New Doctor - Feeling More Clarity

[Madalot]

Well, if you were in PSG titration for a fixed BiLevel machine, they would address OA clusters by increasing EPAP. That's standard titration protocol since OA is either incipient or frank before inhalation gets started. Therefore IPAP is not used to address OA.

Rather EPAP must be used for OA based on the sheer timing of event onset...

I saw this in another thread and it reminded me that this is the general consensus of our experts here (and I consider -SWS one of THE experts).

Since we can't raise my EPAP because of my inability to exhale against it, doesn't this mean that raising my IPAP isn't going to solve anything if, in fact, I've still got obstructive apneas going on?

While increasing EPAP is the normal method of tackling obstructive apneas, increasing IPAP can and does help open the airway and help improve breathing during inhalation. So, while it does not fully eliminate the apneas - it tends to "down grade" the apneas to hyponeas. At least that's my own personal experience.

Thanks, John. I was planning to keep doing this experiment (raising IPAP gradually and testing at each increase) but this makes me feel a little better that it may still be useful in helping minimize any obstructions.

[-SWS]

While increasing EPAP is the normal method of tackling obstructive apneas, increasing IPAP can and does help open the airway and help improve breathing during inhalation. So, while it does not fully eliminate the apneas - it tends to "down grade" the apneas to hyponeas. At least that's my own personal experience.

Good point, John. I would add that's true for any BiLevel machine that has a backup rate---but not true for spontaneous BiLevel machines. So what you mentioned applies to your ASV machines and Madalot's machine as well.

I saw this in another thread and it reminded me that this is the general consensus of our experts here... Since we can't raise my EPAP because of my inability to exhale against it, doesn't this mean that raising my IPAP isn't going to solve anything if, in fact, I've still got obstructive apneas going on?

Well the good news is that my comment was specific to spontaneous BiLevel machines---like the one Pugsy is trialing & discussing in the thread you quoted. Your machine, with backup rate, offers the advantage that IPAP can, indeed, treat apneas exactly as John mentioned.

[Madalot]

While increasing EPAP is the normal method of tackling obstructive apneas, increasing IPAP can and does help open the airway and help improve breathing during inhalation. So, while it does not fully eliminate the apneas - it tends to "down grade" the apneas to hyponeas. At least that's my own personal experience.

Good point, John. I would add that's true for any BiLevel machine that has a backup rate---but not true for spontaneous BiLevel machines. So what you mentioned applies to your ASV machines and Madalot's machine as well.

I saw this in another thread and it reminded me that this is the general consensus of our experts here... Since we can't raise my EPAP because of my inability to exhale against it, doesn't this mean that raising my IPAP isn't going to solve anything if, in fact, I've still got obstructive apneas going on?

Well the good news is that my comment was specific to spontaneous BiLevel machines---like the one Pugsy is trialing & discussing in the thread you quoted. Your machine, with backup rate, offers the advantage that IPAP can, indeed, treat apneas exactly as John mentioned.

Thanks so much, -SWS. Good for this weary lady to know I'm not just chasing my tail on this.

Bad storms and power outage has made it more difficult to keep this test moving forward. I used the Trilogy off the batteries last night, but didn't bother doing an overnight as I had originally planned. Will wait until we get power back. Until then, just using the vent is about all I can do.

[Madalot]

I was going to do it Friday, but with the power outage it seemed useless to bother since I couldn't do the download. But everything is back to normal so I did it last night.

The first night at 16 was a bit weird, but it settled down and has been fine. I feel like I'm sleeping a bit better and have had more energy during the day.

I did the upload this morning. Hmm...I'm not sure what to make of it. It APPEARS that the dips he said he didn't like are better. Not gone, but not as bad, but the report lists 1 desaturation, which I wasn't having before. However, it's only down to 93 so it's not a big deal.

Since this isn't bad and doesn't indicate anything real serious, I'm moving on tonight to 17 and see what happens.

[Madalot]

Second IPAP increase, to 17, did NOT go well.

This was new for me - panic attack. I got that mask off just before it turned into a full blown freak out. I sat on the edge of the bed, calmed down and made a second attempt. About 3-4 minutes later, it happened again. It felt overwhelming and too much.

I turned it back to 16 and went to sleep. I thought I was ready to make the move. I will see how I feel tonight - try again if I think I can do it. If not, 16 for a few more nights.

[quietmorning]

Second IPAP increase, to 17, did NOT go well.

This was new for me - panic attack. I got that mask off just before it turned into a full blown freak out. I sat on the edge of the bed, calmed down and made a second attempt. About 3-4 minutes later, it happened again. It felt overwhelming and too much.

