frequenseeker wrote:
I still avoid sulfites. I think your experience with even the tiniest amounts of corn certainly demonstrates how powerful such allergies can be.
I tie my edema to salt sensitivity. Very hard to avoid salt and believe me I make the effort all the time. (Amazing how some soups can have 100 mg and other 1000mg or more of sodium. )
I have to remember to have something salty once in awhile because I don't use any processed foods-lol...and I can't stand anything too salty (and haven't been for years since I started limiting processed foods). Nowadays anything with more then 3-4 ingredients is pushing my luck.
frequenseeker wrote:About my turbinates, maybe I was a bit extreme in my description. It is my left nostril that seems to be the chronic one. I believe I usually have at least one functioning well enough. I don't think it the cause of the ASV trouble. If I was having continuous flow limitations from that (or any other cause) during the sleep study would thay not have investigated that?
What strikes me as funny is the recommendation from your Adapt titration. It sounded like they used it the entire night at its presets of EEP 4 (I thought the lowest possible EEP was 5?), PS min3/max10 and then told you to use a higher setting at home to deal with pre-existing obstructive events. Isn't the entire purpose of an Adapt titration to titrate to proper EEP to eliminate OA, then see what the Adapt is going to do with any centrals that may be there? I guess I don't see what the purpose of playing with the EERS all night was if obstructive events were not adequately addressed to start with? Anyone else? Its like they totally ignored any obstructive events, which is were flow limitation would come in.
Did they ever give you more information then what you posted about your results from any of your PSG's? Did they ever see any central apneas or hypopneas? The only thing I remember was from your first BI titration, when they noted instability in breathing in unstable non-REM (which isn't that suppose to have somewhat unstable breathing?) and with BiPAP, which is why they didn't recommend you use it, wasn't it? And now they are recommending BiPAP when that was the biggest indicator of instability? It just doesn't seem like they are even being consistent in their recommendations and are just throwing whatever at you and seeing if it sticks. If it were me, I'd be questioning the treatment and its rationale.
frequenseeker wrote:They know the pressure at the nostrils, and if there was an interference it would have affected the whole algorithm, no?
No and yes. They don't know the pressure at the nostrils if the interface was affecting the Adapts ability to measure. Where does the pressure sensor line end, FQ? At the cuff on the end of the machine hose where you connect your mask, right? Which is some distance away from the mask on the Swift, as well as the Vista & Activa. That's were they know the pressure at, and the pressure in the interface is projected based on which mask is selected & the impedance it calculated during LC. Do you see how switching out masks after running LC can screw things up? The Adapt thought it was going to be working in metric and you gave it an imperial ruler without telling it when you switched to the Swift!
frequenseeker wrote:Aside from any other discussion that can be made about my sinus/nasal situation there are three points behind my mentioning it: 1. the initial Learn Patient might be affected by the initial congestion/swelling even if it gets better later
The Adapt has been programed to handle minor changes throughout the night, as any CPAP is, to maintain the correct pressure. I'm sure its program includes variables for expected changes in how full the humidifier is (which the sensor tube bypasses, so it probably not as big of an issue) and normal changes in nasal congestion throughout the night. It does make adjust throughout the night, its not like it takes a snap shot of what happening now and says this is it for the night. That's the
adaptive part of ASV.
The primary Learn Patient phase happens only after running LC, which most people don't do nightly. Otherwise it would have to do 'Learn Patient' every time you took too long of a bathroom break (am I only one who occasionally gets detoured to their computer on the way back to bed?) The only time the Learn Patient phase was at all evident to me was when I used the Swift, the rest of the time it really doesn't feel any different from the moment I put it on right after LC to any other time.
frequenseeker wrote:2. if the LP callibrated during congestion and later in the night the congestion got better, would that affect the algorithm, and
FQ, if you think congestion is going to mess with the algorithm, what was the Swift doing all this time? You can't say nasal congestion is going to screw things up but a highly restrictive mask isn't. And in all honesty, if anyone was having that severe of congestion regularly, they should be using a FFM and seeking treatment options for their congestion.
frequenseeker wrote:3. if swelling was really a problem would it not show up throughout the night in the flow limitation.
I don't know about during PSG, SAG would have to answer that part of it. My feeling is it would take considerable swelling to affect the Adapt, much worse then what you're apparently having (and I did suffer through a head cold a month or so ago, never once considering
not using my Adapt). The Adapt is not looking for flow limitations, that is what an auto is looking for as it treats OA events; the Adapt is focused on how much air you are exchanging (TV) and how many times per minute (RR), which together becomes Minute Vent (MV). The Adapt assumes OA events and any flow limitations have been taken out of the equations by a properly titrated EEP pressure, so its no different in how it treats OA event then a fixed pressure CPAP.
frequenseeker wrote:
What do you mean by 'running away'?
