hookedonstitch - Therapy

[hookedonstitch]

Hi Cathyf

Thanks for responding and for linking the other thread on flow limits.  I had a quick look and will dive more into it later tonight.

I tried the regular Autoset mode last night with the original pressure settings from my Dr.  5.8-8.0 as I just wanted to get some sleep.  I've tried this version of APAP before with no success, so I wanted to gradually increase the pressure so I can adjust to the pressure with little disruption to my sleep.  I'm happy to report that I felt better breathing/sleeping in this mode over the Autoset For Her mode so I will stick with it.

Now about my flow limits, they seem a bit better?  I feel a bit better today.  My Dr. recommended pressure 6.0-9.0 so I think my game plan is to increase by .2 each night and see if the flow limits improve in the APAP Autoset Mode.

Does this sound like a reasonable plan?  Or am I way off target?

As for getting either a BiPAP or VAuto machine even second hand is way out of my budget.  Here in Canada they are going for well over $2500-@3500 brand new so even half that is just not feasible right now.

[hookedonstitch]

I just have a couple more questions around my treatment if someone could offer some more insight for me I would really appreciate it.

Flow limits, what is an acceptable number? What is the maximum number for Med and 95% ?

Also why did my sleep dr. order an increase in pressure (saying I need extra support) when my AHI has always been consistently low. Is she referring to the flow limits without telling me that is why?

[Sleeprider]

Angela, very few doctors focus on flow limits, or anything other than your AHI which is excellent. Based on your doctor's therapy objectives, your CPAP is working great and there is nothing left to do.  Flow limitation is a measure of the resistance of your upper airway to your peak inspiratory flow.  When you look at the flow rate graph up close, you see flat-tops on the wave. This is the "wall" that airflow hits, and it means that you need more inspiratory effort or more inspiration time to take in a normal breath. The most common consequence of this greater respiratory effort is the feeling that sleep is not satisfying. This is because the increased effort causes micro-arousals called Respiratory Effort Related Arousal (RERA). These are present, even when your machine does not flag it, and is interpreted by observing a period of flat-topped flow limited breaths that end with a sudden increase in flow rate, or a spike in flow.  You can easily see these in your chart, and the one flagged RERA is sitting right on one of them. Note all the spikes in flow that are above your normal. Many of those are probably arousals, and the reason you feel more tired.  When we talk about using bilevel to resolve this, it is the increased inspiratory pressure (IPAP) that helps to replace your physical effort to maintain inspiratory airflow and overcome airway resistance.  Your 95% flow limitation is 0.16. This metric is not considered medically significant, but most people that do not exhibit symptoms of flow limitation will have a 95% flow limitation well under 0.1.  

I want to be perfectly clear. Your therapy is very good and very few doctors will be aware or concerned about flow limitation. Most have no idea what it is, or how it impacts sleep.

[hookedonstitch]

Thanks for the clarification Sleeprider.  If my understanding is correct, I need to increase the maximum pressure on my cpap machine to see if the flow limits # decreases?  Or is it both minimum and maximum numbers?  inspiratory effort is that me breathing in?

I will keep my eyes open for a bipap but they are selling for over $2500 here new in Canada and unless the Dr. orders it and my private insurance can cover the majority of that then it is out of my budget.

I will have to make do with what I have.

[cathyf]

I want to be perfectly clear. Your therapy is very good and very few doctors will be aware or concerned about flow limitation. Most have no idea what it is, or how it impacts sleep.

I second this. In sleep medicine, they understand the process as:

• flow-limited breathing represents mildly compromised breathing -- some narrowing/collapse of the airway
  
• hypopnea represents moderately compromised breathing -- significant narrowing of the airway
  
• apnea represents total or near total pause in air moving in your airway.
  

If they think about flow limitations at all, it's as a "junior hypopnea" or "hypopnea lite". Or if you think about it in terms of a car, they think of flow limits as 2nd gear, hypopneas as 3rd gear, and apneas as 4th gear, and the purpose of the cpap is to put the brakes on and slow you down and keep you out of 3rd/4th gear and so if you "merely" have flow limits that is treatment success.


This is because SLEEP medicine has completely lost track of the fact that the goal here is SLEEP and fixing breathing problems is only a means to that end.

With apnea what happens is that you stop breathing and then your body mounts a fight-or-flight reaction to wake you up enough to kick start your breathing. It's like a mini panic attack -- and an AHI of 5 means a mini panic attack every freaking 12 minutes. You spend the night marinating in stress hormones, and it's really hard on your heart, kidneys, all of your internal organs.

The hypoxea is really obvious and not breathing leads to low oxygen and high CO2 and the whole medical profession is poised to treat oxygen deprivation as a medical emergency. Think of the crash cart in the ER, with people rushing about, pounding on chests, shocking with a defribillator, etc.

The problem is that sleep apnea (normally) isn't the medical emergency. Your body is perfectly capable of kicking you back into breathing -- by its own version of a "breathing defibrillator" -- this relatively violent event of waking you up to breathe. Which destroys your sleep and corrodes your internal organs with constant contact with the stress hormones.

As long as the cause-effect relationship is SlowsBreathing causes StopsBreathing causes SystemShock causes WakesUp causes BreathingResets, then using CPAP pressure to  prevent the SlowsBreathing from progressing to StopsBreathing  cures the downstream SystemShock AND WakesUp. Victory!!! Yeah!!!

The problem is people like us, where the cause-effect is straight from SlowsBreathing causes SystemShock causes WakesUp.

And only counting StopsBreathing incidents and declaring victory when you don't have any is obviously stupid with us when you explain it that way.

