Encore report...when < 5 AHI is not enough

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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roster
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Re: Encore report...when < 5 AHI is not enough

Post by roster » Thu Jul 02, 2009 7:22 am

Pugsy wrote: ......... I could very well be rolling over onto my back but I don't think they are strictly positional events. On my list of things to do is find something that will keep me on my side. ......
Pugsy,

You made some long posts showing you have many thoughts about your therapy. Learning the hard way, I found keeping it simple usually yielded the best results.

If it were me, I would address sleeping on the back before I changed anything else. "Change one variable at a time."

We can't tell what positions we are in when sleeping because, uh yeah, we are asleep.

A small backpack kept me on my side and eventually trained me to the point I no longer need it.

Regards,

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I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related

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5aces
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Re: Encore report...when < 5 AHI is not enough

Post by 5aces » Thu Jul 02, 2009 8:14 am

While you reckon with the oximeter purchase,why not do a search on here for "digital video recording sleep"

Many options to choose,from a simple infrared webcam to a dedicated security watch system.

I set up a system and found the captured data useful,if not somewhat entertaining!

Since you are a malware sleuth,I am certain this will aid your inquisition into your sleep habits.
Last edited by 5aces on Thu Jul 02, 2009 8:22 am, edited 2 times in total.
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Pugsy
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Re: Encore report...when < 5 AHI is not enough

Post by Pugsy » Thu Jul 02, 2009 8:17 am

rooster wrote:A small backpack kept me on my side and eventually trained me to the point I no longer need it.
All this backpack would do for me is eliminate any need for any CPAP treatment. I wouldn't be able to sleep.

Yes, I know I have multiple "issues" most likely affecting the end result. Yes, I know it is best to address one at at time and I pretty much am trying to adhere to that philosophy as much as I can. Just because I mention several things doesn't mean that every night I dwell on each an every one of them. I have to have the leaks under control to give me reliable data (good or bad). Then I can systematically specifically address other issues as best I can.

I can't keep it simple. It simply is not in my nature. My medical background and my known medical issues preclude me from being able to compartmentalize. I can't help but "what if" things. I don't obsess over them though. I just realize that things are intermingled and deal with it.

My titration study was done pretty much 100% supine. I have nothing to tell me if I had less events on my side. I am more than willing to try to stay off my back just to see if it helps things but so far not much luck getting that done. Last night I added a large pillow behind the large foam wedge in an attempt to keep me on my side. I still woke up on my back. Murphy's law kicked in and I had a missing daily data night last night so I don't know what my data looked like. Last night I had increased my minimum pressure to 11.5 cm.

Mainly I mention my various issues to let other newbies know that there are any number of reasons why someone gets less than ideal results. Wouldn't it be nice if all we had to deal with were simply mask leaks instead of factoring in all this other crap? On the positive side of things. I feel very fortunate to be doing as well as I am. I don't have a problem with claustrophobia, I don't have problem with pressure varying and more importantly even a "bad" night is still better than before I started treatment.

I may be wrong but I just don't think my event clusters are related to position. I think they are related to REM stage sleep BUT I am certainly willing to keep trying to get off my back as much as I can just in case. The cold hard fact of life is that due to my neck, back and pelvic pain I have to move around. It is either that or no sleep due to pain.
And with that comment I will end another short novel.
I do appreciate your input though. I hope that you understand that I am not discounting what you suggest, merely stating the hurdles that I have to go through.
Brenda

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Re: Encore report...when < 5 AHI is not enough

Post by Pugsy » Thu Jul 02, 2009 9:03 am

Synergy Resp Care wrote:The type I use with my respiratory company is the respironics 920m or 920m plus, with download software by the name of profox. These can be quite expensive. If you have a local CPAP supplier such as lincare or apria that you are established with your dr can order an overnight oximetry and those companies will do them for free. Laura RRT
Sure looks like a nice unit. I did a quick check around and the best price I found was $699 but the software was $299. Ouch. No big name DME's around here to maybe get the doctor to order an overnight study just to satisfy my curiosity. So that likely is not an option unless more than my curiosity gets peaked.