I think it was really more a matter of stronger pressure combined with the increase RR. Maybe I had just had some big apnea and woke up to experience the increased response of the machine being carried over for longer than I could sleep through.
The Adapt drops back to its minimal PS rates as soon as it senses you breathing on your own again, it doesn't hold at the higher pressure like autoPAPs do. Let's say I'm breathing along normally, its happy at 12/9 (my settings), but let's say this breath cycle I exhale but don't inhale to start the next one. For the first second, its going to give me inhale pressure of 12, but by 1.5 seconds, its going to start escalating to 13, 14, 15, 16, etc.... Based on my normal breathing rate, it will drop back to 12 exhale around the 3 second mark, increasing to an inhale all the way up to 19 (EEP+10) at the six second mark, repeating changing from 9ish on exhale to nearly 19 on inhale as needed. As soon as there is any slight indication of any breathing effort, the extra breathing support instantly disappears and your back to your normal EEP+minPS.
So there is no 'carry over' at all. What I think you may have been feeling is the backup rate, which from experience with the Swift, acted very strangely and 'overbearing' at times...and not how the Adapt would normally behave if you had a compatible mask. Then I don't even feel the back up rate at all really, and even the change from EEP to +minPS is so gentle, I didn't even feel like I was on BiPAP during my titration, let alone a BiPAP ST...now I can tell its there only if I really pay attention. Could of it possibly felt like you were out of synch with the Adapt, trying to exhale when it wanted to start an inhale half way through? I guess you could have had incidences of high pressure (sounds like a weather report-lol) if it was so out synch and not able to read you well at all, but I still say that's because of the Swift.
frequenseeker wrote:I have thought about trying the Vista with ASV just to see..but my problem with the backup rate could still occur anyway, and I don't want to go there again.
I agree a backup rate in general may not be the best for you, as your one sleep doctor had told you. Backup rates are a necessary evil when it comes to significant central disease; I can't see why anyone would want to risk it interrupting their sleep unless its absolutely necessary. BiPAP may not even be the best machine for you based on continually dismal results combined with how it apparently it destabilized your breathing somewhat on your first BI titration. But I think it would be useful for you to at least try the Adapt with a Vista at your normal settings for 15-30 minutes so you can experience the difference yourself. You don't even have to 'sleep' per se, but lay back & watch TV or something. That is what I did for the first hour of my experiments with the Swift, and what I've done with any mask I've used with the Adapt...I want to know how it feel when I awake before I'm willing to sleep with it. After you've settle in for 10-15 minutes, try holding your breath and see what the Adapt does and if you can hold your breath very long- I'd be interested to know how you do with that challenge personally.
I would think considering your brother is also using an Adapt with a Swift, you would want to do it for him, to make sure he isn't going to run into the same issues you have. I would also hope you would be willing to share your results here, as I have. Maybe you can take what we've learned here back to BI and help them realize the Swift isn't a viable option so no one else ends up feeling like you've felt for the last several months. I honestly don't know how you put it up with as long as you did.
FQ, I understand the doctors at BI told you the Swift 'worked' with the Adapt and you trusted them. Just like I trusted the doctors, dietitians and manufactures who told me I couldn't react to corn maltodextrin. I know I was confused, angry and hurt when I realize just how wrong they had been...and I even felt those same feeling toward myself for having believed them when 'I should have known better' It was even worse when I found a journal article published prior to me going on the tube formula that did show corn maltodextrin in infant formula could cause an allergic reaction in some infants who were highly allergic to corn. I had to accept that in my case, it really is a situation of being the exception to the rule, and what they were telling me was based on the accepted common knowledge of how most corn allergies act.
With the Adapt, we are talking about brand new, extremely complex technology and the manufacture is saying not to use the Swift for a reason. In fact, in the clinical manual, they recommend using only a FFM if at all possible, which is what my doctor recommended and required for titration. My ResMed rep, a CPAP user himself, recommended using a FFM if at all possible, but if not, using one of the other approved masks. His words were basically 'why take the chance of not getting the best therapy you can', and he could not understand how anyone could recommend using a Swift with an Adapt...like he said, "they can say it 'works', but is it really working & doing what its suppose to do?"