new and problem with exhaling?

[winkin']

Hello,
I am a "re-tread', that is technically a newbie, having failed in the past, but determined to try one more time.
My problem is waking up early in the morning and being unable to breathe. I try to restart but I can't seem to breathe deeply enough and start going into panic mode.
This first machine was a remstar one with cflex plus. Mask was simplus. My setting is relatively low at 7. I have tried different c flex settings and even turned it off. Then tried a loaner (similar remstar with auto) which did feel a bit easier. It stayed mostly at 8, but still woke up gasping and sitting up. I think the problem is with exhaling. I am an uneven breather, sometimes taking short gasping type breaths and then long exhales. When awake I find I'm frequently taking deep inhales, while at night they're more shallow and husband says it would sound as if I weren't breathing at all.
Is this a situation where a bipap might help? I think the rigid set up on these other machines is throwing me off somehow. Major problem may be with insurance as they say I'm being non-compliant but I have tried and even made extra visits to sleep doctor. How can the insurance think I can consistently stick with a machine that was making me dread going to sleep at night and leaving me more tired during the day in order to prove compliancy?
The DME was overbooked and my doctor is switching me to someone new, but I don't want to start all over with another CPAP. I understand doctor would have to send a new script, so fighting my insurance looks immanent. Any suggestions on way to go? I've heard the airsense for her has different options and though more expensive than the respironics, it would nevertheless be less than a bipap. Perhaps a bipap loaner? Recommendations? If so would it than be better to return with the airsense? I'm confused and discouraged but need a cpap as my sleep quality was very poor, though the study showed more problems around the rem stage. Both machines have been returned.
I'm somewhat nervous about posting as it seems some responders can be "short". I do think this is an excellent forum.

[Pugsy]

Could you please tell me the model number of your machine? It's a 3 digit number on a little sticker on the bottom of the blower unit and it may have DS, REF or P in front or behind it.
If there is water in the chamber...be sure to remove the water chamber before turning the machine over to look at the bottom.

Can you please clarify the breathing issues you are experiencing.....is it only when you wake up or is it when you go to bed and keeping you awake for long times or what? Are you waking up multiple times during the night with this gasping thing?

If you are using pressure of 7 cm....are you using CFlex and if you are at what setting?

Bipap use at 7 cm pressure wouldn't be impossible but most people don't need bipap at that pressure. It would be a hard sell to get insurance to pay.

[OkyDoky]

Since you are waking up after sleeping for a while it may be that something is happening with your apnea that wakes you up. A little detective work might help you figure it out on the machine you have now as long as it is data capable. And you monitor your data with software. Sleepyhead is a free program to do this, and we can help. Settings may be able to be changed that will help you through the night.
Are you saying that you returned your machines and you do not have a machine at this point?

[winkin']

Yes, both my machines had to be returned.
At the beginning, the cflex was set at 3 but I tried the other settings as well as without it.
When my doctor checked the card, it looked good. I have a copy in front of me for the first machine reading but not the 2nd one (apap)
CPAP Pressure / Av. % of night in periodic breathing / Av CA index / Av OA index / Av hypopnea index / Av RERA index / Av AHI / Av FL index / Av VS index / Av % in night large leak / Av Lge. Leak
12/19 7 2.1% 0.1 0.3 2.1 2.6 2.5 0.0 0.6 0.1 % 11secs.
(Long Term Trend)
Indices
H: RE: % of Night in Large Leak/ Av Leak

12/19 3:16 PM 3.7% of Night in PB 0.3 0.7 3.3 3.3 4.3 0.0 0.7 0 % 2.1

12/20 10:54 PM 1.1% 0.0 0.2 0.5 3.2 0.7 0.0 0.7 0% 1.5

12/22 3:20AM 4.2% 0.0 0.2 3.8 3.8 4.0 0.0 0.6 0% 0.7

12/22 11:49PM 3.1% 0.0 0.4 1.2 2.4 1.6 0.0 0.6 0% 0.3

12/25 3:54AM 0.6% 0.2 0.2 1.3 1.2 1.7 0.0 0.3 0% 1.8

12/26 2:24AM 4.7% 0.0 0.2 5.3 2.8 5.5 0.0 0.5 0% 1.7

12/27 4:06AM 0.0% 0.5 0.2 0.9 2.0 1.6 0.0 0.2 0.4% 2.9

12/28 4:31AM 0.0% 0.3 0.3 0.7 1.3 1.3 0.0 0.3 0% 0.6

12/29 1:26AM 0.8% 0.0 0.2 1.0 1.9 1.2 0.0 0.3 0% 2.1

12/30 3:01AM 3.3% 0.0 0.2 2.8 3.4 3.0 0.0 0.2 0% 1.9

12/31 1:50AM 0.0% 0.0 0.0 0.0 4.3 0.0 0.0 0.0 0% 3.6

1/1 2:25AM 0.0% 0.0 0.4 1.5 3.7 1.9 0.0 1.5 0% 3.7

1/2 3:34AM 4.7% 0.0 0.8 4.5 3.3 5.3 0.0 0.0 0% 1.1%

1/4 2:02AM 0.0% 0.0 0.0 2.0 2.0 2.0 0.0 0.0 0% 6.2

1/5 3:50AM 0.0% 0.0 0.0 0.0 4.3 0.0 0.0 0.0 0% 2.1

1/6 12:53AM 0.7% 0.1 0.0 1.3 1.6 1.4 0.0 0.5 0.4% 3.0

Min. in Large Leak 1.0 mins. (12/27) 2.0 mins. (1/6)

