sliding downhill (again) - flow limitations??

Hey folks, maybe most of you already know i've been around for a while and have been doing pretty ok, but sometimes not. I'm starting to go back to pre-CPAP days, again, and this time I'm at my wits end. I have an appointment with the sleep doc next week and I want to go in there prepared with some good questions.

Background: I started out at a pressure of 7, worked my way up to a 10, and then only recently found that 10.5 was my sweet spot (since end of july). It all went really well for a few months - much more energy than usual, I could get up in the mornings, I've started working full time without too many problems, and I even started jogging (a little bit).

Lately, the 10.5 doesn't seem to be cutting it either. Although intermittent congestion has been a factor, as well as sealing issues with the FFM, nothing about my setup has changed, and I seem to be sliding back into my pre-CPAP days. I am having a lot of difficulty getting up in the morning, and yesterday I slept for 12 hours for the first time in a long time. I keep waking up with this 'hung over' feeling - which is exactly what I would get at either (a) the wrong pressures I had in the past year or (2) before CPAP.

Not only that, but my energy levels are dipping, I'm getting morning headaches, and I'm starting to slide back into depression / I-hate-the-world-and-I'm-useless again (luckily i recognize it so it's managable). And I'm really worried about work, since I'm not able to get up in the mornings again.

I have an appointment with the sleep doc next tuesday, but I'm dreading it. So far they have been of no help. They refused to give me a ffm, they were no help for mouth breathing (told me to reduce the pressure to 4), they were no help with giving me the right pressure (yes, i've mentioned it before: they said to try anything between 7 and 10!!), and in general seem to think that just using the CPAP every night is enough, nevermind that I still feel like crap. These are the same people that don't like APAPs because "they don't respond to apnea's fast enough". Well luckily I now a rebuttal to that, thanks to you great people.

What I would really like is to rent a pulse-ox for a few nights and see what's really going - see if my feeling bad and the oxygen levels are correlated. However, I cannot find any place that rents them here (i'm in Europe). I asked the sleep lab and instead ended up with an appointment with the doc next week.

So back to the data: I bumped up the pressure to 11 for a few days, and strangely enough, the central's I was getting before are no longer showing up in large numbers at 11. But I still feel like crap. I also tried APAP at 10.5-12.5, and ended up with a 90% pressure of 11. Still didn't feel better though. (I haven't really been able to tolerate APAP though).

My total AHI is still low ( <1.0), leaks are completely under control, Central apnea "index" is usually <0.5 and always <1.0.
But my flow limitations/runs are again really really high. In the beginning at 10.5, they were really low, but last few weeks they've been really high again (some nights my "runs index" has been at 10, whereas before they were always <2 and usually <1).

I'm guessing the sleep doc will say everything's fine since my AHI is consistently low.
What to do???

Do I request another sleep study? Do I push for an overnight pulse-ox??

And, what the heck do these flow limitations mean?? From everything I've read, they are normally not an issue, and I seem to be the only one complaining about them. The only thing that correlates with my feeling like crap are these flow limitations!
Does this indicate UARS combined with Obstructive sleep apnea? Do doctors recognize this as a problem yet? Is BIPAP still the treatment option for this??

By the way, the whole story with thyroid and diabetes seems to be OK - nothing to indicate that I have either (yet?). BUT, I HAVE been putting on weight consistently, still. In the past 6 months I've gained about 6 pounds, and about 13 pounds total since starting CPAP.

Well sorry for the long post. I really am getting annoyed with this whole process. I really wish the sleep doc was more helpful. Any wisdom and suggestions are much appreciated!

echo wrote: I have an appointment with the sleep doc next tuesday, but I'm dreading it. So far they have been of no help. They refused to give me a ffm, they were no help for mouth breathing (told me to reduce the pressure to 4), they were no help with giving me the right pressure (yes, i've mentioned it before: they said to try anything between 7 and 10!!), and in general seem to think that just using the CPAP every night is enough, nevermind that I still feel like crap. These are the same people that don't like APAPs because "they don't respond to apnea's fast enough".

What I would really like is to rent a pulse-ox for a few nights and see what's really going - see if my feeling bad and the oxygen levels are correlated. However, I cannot find any place that rents them here (i'm in Europe). I asked the sleep lab and instead ended up with an appointment with the doc next week.

