sliding downhill (again) - flow limitations??

[echo]

Thanks (in advance) Snoredog Here are my answers to your questions:

My opinion:

1. I'd want to look at one of your 96-hour Detailed reports,
I never did know how to interpret those. Here are 3 to go with the screen shots.

http://sleepecho.googlepages.com/101108-96H.xls
http://sleepecho.googlepages.com/102108-96H.xls
http://sleepecho.googlepages.com/102208-96H.xls

As for the different pressures:
Between end of July and October 19 I used a fixed pressure of 10.5cm.
On 20 and 21 October I used a fixed pressure of 11cm.
On 22 October (last night) I used APAP at minimum=10.5, initial=11.0, maximum=12.5, IFL1=ON, IFL2=ON

I know the theory is to make a change and stick to it, but the 11.0 was really blowing my mask off my face, and was not very comfortable to sleep with. I also felt worse at 11.0, even though AHI was <1 but runs were still slightly higher.

2. You need to go back to the pressure where you felt good,
I *did* feel good at 10.5, but I stopped feeling good at that pressure since the last few weeks. Before that, there was never a pressure where I felt good for more than a few weeks.

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.
I've been gaining weight slowly but steadily. At 10.5 I felt great - the months of August and September went quite well - sleep-wise - and my events were all quite low. I haven't made any other changes recently that would account for the fact that at 10.5 I no longer feel good, and my flow limitations are higher.

4. Goal should be to NOT have any CA's showing up on line 2.
My central AI is averaging about 0.3 at 10.5cm. At other pressures, (7cm, 8cm, 8.5cm, 10.0 - of which I used that pressure for 18, 46, 42, and 17 days respectively), my central AHI was averaging 0.28, 0.16, 0.18, and 0.32 respectively. Only about once in two weeks do I have zero central's.

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.
The sleep doc said they appeared near 10cm. I found that I had them even at 7cm, as mentioned above. Wish I understood it better.

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.
That's the problem, I'm not feeling better at 10.5 anymore, and that was my best pressure so far (and for the longest time).
We moved into this house back in December last year. I thought I was having mold and allergy problems for a while - that has been mostly solved by: changing the HH water frequently (and getting a new HH tank!), changing the fine filter frequently, regularly cleaning the bedroom (we have a radiator system, boiler is outside), and using the neti-pot frequently - oh and I stopped drinking/eating milk and that has helped quite a bit too.

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

[echo]

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:
<snip>

Ohhh thanks Yup I totally missed those threads!

Glad you didn't link ME to echostore.com

At this point, I'm ready to BUY anything (And I REALLY want a pulse-ox to convince that ox of a partner that HE has OSA )

[Babette]

Wasn't it Snoredog that posted that great template letter on how to demand an Auto from your doc? Or maybe it was Bookbear.... If anyone remembers that letter, would you repost it? I copied it and revised it for my own letter, and then didn't save that letter at work, so I can't email it lickety split to Echo.

Cheers,
Barbara

[Snoredog]

I downloaded your spreadsheets,

1. You do worse at 10.5 fixed (10.5 events should show up under 11 cm pressure).
2. You do have some higher than I'd like to see leak, bad cushion? I'd work on controlling leaks, machine calculates that at 1.25 or higher at times.
3. I would make the following changes:

1. Set Machine in Auto mode.
2. Set Minimum/Initial pressure to 7.0 cm (hey if fixed don't make you feel better, might as well make it more comfortable).
3. I would disable IFL1 setting. This way you have to have a Hypopnea+FL before machine will respond to those.
4. Lower Command on Apnea (A10 setting) from default=10 to default=9.0 cm. This will prevent the machine from responding to CA if pressure is at 9 cm or higher. This setting is for those CA's that don't present a "open" airway (i.e. other 40% that don't present cardiac oscillations, machine will never respond to CA that has cardiac oscillations).

Having a couple CA's per session is usually no big deal, but when you have those you usually feel lousy the next day, headache, like no sleep at all. You may NOT notice any difference from these changes right away, if the worsening effect came on slowly it may leave slowly.

You can leave your Maximum pressure at default=20 cm and setup/use Ramp if needed.