So we have an entire branch of medicine and all of the associated insurance payment policies, based upon measuring something which is obviously stupid for an entire subset of people with sleep-disordered breathing.

[Sleeprider]

Angela, what the last post by Cathyf does not say, is that she actually experiences nearly the same problem you do. She worked every possible solution with her Autoset CPAP and finally moved to the Vauto (bilevel) a few weeks ago. I was hoping she would tell you her first-hand experience with that, but I think this is the thread where she describes her experience http://www.apneaboard.com/forums/Thread-...pap-police

As far as costs and getting a machine, we can help you to source something reasonable if you end up buying on your own dime, but this is just an awful time to be looking with the Philips recall in full-swing. Prices are currently very high, but will come back. I don;'t know if you ever tried your machine without EPR, but if you did, I'm sure you found it very uncomfortable and your flow limit statistic may have been between 0.2 and 0.4. EPR helps a lot, but bilevel just takes EPR to the next level. Make your CPAP as comfortable as possible until you are able to make that conversion. One of the problems with the Canadian medical system is the challenge of optimizing therapy like this when the system deems your therapy meets all its requirements and priorities.

[cathyf]

The other thing that chaps my butt (as a software developer) is that I would put money down that the autosets that Angela and I already own could do an EPR above 3 if ResMed so chose. I'm willing to bet that all of the autoset's code for setting the IPAP and EPAP is exactly the same code as the vauto is running, and that the thing that prevents an autoset from doing EPR above 3 is only inside the code that decides what to select when you are rolling that dial in the setup menu.

[cathyf]

Angela, what the last post by Cathyf does not say, is that she actually experiences nearly the same problem you do.  She worked every possible solution with her Autoset CPAP and finally moved to the Vauto (bilevel) a few weeks ago.  I was hoping she would tell you her first-hand experience with that, but I think this is the thread where she describes her experience http://www.apneaboard.com/forums/Thread-...pap-police 

Actually I've got threads all over. (Honest! I was trying not to splat everything into a multiplicity of threads! But I would start a new thread thinking that it was about something completely separate, and then the result of the discussion is that I would realize that I was back at the same problem from just a different side.) And as I went I kept having to delete old attachments because I would run out of room, so the threads make no sense in lots of places without the pictures.

(I now have a new process where I'm keeping all of the pictures that I attach in a folder in my dropbox, and I'm putting a link to the dropbox file, and the file name, so I have some clue later. But that doesn't work for old threads.)

This is my current thread which describes my somewhat ambiguous conclusions after an astonishing drop in flow limits when I started with the vauto.
http://www.apneaboard.com/forums/Thread-...ow-limited

Executive summary: for nearly 7 years that I have used an apap, the flow limit graph has been a perfect detector of whether I am awake or asleep. Awake? No flow limits. Asleep? Constant flow limits. With a vauto, my flow limit graph looks like I'm awake!

[hookedonstitch]

Angela, what the last post by Cathyf does not say, is that she actually experiences nearly the same problem you do.  She worked every possible solution with her Autoset CPAP and finally moved to the Vauto (bilevel) a few weeks ago.  I was hoping she would tell you her first-hand experience with that, but I think this is the thread where she describes her experience http://www.apneaboard.com/forums/Thread-...pap-police  

As far as costs and getting a machine, we can help you to source something reasonable if you end up buying on your own dime, but this is just an awful time to be looking with the Philips recall in full-swing.  Prices are currently very high, but will come back.  I don;'t know if you ever tried your machine without EPR, but if you did, I'm sure you found it very uncomfortable and your flow limit statistic may have been between 0.2 and 0.4.  EPR helps a lot, but bilevel just takes EPR to the next level.  Make your CPAP as comfortable as possible until you are able to make that conversion.  One of the problems with the Canadian medical system is the challenge of optimizing therapy like this when the system deems your therapy meets all its requirements and priorities.

While this recall is still active I will have to make do with the machine I have.  At least it gives me time to possibly save some money for a bipap in the future!  

I've tried turning down the EPR a few times but it's very difficult to breathe.  Problem is last night's oscar data was worse in terms of flow limits but I wanted to give it a few more nights before I posted about it just in case it's a one off.  I'm sticking with the autoset function for a few more nights to see how things progress.

The other thing that chaps my butt (as a software developer) is that I would put money down that the autosets that Angela and I already own could do an EPR above 3 if ResMed so chose. I'm willing to bet that all of the autoset's code for setting the IPAP and EPAP is exactly the same code as the vauto is running, and that the thing that prevents an autoset from doing EPR above 3 is only inside the code that decides what to select when you are rolling that dial in the setup menu.

I feel like you've probably already tried all of these things I am trying now.  Did you find any settings that felt better on the Airsense?  

I'm kinda starting to wish I had never gone for that sleep study!!!  I always thought my sleep problems were insomnia and so I put off going for years and years.  My best guess is that I have probably had sleep apnea for at least 20 years not treated.  I bet that has something to do with all of my issues now

Even though the cpap treatment is not optimal I am finally at peace with having to use it and I don't hate it anymore!

[hookedonstitch]

The other thing that chaps my butt (as a software developer) is that I would put money down that the autosets that Angela and I already own could do an EPR above 3 if ResMed so chose. I'm willing to bet that all of the autoset's code for setting the IPAP and EPAP is exactly the same code as the vauto is running, and that the thing that prevents an autoset from doing EPR above 3 is only inside the code that decides what to select when you are rolling that dial in the setup menu.

I just finished reading through your threads and have just realized the only thing I can do is either put up with what I have or save up for a bipap machine and see if it works for me as well as it has worked for you.

I keep grasping at straws for a quick fix with the machine I have but I've just realized there is none.  I appreciate all of the feedback I've gotten so far.