But my flow limitations/runs are again really really high. In the beginning at 10.5, they were really low, but last few weeks they've been really high again (some nights my "runs index" has been at 10, whereas before they were always <2 and usually <1).

I'm guessing the sleep doc will say everything's fine since my AHI is consistently low.
What to do???

Do I request another sleep study? Do I push for an overnight pulse-ox??

And, what the heck do these flow limitations mean?? From everything I've read, they are normally not an issue, and I seem to be the only one complaining about them. The only thing that correlates with my feeling like crap are these flow limitations!
Does this indicate UARS combined with Obstructive sleep apnea? Do doctors recognize this as a problem yet? Is BIPAP still the treatment option for this??

By the way, the whole story with thyroid and diabetes seems to be OK - nothing to indicate that I have either (yet?). BUT, I HAVE been putting on weight consistently, still. In the past 6 months I've gained about 6 pounds, and about 13 pounds total since starting CPAP.

Well sorry for the long post. I really am getting annoyed with this whole process. I really wish the sleep doc was more helpful. Any wisdom and suggestions are much appreciated!

1st I think you need to find another sleep doc for all the reasons you cited above.

My sleep doc said anyone with OSA has UARS. I also feel better when my flow limitations are down or zero. I add them with my AHI.

The hang over feeling comes from low overnite O2. So a pulse-ox will only confirm but then what?

ps. I had 2 low O2's overnite.

Echo,
Do what you can to control the congestion - I don't remember if you're doing sinus rinsing or not - if not , its time to start.
A new seal for the mask may also be necessary - especially if the leaks are causing arousals.

It also sound like you need to chase those flow limitations - how keeping that same auto range, but setting your initial pressure at 12 or 11?

O.

guest - you might be right. I've stuck with this sleep doc / center because they are one of three university hospitals in this area and the hospital has a very good reputation. However, I have moved house and they are now more than an hour away, so it might make good sense to switch, if nothing else than to reduce the drive. There is another big university hospital minutes from my door.

ozij - i do the neti pot rinse off and on. Lately I've been doing it every 2 days or so. It helps, but so has cutting out milk.

As far as leaks go - I put in new seals about a month ago. The hard water really kills the silicone so I do change the silicone quite frequently. On the nights I had really high flow lim's, the leak rate was perfectly between 0.6-0.7 L/sec @10.5cm with the UMFF, and no crazy leaks. I never really seem to get the crazy leaks all that often.

Now, chasing flow lims - that sounds like fun
Last night I used initial=11.0, minimum=10.5, and maximum 12.5. The overall AHI was 0.73, Flow Lim index was 3.43. All in all it wasn't too bad, and the %Normal cycle was already a bit higher than before. But still woke up very tired and very late for work.

I'm just really paranoid about getting more central's. They wreck my sleep more than obstructive apnea's, and during the titration I apparently started getting them at 10cm. At 10.5, I've had an average central AI (according to 420E) of about 0.26, which is definitely not too bad. Last few nights at 11.0, it was again the same range. So many I shouldn't worry too much about them for the time being, and indeed chase after the flow lim's as you suggest.

What is the effect of setting a higher initial pressure, while staying at the same minimum pressure?

I just find it very disheartening that every time I think I find a good pressure, after a few weeks or months it seems to be inadequate. And even a small increase in flow lim's seems to just completely wreck me: with a runs index of <2 i can still manage to wake up and feel good, but at even 3-6 I cannot wake up.
That's why I wanted to get a pulse-ox, to see how bad the flow lim's were actually affecting oxygen levels.
So strange...

Just in case you want to see some data, here are links to 3 nights:
Oct 11: large amount of flow lim's, UMFF @ fixed pressure of 10.5. Runs index=6.5, but together with Acoustical Vibrations, index=47.
Oct 19: same as Oct 11. Runs index=5.8
Oct 22: APAP 10.5-12.5 (initial 11), Activa. Runs index=3.4

I use the Activa the nights I'm not really congested, and the UMFF if the congestion is bad and the nasal rinse isn't helping. I wonder if I'm getting some weird allergies, because it feels like my nasal airflow is reduced even during the day. If I scrunch up my nose (like if you've got a tick), then I get more airflow. Hmmmm... actually maybe I need to see an ENT about this! Uuurgh, I'm getting so depressed about all of this, and I don't have all that much holiday left to go see doctors left and right. I still need to make an appointment with the Gastro as well, to see if I have GERD.
Can GERD also appear as flow limitations?