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Pneumonym
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Re: Encore report...when < 5 AHI is not enough

Post by Pneumonym » Thu Jul 02, 2009 10:51 am

Pugsy,
Thanks for your comments and PMs, it is very helpful to me. It's all so new, yet I now know OSA has been a big problem in my life for a long time and I want to deal with it aggressvely. Reminds me a bit of my Hodgkins lymphoma (IIB) diagnosis in that sense - major symptoms went undiagnosed for years - believe it or not I looked forward to my weekly chemotherapy cocktail (Stanford V regimen, 6 i.v. agents given in an alternating cocktail plus continuous high dose oral prednisone). Same for the radiation that followed (essentially no side effect in that case tho').

My diagnostic PS was remarkable in that the O2 level was good almost the whole night, except for serious hypoxia coincident with the 5 episodes of REM and with A/H clusters. No need for fancy statistics to figure that one out .....

Last night I woke up twice during REM (remembered vivid dreams that were interrupted) to find that my jaw was slightly open and air was hissing out loudly. It was the sound that woke me up, first time this has happened but I'm still very early in this whole business. I thought my Leak and AHI were going to be lousy but the AHI was 4.5, and a bit better than last night (5.5), and leak was similar (25.7 versus 27.5 the night before). I'll work on the leak (headband) but it may not be much of a problem. The hissing and odd sensation in the mouth probably woke me up within a few seconds of onset.

I don't see my doc for the data review for almost 2 weeks but really want to raise the base from 4.0 to say 6.0 (don't want to seem uncooperative/noncompliant and get off on the wrong foot). Note that I did not have an overnight titration, just went straight onto the REMstar wide open. My 90% press. was 8.0 the last 2 nights, but that's an overestimate of the average I realize and not a good basis for setting the base. I'm pretty sure I can tolerate increased basal pressure and I want to be sure that those big hypoxias get dealt with efficiently. I don't really see a downside to raising it, do you?

Today I feel maybe a bit more tired than yesterday but still much much better than pre-CPAP. This forum is very encouraging to someone in my position. You guys are very proactive and questioning - that is just how it should be IMO. If the doc doesn't like it I'll just have to find another doc.
A heartfelt thanks to all those patient cpaptalk posters willing to share their exerience and knowledge with newbs like me.

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Pugsy
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Re: Encore report...when < 5 AHI is not enough

Post by Pugsy » Thu Jul 02, 2009 11:17 am

Pneumonym wrote:I don't see my doc for the data review for almost 2 weeks but really want to raise the base from 4.0 to say 6.0 (don't want to seem uncooperative/noncompliant and get off on the wrong foot). Note that I did not have an overnight titration, just went straight onto the REMstar wide open. My 90% press. was 8.0 the last 2 nights, but that's an overestimate of the average I realize and not a good basis for setting the base. I'm pretty sure I can tolerate increased basal pressure and I want to be sure that those big hypoxias get dealt with efficiently. I don't really see a downside to raising it, do you?
Personally I find that I don't feel like I am getting enough air at 4 cm. That is why I never used the ramp.
Most people here seem to report the same thing. Heck even during the titration study they started me out with 5 cm.
I don't see any downside to raising your minimum just a bit but I am not a doctor. I just don't have any qualms about screwing around with my own settings. Since your 90% average isn't very high maybe 5 or 5.5 minimum and see what happens. It may be all that is needed to help prevent a few more events and help you feel a little better. Just my opinion for what its worth.

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Pneumonym
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Re: Encore report...when < 5 AHI is not enough

Post by Pneumonym » Thu Jul 02, 2009 11:53 am

I agree. I have become sensitive to the sensation of narrowing of the pharynx in different positions in bed and also feel that 4 isn't enough as a background pressure. My basal O2 may look fine but I'm low on "airway reserve" (analogy with cardiovascular medicine) which is a factor in my sudden and massive hypoxia attacks I'm sure. Besides I'm a scuba diver and rather like the feeling of positive pressure aiding inspiration, but one can go too far obviously.