Update: I just seen your other links to your 96-Hour Graphs (didn't see those before commenting above, only your spreadsheets), your leak is fine in the graphs, spreadsheet data shows something totally different. After reviewing your 96-hour reports, I would stick with my suggested settings above. Your FL runs are NOT that bad, but they show up in clusters. If you observe your 96hr reports, rouge CA's show up on line 2 even at 10 cm, machine ignored those (no pressure response) you are not gaining much with the fixed settings in the way you feel, use settings that make you feel better no matter what the AHI shows. Use settings which result in higher Normal % shown on the other summary report page, the higher the Normal % the better.

That machine does a pretty good job if left alone using a range.

[Babette]

Yes, I know you already have an Auto, but the template could easily be tweaked for a BiPAP.

Anyone?
B.

[echo]

Thanks for your input snoredog.

I've tried APAP 7-10 cm, with both minimum and initial=7cm, for a total of 98 nights at the beginning of this journey. Still didn't feel better... the runs were still going up into the 6-8-10 range per hour. I tried both IFL off and on. It gave me 90% pressure as 7cm.

Not sure where you're getting the strange leak numbers from. Most nights the leak runs between 0.6 and 0.7 if I'm on the UMMF, and less if I'm on the Activa. There was one night (two nights ago?) where I took the mask off in the middle of the night and put it back on again a few hours later. Definintely felt like crud the next day. Otherwise I haven't noticed excessive leaks. I'm going by the detailed screen info for that...

Here's another spreadsheet - shows my averages for AI, HI, AHI, central AI, runs, AVs, etc, and % cycles for all the different pressures I've tried. I started in November last year. The last three rows at the bottom are for the last 3 nights. http://sleepecho.googlepages.com/summary.xls

Granted, the number of runs has never been all that high, on average. But I have felt like crud at every single pressure and setting I've tried, except for 10.5 (until now). I was having the lowest number of runs at 10.5, especially in August + September. The total runs index for those 8 weeks was about 1.3 ! Only in October has the runs index jumped up to the averages you see now on the spreadsheet (an average of 4 with some nights at 5-10 runs per hour, and a few with many snores on top of that).

Am I going about this all the wrong way?

[Snoredog]

Thanks for your input snoredog.

I've tried APAP 7-10 cm, with both minimum and initial=7cm, for a total of 98 nights at the beginning of this journey. Still didn't feel better... the runs were still going up into the 6-8-10 range per hour. I tried both IFL off and on. It gave me 90% pressure as 7cm.

Not sure where you're getting the strange leak numbers from. Most nights the leak runs between 0.6 and 0.7 if I'm on the UMMF, and less if I'm on the Activa. There was one night (two nights ago?) where I took the mask off in the middle of the night and put it back on again a few hours later. Definintely felt like crud the next day. Otherwise I haven't noticed excessive leaks. I'm going by the detailed screen info for that...

Here's another spreadsheet - shows my averages for AI, HI, AHI, central AI, runs, AVs, etc, and % cycles for all the different pressures I've tried. I started in November last year. The last three rows at the bottom are for the last 3 nights. http://sleepecho.googlepages.com/summary.xls

Granted, the number of runs has never been all that high, on average. But I have felt like crud at every single pressure and setting I've tried, except for 10.5 (until now). I was having the lowest number of runs at 10.5, especially in August + September. The total runs index for those 8 weeks was about 1.3 ! Only in October has the runs index jumped up to the averages you see now on the spreadsheet (an average of 4 with some nights at 5-10 runs per hour, and a few with many snores on top of that).

Am I going about this all the wrong way?

If you compare the Oct 11th (fixed pressure) to Oct 19 and Oct 22, you did the best on Oct 22 in Auto mode. There were actually fewer FL's showing up in the Auto mode. That is probably because the machine was able to "move" to respond to them. In fixed mode it doesn't move. Where you did the worst was in CPAP mode at 10.5, FL runs showed up in "clusters", most likely corresponding to REM sleep periods. Again, the data from your spreadsheets vs. 96-hr graphs seem to differ especially on leak, your leak on the graphs is excellent.

I don't see you pegging to the Maximum pressure, so that can't be contributing to your fatigue. You seem to be getting plenty of sleep time, have you ever seen your PSG data for non-OSA events like PLM's, RLS or spontaneous arousals, UARS etc.?