I turned it back to 16 and went to sleep. I thought I was ready to make the move. I will see how I feel tonight - try again if I think I can do it. If not, 16 for a few more nights.

Madalot, do you have a 16.5 you can try?

[Madalot]

Second IPAP increase, to 17, did NOT go well.

This was new for me - panic attack. I got that mask off just before it turned into a full blown freak out. I sat on the edge of the bed, calmed down and made a second attempt. About 3-4 minutes later, it happened again. It felt overwhelming and too much.

I turned it back to 16 and went to sleep. I thought I was ready to make the move. I will see how I feel tonight - try again if I think I can do it. If not, 16 for a few more nights.

Madalot, do you have a 16.5 you can try?

Nope. Trilogy doesn't allow that, unfortunately, because it's a great idea.

I told my RT yesterday that if Respironics ever wants to ask a patient about things they could do to improve the Trilogy, I have a list and will add "allow IPAP/EPAP to be adjusted in more precise increments" to it.

My other BIG thing is to at least allow the option to NOT have it beep to tell you when it's switched to the second battery. When we don't have power, it's hard to sleep anyway and that damned alarm wakes me up every time, JUST to let me know it's gone to the second battery. Irritating as hell.

[quietmorning]

Ugh, I'm sorry, Madalot. I hope you're able to get used to the pressure sooner than later.

[jencat824]

Sorry Madalot, hopefully waiting a few more days will get you to a point of being 'ready" for the jump to 17. As you get to the higher pressures they can be harder to tolerate. I was on straight CPAP 19 for years & when I got my new APAP machine, turned out my 'natural' pressure is around 13. That feels so much better to me & I can't believe I was on 19 & just didn't realize the difference in the feeling. You will get to the desired pressure if you are meant to. Perhaps you are getting the best therapy at 16, so your body is saying 'hey' don't need that! Hopefully?

Anyway, hang in there & you will stay in my prayers.
Jen

[Lugus]

Madalot, assuming your husband can take them, give him some iron tablets. RLS can be caused by low available iron. http://health.nytimes.com/health/guides ... tment.html

[Madalot]

Sleeping at min ipap 17 has been accomplished. I took a recliner nap yesterday and set it at 17 for that, so I left it there last night for a second attempt. I don't really like 17 when I'm awake, but if I fall asleep quickly, as I did last night, it's not a problem.

Slept HARD again. Did NOT want to get up. I'll leave it at 17 for a few days and when I feel adjusted, do my overnight and go from there.

I think the night before was a little bit of an attitude/mental issue, where the more I felt it, the more I thought about it and the more I freaked over it. Vicious cycle. I figured it might be, but I was really tired last night and giving it another try seemed a good idea.

Madalot, assuming your husband can take them, give him some iron tablets. RLS can be caused by low available iron.

Interesting. He's already taking a lot of stuff, having finally recovered from a skin strep infection that took MONTHS to treat. The Dermatologist put him on 4 supplements during that situation.

He sees a PCP every 6 months and I'll have him mention this the next time he sees him. I'd be happier if they checked his iron BEFORE we start giving him supplements. Make sure that's really an issue before treating it.

[quietmorning]

YAY!! Glad to hear you made it!! Congrats!!

[Madalot]

Adjusted and stabilized on Min IPAP 17 and did an overnight pulse ox last night. As all my overnights have been for a long time, stayed above 90% so that's good.

I was hoping it would show increased improvement over the "jagged" line from Min IPAP 15 (16 had less jaggedness and close to a more even line) but 17 is worse. This test is similar to the one done at 15 with segments of very obvious up/down patterns.

I did a download from the ventilator as well. Obviously the average IPAP is 17 or higher (has to be) and the average tidal volume is higher, which makes sense. The PTB seems to be a bit worse (down as low as 96% one night) where it was 98% or better at 16. I don't know why that would be.

I don't see anything else that would indicate 17 is causing any problems. The daytime fatigue hasn't changed either way.

Doctor said he wanted me at 18, but I'm concerned that 17 looked more like 15.

I'm not sure what to do at this point - to go back to 16, stay at 17 a while longer and test again or go ahead and move up to 18.

I guess I'll ponder this for a while and if I don't make any decision, stay at 17 until I figure it out.

[Madalot]

Increased the IPAP last night to 18 and slept fine. Briefly started to panic but talked myself down. Will give is 2-3 more nights then run my tests and send all of the info to my doctor for his input.

It's hard to believe I'm sleeping at IPAP 18, with a full face mask AND minimal leaking. Never thought it possible.

[Mary Z]

Madalot, glad to hear you got a doc that didn't get defensive with all the work you've done. It seems as though you're having some ups and downs with the new, higher IPAP. Good luck, keep up the extraordinary work you've been doing.