6/19.2

In any case, I can leave the recliner and get back to my normal bed sleeping (on my side) routine tonight, so I'll reset the machine and start collecting data a new.

Any advice, comments, or random thoughts welcome!

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