Again: Looked at your summary.xls spreadsheet, your Normal cycles is over 94%, I see that as good, my opinion is FL is NOT the cause of your fatigue. Don't limit your Maximum pressure, put it at 15 cm and leave it. On the Minimum side it doesn't really matter put it down lower for comfort, don't put it down where you starve for air. I can tell you, having a AI=.22 and one that is 3 won't make a difference in how you feel.

If you are taking any medications for allergies, supplements or other, I would look at that as being the cause.

[echo]

Snoredog, Hell if you want I'll send you ALL my reports and spreadsheets if it helps.

Looking back on the 7-10 APAP, I always felt like it kept waking me up due to the pressure changes.
For example, in March through May I had a really low AHI as well as really low Flow lims / runs, but still did not get the same quality sleep as I got with the 10.5.

My detailed screen for some days in April/May, for example, shows that it was jumping from 7 to 7.5 or several times an hour, in response to Flow lims. It never got up as high as even 9cm. This was with IFL1 ON.

In the previous weeks to that, I was using it with IFL1 OFF, but it still never went up very high, and my number of events (including runs) was actually pretty low. I still felt crummy, AND I was still getting a few central's every night.

My whole analysis hinges on the fact that between end of July, when I started on 10.5, and a few weeks ago, I was feeling really really good. Insomnia disappeared, I could get up in the mornings, no groggy/hung over feeling, etc... And i was never ever felt that good on any of the other settings.

I cannot make sense of any of this. Can you ???

[echo]

If you compare the Oct 11th (fixed pressure) to Oct 19 and Oct 22, you did the best on Oct 22 in Auto mode. There were actually fewer FL's showing up in the Auto mode. That is probably because the machine was able to "move" to respond to them. In fixed mode it doesn't move. Where you did the worst was in CPAP mode at 10.5, FL runs showed up in "clusters", most likely corresponding to REM sleep periods. Again, the data from your spreadsheets vs. 96-hr graphs seem to differ especially on leak, your leak on the graphs is excellent.

I don't see you pegging to the Maximum pressure, so that can't be contributing to your fatigue. You seem to be getting plenty of sleep time, have you ever seen your PSG data for non-OSA events like PLM's, RLS or spontaneous arousals, UARS etc.?

Again: Looked at your summary.xls spreadsheet, your Normal cycles is over 94%, I see that as good, my opinion is FL is NOT the cause of your fatigue. Don't limit your Maximum pressure, put it at 15 cm and leave it. On the Minimum side it doesn't really matter put it down lower for comfort, don't put it down where you starve for air. I can tell you, having a AI=.22 and one that is 3 won't make a difference in how you feel.

If you are taking any medications for allergies, supplements or other, I would look at that as being the cause.

Sorry I must have been writing that previous post as you were writing this one.

The only thing that I know from my PSG was that I had an AHI of 35.5 and an 'arousal index' of 38.something. They say that "Nothing special noticed on the video recording".

I will attempt to get my PSG and titration info (FULL study) next week when I see the sleep doc.

Something's not right but I don't know what.

I feel as if there's a good correlation between a flow limitations runs and how I feel the next day, but maybe i'm just making it all up. Who knows.

I'm not on any other meds. Thyroid is OK, blood sugar is OK. That is why I want to get the pulse-ox, to be sure that it's from oxygen desats. Though for sure that still won't rule out arousals...

[Snoredog]

if it doesn't get any better going lower, then go higher. I wouldn't use CPAP mode, I'd just increase the Minimum pressure up and see what happens.

IFL1 probably won't do anything toggling that, you don't have enough FL's to make a difference, in fact you don't have that many events period.

Set the Maximum pressure to 20 cm.
Set the Minimum pressure in Auto mode to 12 cm and see what happens, if sleep becomes a train wreck
then you know going higher isn't going to help.

Try the tongue tether and let us know how it goes. Those FL's wouldn't even be an issue if you had any other machine.

[echo]

if it doesn't get any better going lower, then go higher. I wouldn't use CPAP mode, I'd just increase the Minimum pressure up and see what happens.
that's what i've been doing - went from 7 to 10.5 in 1 year. I will stick with the APAP setting for now, with the higher settings. See how that goes...