When I'd awaken, unable to breathe, I usually had a few hrs under my belt.I started to get real antsy though and found myself going to bed much later. I realized I was actually keeping myself awake because of the anxiety. So I would go a day or two without it but I was so tired and off during the day. I was having problems with the mask, always having to lift it up and reset it. So I tried the p10 nasal but that one was much worse. I had a hard time breathing out. I ordered some of the mask zzz's and it helped somewhat but I haven't found the right mask yet. My doctor informed me (after a few weeks wait) about the non compliance response, however when I called the insurance (United Healthcare) they said they had no record for the bipap request! This is typical.I nearly always end up playing "round robin" with them.
So now everything is a mess, I've been very sick with bronchitis without a machine and it's all up in the air. The doctor is very overbooked (don't get me started!!) and I'm feeling like I'm not being taken seriously. I really want this to work..

[Pugsy]

So you aren't using a machine at all right now?

[winkin']

No, I had to return the 2 machines (cpap and apap) to DME as I'm supposed to go with another outfit (long story) And I had not been using the Apap for long as I had the same problem. I was afraid the insurance would not know the circumstances and refuse the bipap. That's why I wondered if a different machine (resmed airsense for her) might be more helpful as It's supposed to be better than the regular one and they may be more willing to spring for that.
P.S. I just printed another post explaining how to interpret the first post. For some reason it printed the data in a different way. I see that hasn't gone through yet (computer goblin acting up) so I'll wait a bit and see if it posts soon. If not will resend.

[winkin']

So my first post of CPAP data printed differently on this board for some reason. I had lined up the numbers vertically, making it much easier to read at a glance. Took me FOREVER as I'm a hunt and peck typer.
I'll see if this way works:

The first line showed "Long Term Trend"
Date (12/19) Pressure (7.0) Average % of Night in Periodic Breathing (2.1%) Av. CA Index (0.1) Av. OA Index (0.3) Av. Hypopnea Index (2.1) Av. RERA Index (2.6) Av. AHI (2.5) Av. FL Index (0.0) Av.VS Index (0.6)
Av. % Night in Large Leak (0.1% ) and Av. Large Leak ( 11 secs.)

The pressure stayed at 7.

The next lines show same lineup followed by corresponding 2 digit number, except for the time and the 2nd from last item which showed " % of Night in Large Leak" that is:
Date -- time -- % of Night in Periodic Breathing-- CA-- OA -- H-- FL-- VS-- RE-- AHI-- FL--VS--% of Night in Large Leak--Av.Leak

All the dates showed 0.0 mins. for "Min in Large Leak" except for 12/27 which showed 1.0 mins. and 1/6 which showed 2.0 mins.
The first time, I tried it during the day.

They didn't give me the print out for the APAP, however I only used it a handful of times, then made the 2nd doctor appt where we discussed the possibility of a bipap script to be sent to a new place. Then I came down with the bronchitis and didn't hear back until I finally called my DME who also hadn't heard from the doctor. She called the following week with news that I should return the machines as she was told I would be using another provider. It was after I contacted my doctor that I got the news ( via a note) that I wasn't approved for a bipap because of non compliance! So it's all up in the air. I'm going to leave a message tomorrow about finding a new provider, but I'm not sure where to go from there-or what my doctor will recommend. I was hoping I'd have something intelligent to contribute.. Also hoping to lose this blasted bronchitis/asthma!

[winkin']

[quote="Pugsy"]
Can you please clarify the breathing issues you are experiencing.....is it only when you wake up or is it when you go to bed and keeping you awake for long times or what? Are you waking up multiple times during the night with this gasping thing?


This happens a few hours after I fall asleep. I suddenly wake up and have to sit up and remove the mask, taking some deep breaths. I would try not to turn off the machine, just remove the mask until I felt better. Then it seems that anxiety would kick in. If I managed to keep it on and fall back asleep, I'd keep waking up and stare at the clock trying to keep it going for at least 4 hrs for compliance sake. Usually though I couldn't, or I'd just squeak through. It definitely affected my sleep and I felt more tired during the day.
It didn't happen in the beginning. Usually I have no problem falling asleep. It took somewhat longer with the mask on. I felt more claustrophobic with the simplus but couldn't tolerate the p10 nasal mask. Also I ended up turning the ramp off as I wanted more air in the beginning.
Fortunately, there wasn't any problem with sound! That was an issue the last time. I'd hear an annoying whine every time I'd breathe in and out. Nothing would make it go away. I'd actually start to hold my breath to stop it!
I'm thinking that I just need more leeway with the numbers, particularly the exhale part. I feel like the "rigidity" is throwing my breathing off. Does that even make sense?