What I find most impressive on the oct. 11 file is that the runs and snores are concentrated together, and really affect your breathing cycle states - you see that nice line go wayyy down, for a longish time when they occur They're not sporadically spread out all over the place - I assume you desaturate when that happens.

Once night's data is not much to go by, but the at the oct. 22 runs sure looks better - no more dramatic dips, and less snores too. By starting up an a higher initial you'll have the machine going up there quickly if it notices an event (flow limitation included) and dropping slowly. If you look at the bunch of flow limitations just before hour 93, you can see the machine raising pressure carefuly, in steps - with the intial higher it won't pause like that - which may actually help you tolerate the auto.

I agree, the leaks are not an issue.

I don't think you shoud worry about the upper limit - you're not touching it. Now that I've seen the data, I would try with the initial set at 11, not 12. The initial pressure is what the machine starts out at - but if your breathing is OK, is drops very quickly to the minimum.

O.

O,

Thanks for the input Ozij! I agree, I'll keep it at the current setting for another few nights and see how it goes.
A few comments...

ozij wrote:What I find most impressive on the oct. 11 file is that the runs and snores are concentrated together, and really affect your breathing cycle states - you see that nice line go wayyy down, for a longish time when they occur They're not sporadically spread out all over the place - I assume you desaturate when that happens.
Now that you mention it...! I looked back over the past few weeks, and that seemed to be the exception, rather than the rule. On some nights both the snores and the runs are very high, but on most other nights it's only the runs, with some snores. I didn't see any pattern to it.

Once night's data is not much to go by, but the at the oct. 22 runs sure looks better - no more dramatic dips, and less snores too. By starting up an a higher initial you'll have the machine going up there quickly if it notices an event (flow limitation included) and dropping slowly. If you look at the bunch of flow limitations just before hour 93, you can see the machine raising pressure carefuly, in steps - with the intial higher it won't pause like that - which may actually help you tolerate the auto.
OK, I can understand that. I also had not noticed that slow rise right before hour 93. I checked, and it's going up in only 0.2 increments.
I can see now that part of the problem of my previous attempts at using APAP was that the initial pressure was too low, and my flow lim's seem to resolve only at pretty high pressures. Last time I tried APAP for any length of time was with an initial at 8cm! That's before I took the flow lim's seriously...

I agree, the leaks are not an issue.

I don't think you shoud worry about the upper limit - you're not touching it. Now that I've seen the data, I would try with the initial set at 11, not 12. The initial pressure is what the machine starts out at - but if your breathing is OK, is drops very quickly to the minimum.
I agree. Thanks for your help O!!!!

Um, this is the new center I was going to switch to, but I think now I might NOT... eeep!
New surgical procedure used to treat patients with obstructive sleep apnea
I donwanna be a guineau pig!!!

I wouldn't want that procedure either. But, hey...go ahead and switch to that center. I'm sure they still do "cpap", and you can always say "No" to any suggestion of, "There's this surgical procedure we're doing..."

Besides, you (with ozij's excellent help) are already handling your own treatment well. Keep working on those nasal congestion issues. Good luck!

Echo, I thought I didn't like running in Auto mode, either. Turns out, what I didn't like was AFLEX. If you're using any flex, try Cflex instead of Aflex in Auto mode, and see if that helps. I found running Cflex in Auto made all the difference in my comfort level in Auto.

For the past two nights I've been running 10-20 Auto, no flex at all, and I've been very comfortable. (Got the idea from DreamDiver) Only issues have been some rainout due to my bedroom getting really cold the past few nights. I need to pull my data tonight and see what my numbers look like. I feel okay. Not jumping out of bed all perky, but not as bad as you describe.

Since starting this experiment with Auto about two weeks ago, I've found I will run up as high as 17, but only very rarely. I was doing 11-20, but decided to drop it to 10 just for grins, since 10 WAS my titrated pressure April 2007. My numbers are definitely down from when I was running straight cpap.