Two points for you from this newbie:

1) don't worry about longish posts. Readers can use their discretion as to what to read and what to ignore. I suspect I'm not the only one who enjoys yours, whatever the length ...
2) I am a Ph.D. scientist who's been in pharma research and development for a quarter century or so, after a couple of postdocs. I spend my days working on large data sets (clinical outcome data in oncology + biomarker results) trying to understand what it all means. For example, is there a way for us to better predict which patients will experience a longer stable disease period (or heaven forbid partial or complete response) when given a drug that blocks the production of blood vessels in their tumor? Same for time to tumor progression/overall survival. "Personalized medicine" is the future of pharma IMO, there are plenty of examples already (Ras mutations and response to EGF inhibitors in colorectal as a recent example). The name of the game is to find variables that allow you to better predict treatment outcome, and in principle the more the better (as long as they are independent, e.g. by multivariate Cox Proportional Hazard). Beware the biomarker that is just a surrogate for another one - and so complicates the picture without adding any value. You are right that OSA is complicated, nothing in biology isn't IMHO. It is of course true that we have to be as systematic as possible in our "experiments" (one variable at a time), but I encourage you in your efforts to consider all of the variables for which you have data. You're way ahead of me - I'm still in the data-starved stage (trying to be a little patient and not succeeding very well ....).
Best, Charles.
A heartfelt thanks to all those patient cpaptalk posters willing to share their exerience and knowledge with newbs like me.

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Re: Encore report...when < 5 AHI is not enough

Post by Pugsy » Thu Jul 02, 2009 12:11 pm

Pneumonym wrote:don't worry about longish posts. Readers can use their discretion as to what to read and what to ignore. I suspect I'm not the only one who enjoys yours, whatever the length
OMG beware, I have someone that likes my novels.

I also like reading others details. It is how I learn. Some stuff sticks, some stuff doesn't. It wasn't that long ago when I was thinking. AHI??? what the heck is that?

I worked with and around doctors for 30 years. While I respect their education and experience I have seen first hand how patients can be treated even in the best of circumstances. They will listen but they don't really hear what we are saying and these are the good ones. The bad ones won't even bother to listen.
I am a doctor's worse nightmare when it comes to a patient. I have just enough working knowledge to question them on a level where they have to hear what I say. I don't blindly accept that God has spoken.......

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roster
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Re: Encore report...when < 5 AHI is not enough

Post by roster » Thu Jul 02, 2009 12:38 pm

Pugsy,

One question and one comment.

What is the designed vent rate for your mask? I don't think you have to worry about leaks based on your leak line in the report. That machine will compensate for total leak up to about 75 lpm in my experience.

When I started out with sidesleeping using a backpack, my legs hurt badly for three weeks and this really destroyed my sleep. The fourth week the pain let up and by the fifth and sixth week it went completely away. I am not saying your pain from sidesleeping will eventually go away, but it is a possibility.

BTW, now that I tummy sleep, if I do roll to either side, after a short time the pain comes back in my legs. I guess if I had to sidesleep again, I would have to go through that same period of painful adjustment.

Regards,

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I have a vision that we will figure out an easy way to ensure that children develop wide, deep, healthy and attractive jaws and then obstructive sleep apnea becomes an obscure bit of history.https://www.youtube.com/watch?v=0ycw4uaX ... re=related

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Re: Encore report...when < 5 AHI is not enough

Post by Pugsy » Thu Jul 02, 2009 12:59 pm

rooster wrote:What is the designed vent rate for your mask? I don't think you have to worry about leaks based on your leak line in the report. That machine will compensate for total leak up to about 75 lpm in my experience.
Per the little book that came with my Swift LT for her mask.
At 12 cm of pressure the vent flow is listed at 33 L/min. Is this the figure you were asking about?
Since my pressures vary just a bit either way, it still gives me a very close figure to work from.
Yes, I agree that my leak rate in these reports is quite acceptable.

Brenda

PS: So sorry if you misunderstood my comment about side sleeping. Side sleeping (or any position for that matter) is not painful itself. It is staying in one position for prolonged times that is painful and causes me to wake and toss and turn. The key word being "staying". It has been this way for nearly 20 years since I broke my back and pelvis. Alas, just other factor mucking up my therapy. We can cuss and discuss it later.

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