[Pugsy]

You might do better with a ResMed machine that offers EPR exhale relief which makes it function more like a bilevel machine works.
The EPR thing offers a more dramatic drop than what the Respironics offers. EPR is offered on the regular cpap/apap ResMed machines.

The waking in the middle of the night thing...sounds like anxiety is kicking in to make things worse. Without any detailed data available to see what is actually going on when that happens we have no way to know if the problem was preceded by some sort of apnea event or not.

What are your plans now? Are you going to try to get another machine via insurance? Buy out of pocket and not use your insurance?
Since you aren't using a machine right now because you don't have one it is hard to offer any ideas.

The numerical data you posted doesn't really tell us much except that what data was collected wasn't remarkable but there's a lot of stuff on the detailed reports that don't show up in the numerical statistics.

[winkin']

I don't think it's due to anxiety before I first fall asleep because this started after the awakening.. I guess you haven't heard of set upper & lower numbers causing a "build-up or backlash" problem? Would that be called cycling?
I can now contact the busy doctor online so I'll try to get back to her today. I need to fix the DME mix up and find out which one I'll have, as well as address the insurance problem (my insurance says they haven't received the new script and she says it was denied due to non compliance) I'm hoping it has to do with the medicaid ID.
THEN there's the issue of which machine. An airsense 10 autoset for her (have read they're better than reg. one), an aircurve 10 S or V bilevel (not sure of the difference between the two, but have read of an echoing sound), or the Remstar 60 series Bipap Pro w/ Bi-flex? That is, of course, if I'm allowed to request the model. I should also get one that uses Sleepyhead? Not to mention a mask..
I'm afraid this is all SO confusing to me and the longer I wait, the harder it will get to sort it out. All I know is that the auto machine (Respironics) was better than the reg. one as it moves into 8 more often, but that each one is causing the waking up gasping (as well as the stomachache/bloating).
I really want this to work but am discouraged. It helps to read that others have a lot of problems at the start so that I don't feel it's just me & give up.
Thank you for your input.

[Pugsy]

I guess you haven't heard of set upper & lower numbers causing a "build-up or backlash" problem? Would that be called cycling?

Haven't heard of that. Who told you that might be it? and did they explain why and what it was? and were they referring to lower as in minimum and upper as in maximum or bilevel pressures which you haven't experienced yet?
Perhaps what they were referring to is known by some other medical terminology.
Without any detailed data...all we are doing is guessing what the issue might be. Heck, it might be something as simple as a cluster of apnea events causing you to wake up and the dump of adrenalin associated with it.

[winkin']

Actually, I'm trying to figure it out. I'm thinking that since I'm an "uneven breather" (changeable) being forced into rigid or set maximum /minimum (particularly minimum) pressures may have precipitated the sudden awakenings. The variable maximum pressure from the APAP did feel better than the CPAP. So I' m thinking that a variable minimum pressure, as well, might solve the problem. My understanding is that would be a bipap. I'm sorry if I sounded rude.. I was hoping that my "guess" was making sense..
I just know that the APAP did not solve the issue, even without the c-flex or lower settings. And I was hoping I wouldn't sound like an idiot trying to explain the symptoms to the DME!
My doctor was not sure what's causing the problem. She only knows that I'm trying to make it work and am afraid that the lack of hours used would simply signal non-compliance. So we discussed the bipap due to the variable settings. She said it may help with non-compliance as well as the upset stomach/bloated feeling. Most probably, medicaid will nix it though so I may simply be pushing myself up the creek without a paddle..

[Pugsy]

Most probably, medicaid will nix it though so I may simply be pushing myself up the creek without a paddle..

State funded insurance is notoriously stingy and fight tooth and nail for every little dollar. It's going to be a tough sale to get them to spring for bilevel at your pressure and the sporadic compliance thing. They will likely say the pressure isn't that bad and even if it was bad that you didn't give it a fair trial (whatever they think a fair trial might be). And as you well know..just because a doctor prescribes something doesn't mean Medicaid will pay for it.

But if you don't try the answer is always no so give it a try... the ResMed machines though...that EPR feature is like a little mini bilevel machine and might be worth looking at.
You also need to get a full data machine but there again Medicaid wants to supply the cheapest most basic machine to save dollars.

[winkin']

Thanks Pugsy. I will check into the resmeds. Is the EPR with the regular cpap as well as the apap versions? Is there a particular machine you might recommend? I've read about the echo effect of inhale noise on the airsense/curve ones and that might be a problem. I have yet to hear back from doctor, and since I've been sick I haven't pushed it. My original DME said not to use the machine with a bad head cold or bronchitis. On this forum, however, it appears that would be helping me.

[Pugsy]

Yes, EPR is available on both the cpap and apap capable models.
It is not available on the bilevel models when in bilevel mode because bilevel mode is pretty much EPR with more variables available.
With the ResMed AirSense machines there is one model that doesn't offer full data and that is the AirSense 10 CPAP but it does offer EPR.
Full data would be with the AirSense 10 Elite, the AirSense 10 AutoSet and the AirSense 10 AutoSet.