IFL1 probably won't do anything toggling that, you don't have enough FL's to make a difference, in fact you don't have that many events period.
No kidding! I must be the only person with "successfully treated OSA" who still feels like crud. This is going to be a fun challenge for my sleep doc next week.

Set the Maximum pressure to 20 cm.
Set the Minimum pressure in Auto mode to 12 cm and see what happens, if sleep becomes a train wreck
then you know going higher isn't going to help.

Try the tongue tether and let us know how it goes. Those FL's wouldn't even be an issue if you had any other machine.
Tongue tether?? What did I miss ?? I did try a snoring device once!

Why would the FL's not be an issue with any other machine ? Because they'd be ignored, or flagged as hypopnea's or something?

I appreciate your opinions and your help snoredog!!

[Country4ever]

Hi Echo,
Don't forget there are other possible reasons for your feeling bad. I go through cycles too, and nothing seems to help. I just get over them eventually. Are you possibly going through perimenopause? (I think you're too young for that). Fibromyalgia? SAD? Start any new meds recently, or maybe are developing side-effects from old meds? It may be something else affecting your sleep, rather than something not working with your CPAP.

[Snoredog]

IFL1 probably won't do anything toggling that, you don't have enough FL's to make a difference, in fact you don't have that many events period.
No kidding! I must be the only person with "successfully treated OSA" who still feels like crud. This is going to be a fun challenge for my sleep doc next week.

I appreciate your opinions and your help snoredog!!

Sorry but that is the way I see it, in other words you may have something else causing you to be tired. If you had spontaneous arousals noted on your PSG or those other parasomnias they can leave you fatigued even with a zero AHI. If they noted them as spontaneous, the did so because CPAP didn't eliminate them. It has only been in recent years that they even started looking at Flow Limitations in the lab, if you recall Dr. K was here it was all about UARS. But there wasn't a lot of explanation about how they went about eliminating those spontaneous arousals without buying a book. But it doesn't take a rocket scientist to figure it out they bumped up pressure support with a Bipap.

What I'm trying to say is with your low AHI and the residual FL runs seen I can't see those contributing to your daytime fatigue. If you want to chase that route you have to obtain your PSG's and look at the non-OSA related "arousals" which possibly were destroying your sleep architecture. For example, if you have an arm movement during sleep and associated with that arm movement was seen an associated "arousal" they KNOW that the arm movement contributed to the arousal seen on the EEG. So they can correlate those arm movements to the arousal, if it was a leg twitch or kick, they can associate those and label those RLS. When they label them Spontaneous the arousal is seen on the EEG and if it causes a respiratory event they know that arousal disturbed your sleep architecture. Now when they cannot correlate them to anything like a leg kick or apnea, they call them Spontaneous for unknown origin. That may be what you have but we don't know, those don't get reported in Silverlining. That is why it is best to refer back to your PSG and look for microarousals, spontaneous, PLM's, RLS etc. these are all non-OSA related disruptions to your sleep quality.

Your guess is as good as mine as to the cause of those spontaneous arousals, medications, muscle-skeletal pains, resistive breathing such as from UARS, all you can do is try and error and hope you can eliminate them. Problem is with UARS is your insurance probably won't cover even testing for it as they don't see it as a medically significant disorder. Then I haven't seen people showing up here in droves reporting how well they are doing since having their UARS eliminated. Where are they? They are bound to have a machine question at some point, we don't even get those. My understanding is UARS has been discovered since like 1986 in Stanford, there are 2 doctors that believe it exists. The rest is trying to sell you a book to learn about the disorder. Might as well buy a colon clense.

Wish I could tell you more but there isn't anything else I can tell you.

I am interested in that tongue tether though, my daughter (who is a Dentist) and I have had good debates about that procedure. We have all gone fishing before, treble hooks work great, I had to cut one out of my buddies head once with a pair of side cutters (after we made him wear it home with the lure still attached for the 1.5 hr ride home)

[echo]

I've had a million other reasons to be tired - yes - and run through a million doctors - yes - with ZERO diagnosis.
I've had complaints of Fibro, CSF, multiple environmental allergies of whatever it's called, candidiasis, bowel this-and-that, and on and on and on ..... (Identifying) and eliminiating foods i'm intolerant to, together with cleanses and stuff have gone a long way.
I've seen doctors in the US (where I grew up), in the Netherlands, U.K., and Belgium - both holistic and medical doctors. I've moved numerous times in the past 7 years and haven't had a fixed doc for more than 1 or 2 years at a time.