Turning off the Flex entirely has been no problem at all. I'm surprised by that. And I certainly don't miss the "wheezing" sound the flex makes. Always reminds me of an ICU ventilator.

Anyway, I don't understand all the whiz-bang stuff you and Ozij are talking about, but I thought I'd throw that into the mix.

Cheers,
Babs

I tried to call them.... got the answering machine. Tomorrow's another day.

ACTUALLY, I know EXACTLY what I need to do and I just need a kick in the butt to do it. Next week when I go to the sleep doc I will DEMAND (ok, ask nicely) a copy of the PSG (I had additional arousals higher than the AHI) and the titration (I'm wondering if they even titrated me above 10cm).
Then I'm going to jump on the Bipap bandwagon and ask for one.... Or maybe just a new titration
Then the GERD appointment, then cut my nose off, then ....

Everything was going so well at 10.5 cm waaaaaah. At least I can vent here. Thank you!!

Here's keeping my fingers crossed for the new settings.

Hey babs, thanks for your input!!! Now you see, I really do have an excuse not to answer any emails

The P&B 420E doesn't do cflex or aflex or epr or any of that other fancy stuff, hee hee. Just FULL PRESSURE.

Basically I'm trying to do a balancing act between getting rid of flow limitations and not getting central's. I've been pretty cautious about not setting the pressure too high, but I'm going to have to be more aggressive about these flow lim's. Sounds like a war, doesn't it?! IT IS!!!! And I have had enough. Not to belittle the other folks who have also had really difficult times getting this therapy to work, but durnit, enough is enough!

I've reading up on this UARS thing again, and I may just have to go for a BiPap It's too bad they're so expensive otherwise i'd be ordering one right now...

Oh duh, didn't notice that you were using a different machine than I am.

Okay, okay, I forgive you for not answering emails! Just remember - I now have addresses for your sister and mother and WILL SEND LETTERS if you disappear again.

Allright, go forth, demand BiPap, do whatever you have to. When I asked for my Auto, I went in with 20 pounds of letter and backup about why I wanted it, and then never even had to pull it out of my bag. Think positively.

Hugs & Luck,
B.

Babette wrote:Oh duh, didn't notice that you were using a different machine than I am.

Yeah, I went for the cheapo stuff

Babette wrote:Okay, okay, I forgive you for not answering emails! Just remember - I now have addresses for your sister and mother and WILL SEND LETTERS if you disappear again.

AHAHAH! Did i ever tell you the story ....

Babette wrote:Allright, go forth, demand BiPap, do whatever you have to. When I asked for my Auto, I went in with 20 pounds of letter and backup about why I wanted it, and then never even had to pull it out of my bag. Think positively.

Thanks

My opinion:

1. I'd want to look at one of your 96-hour Detailed reports,
2. You need to go back to the pressure where you felt good,
3. Unless you gained/loss a large amount of weight, your pressure requirements don't fluctuate that much
in a few months. My guess is the changes made triggered more events to show up.
4. Goal should be to NOT have any CA's showing up on line 2.
5. IF CA's are showing up you need to determine if they are showing up at a certain pressure, if so
you need to adjust Command on Apnea parameter to avoid those pressures.

I'd put the settings back to where you felt better. You mentioned moving, is there more dust in the new place
creating more allergy problems? Try checking the furnace filter and replace with a purple Filtrete if those are available
there, replace with the best one you can find not the cheapest.

What are your current settings? What is the Min/Initial/Max pressure settings? What is the status of IFL1 parameter?

echo wrote: . . . What I would really like is to rent a pulse-ox for a few nights and see what's really going - see if my feeling bad and the oxygen levels are correlated. However, I cannot find any place that rents them here (i'm in Europe). . . .

I guess there are places that rent them through the mail over on that side of the puddle, like this place--though it looks a little pricey and I don't know what shipping would be to where you are now:

http://www.eu-pap.co.uk/finger-pulse-oximetry-o-37.html

For that price, you may as well buy one. Here are some recent threads in case you didn't see them . . .

viewtopic.php?f=1&t=34394&p=293790

viewtopic.php?f=1&t=35416&p=303977

Sometimes they are sold used fairly cheaply, if you nose around a bit.

Hang in there, echo. Keep at it.