One of those board certified MDs nearly gave me blood poisoning from a botched lymph node removal (which was suspected of cancer but was probably due to allergies instead). My grandfather was a doctor. I've been overloaded with antibiotics since the age of 1. I've been prodded and poked and investigated since the age of 1, and always, ALWAYS, the diagnosis is "nothing organic/physical" is wrong with you. The last doc that I had that I tried to talk sense with, (just before getting the sleep study) ended up trying to push Prozac on me instead of sending me for a sleep study.

My most recent doc - when I expressed I was concerned about diabetes - told me to eat more carbs and then referred me to a nutritionist, and refused to do a blood sugar challenge.
She is also the same one who told me that "it's normal to be tired in the evenings" when I clearly told her that I was TIRED ALL DAY and that I felt there was something ELSE besides OSA that was still making me tired. Even though I insisted, she basically said she didn't know what to say or do further.

Either I am just plain dump and stupid and these doctors don't take me seriously, or they are just way too focused on things they can measure and prod and poke (and even then, when they find strnage blood values - just tell me "oh anything can cause low X or high Z).

The CPAP therapy is the ONLY thing (besides the food intolerances) that has gone even a LITTLE ways to helping me feel better.

I've gotten pretty good at figuring out what is causing a particular symptom. I can differentiate a food headache from a tension headache/pains from a sugar overdose headache/pains from a sleeping-poorly headache. I can tell when my body is tired beaecuse I didn't sleep enough or didn't sleep well or had too much wine. And in this case, I am pretty damn sure it's the therapy that's not working. I can even feel my throat closing up and I'm falling asleep - that clearly points to me that the pressure isn't high enough. I just find it really annoying that their range of 7-10 is waaaay off, AND the sleep doc has ALSO NOT been of any help.

So, perhaps the problem is ME. Maybe I don't communicate with doctors well? Well, that's bullshit too, because whenever I've worked in customer service, it's the service provider's job to understand the customer, NOT the other way around.
Yet, I've managed to get my food allergies/intolerances diagnosed. I've managed to get treatment for OSA, and I've managed to tweak it pretty well so it was working for me, until recently. I think I haven't done too bad. But at some point, you get tired of fighting not only your own body, but also the people that are SUPPOSED to be helping you.

So SHOULD I investigate other possibilities of tiredness? YES!!! HAVE I investigated other reasons?? YES!!
SHOULD I pursue the diabetes angle further?? YES! Should I pursue the thyroid angle further (even though 4 tests in the past year have all come out negative) - probably!! SHOULD I pursue the Fibro angle - YES!! (But who to go to ?? My current doc doesn't believe any of my nonsense, and I dont even know if Fibro is considered "real" here).

I WILL get a hold of that titration and PSG study ... the sleep doc didn't notice that I had central's until they did the titration. So can I still trust them that they read the original PSG study correctly? I don't know! Can I get a second opinion? Probably I should!

There are SOooo many things I should do, in between studying, working, and trying to maintain a home, not to mention friends and family. So if I haven't been able to track down other health problems, well, believe me I have tried, and tried, and bloody well tried for the last 15 years of my life!!!!!!!!

Sorry if my answer is a bit edgy - it's not directed at you guys!!! I completely realize that you're trying to help, and I really really really really appreciate it. It's just that I'm not only frustrated with the whole sleep medicine community, but with the entire medical community in general. And being sleep deprived to begin with, it doesn't make it easier to be patient.

As SOON as I get that full PSG study I'm gonna post it here and BEG you guys to interpret it.

Thank YOU for being patient with ME!!

[echo]

oops, should have also mentioned - i am not on any meds, nor have i ever been on any meds. Last time I took antibiotics was one or two years ago. I don't even take vitamins (don't get me started on that) except vitamin C or zinc once in a while. The "worst" thing I do is have a glass of wine now and then (glass, that's one glass, not multiple glasses )