About to call KaiserSleepLab - Advice?

[djtowle]

Hello, I've been lurking about here for a few months, but rarely post. Here's my short story.

Started on CPAP end of fall 2007. 1st week was using an auto m-series for titration. At the end of the week I was so happy. Better sleep, no tiredness throughout the day, energy, wanted breakfast in the morning, lost 5lbs, blood pressure dropped about 10-15 points.

The I had to turn in the auto for my permanent machine, an M-series plus. No problem I thought (even though I really wanted the recording features of the pro, at least I would be better off on the cpap sleep-wise then I had been

I was mistaken. When using the straight CPAP I am tired all day, have to take a nap. Doctor says I have silent GERD=pills. I think I am swallowing air - bloated and gassy all day, sometimes really painful. headaches, no energy, heavy limbs in the morning, bad concentration, etc. Almost forgot, wife says I am still snoring even on the machine.

So the questions are.

1. Was it just a freak event that my 1st week of therapy, using the auto worked so well?

2. If I push for/buy a new machine should I get the m-series with c-flex, aflex or go for the gold with the auto bi-flex? I have the humidifier for this series so I would lean toward an m-series.

3. Or is there something else I should be looking at?

4. Anyone have experience dealing with Kaiser on these issues?

PS the DME is Apria, we probably don't need to discuss them

PS Apria sleep tech set me up at 9 after the titration, my 90% on the report was 11. She also showed me how to set the machine myself and gave me all the manuals. I've had the above problems at both 9 and 11, hesitate to go any higher with the bloating/discomfort.

TIA

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CPAPopedia Keywords Contained In This Post (Click For Definition): humidifier, C-FLEX, Titration, CPAP, DME, auto

[Wulfman]

Hello, I've been lurking about here for a few months, but rarely post. Here's my short story.

Started on CPAP end of fall 2007. 1st week was using an auto m-series for titration. At the end of the week I was so happy. Better sleep, no tiredness throughout the day, energy, wanted breakfast in the morning, lost 5lbs, blood pressure dropped about 10-15 points.

The I had to turn in the auto for my permanent machine, an M-series plus. No problem I thought (even though I really wanted the recording features of the pro, at least I would be better off on the cpap sleep-wise then I had been

I was mistaken. When using the straight CPAP I am tired all day, have to take a nap. Doctor says I have silent GERD=pills. I think I am swallowing air - bloated and gassy all day, sometimes really painful. headaches, no energy, heavy limbs in the morning, bad concentration, etc. Almost forgot, wife says I am still snoring even on the machine.

So the questions are.

1. Was it just a freak event that my 1st week of therapy, using the auto worked so well?

2. If I push for/buy a new machine should I get the m-series with c-flex, aflex or go for the gold with the auto bi-flex? I have the humidifier for this series so I would lean toward an m-series.

3. Or is there something else I should be looking at?

4. Anyone have experience dealing with Kaiser on these issues?

PS the DME is Apria, we probably don't need to discuss them

PS Apria sleep tech set me up at 9 after the titration, my 90% on the report was 11. She also should me how to set the machine myself and gave me all the manuals. I've had the above problems at both 9 and 11, hesitate to go any higher with the bloating/discomfort.

TIA

Boy!.....you got a double "WHAMMY"......Kaiser AND Apria.
From what I've read, they're both a PITA to deal with.

Are you using the C-Flex option in the machine?
Since you're using a nasal mask, it's possible that you're mouth-breathing/leaking unless you're taping/sealing your mouth shut in some manner. Ever wake up with a dry mouth?

Air in the stomach is called "aerophagia" and if you do a search on this forum, you'll find many, many discussions about it. The "solution" is very individualistic. Some people need to turn off the exhale relief (EPR or C-Flex) and some need to change settings. Some need their pressure dropped. Some do better on an Auto and some do better on straight CPAP....and then some find relief with Bi-PAP machines.
The GERD (silent or otherwise) also complicates your therapy.

You may need to go back to your doctor and discuss these issues/problems and see if he can force a better machine through the system to help you.

In the meantime, if you could answer my questions, that'll be a start and we can go from there.

Den

[djtowle]

Yes I generally use the C-flex. #3 setting seems to work best for me, others are too hard to breath. I have tried them all, perhaps this week I will try again with it off and see how that happens.

I've only used pressures of 9 and 11, 9 was the initial setting, 11 was the 90% on the titration.

I have had the dry mouth occasionally with some masks/pillows (I've gone through about 6). But with the current mask, the Activa I don't get the tell-tale dry mouth. Once the cushion on the Activa is pressurized it presses down on my upper lip and seems to seal my mouth pretty good.

Haven't tried a full face mask yet. Have a call into the sleep lab. Be interesting to see what they say. Also hard to say about leaks, mouth or otherwise without a data machine.

[rested gal]

So the questions are.

1. Was it just a freak event that my 1st week of therapy, using the auto worked so well?

Probably wasn't a freak thing at all. The autopap apparently suited you well.

2. If I push for/buy a new machine should I get the m-series with c-flex, aflex or go for the gold with the auto bi-flex? I have the humidifier for this series so I would lean toward an m-series.

I'd get the M series Auto with A-flex. I've used them all and find A-flex to be essentially just as comfortable to breathe out with as using my BiPAP Auto with Bi-flex. Plus, with the A-flex machine you won't be dealing with the higher IPAP pressure (inherent in using a bilevel or auto-titrating bilevel) that might...just might...cause you aerophagia.

3. Or is there something else I should be looking at?

If you have mouth and/or mask leak issues under control (hard to know that with a machine like the Plus that gives no useful data...grrrrr) and the GERD under control with med, then I'd go for the Auto with A-flex.

4. Anyone have experience dealing with Kaiser on these issues?

I don't. Thankfully.

PS the DME is Apria, we probably don't need to discuss them

PS Apria sleep tech set me up at 9 after the titration, my 90% on the report was 11. She also showed me how to set the machine myself and gave me all the manuals. I've had the above problems at both 9 and 11, hesitate to go any higher with the bloating/discomfort.

Well, other than having the autopap taken away and being given a Plus cpap machine (which the tech who works for Apria had no control over...Apria decided what machine to give you) it sounds like you had an unusually nice tech working with you. Giving you the Provider manual (if that was included in "all" the manuals) doesn't usually happen. Nor does showing you how to set the machine's pressure yourself. You were lucky to get that particular tech.

And luckier still, to have found your way to this message board!

[xyz]

Have your doctor write a very specific prescription, i.e, brand and model names, and also write "do not substuitute" on the prescription. Do not settle for less.

[vesselpessel]

KAISER HAS A SLEEP LAB?????? Where are you located? Here in No. Cal ( San Mateo County) I was given a home sleep test by Kaiser. Afterward, i was directed to Apria. What a waste! The person at Apria, although well intentioned, had no idea what she was doing. Next I tried the Resiratory Dept at Kaiser. It took them 3 months to finally get me a machine - afterwhich they left me completely on my own - no help with masks - no titration. I finally had to resort to a private DME and pay out of pocket. Good luck to you.

[djtowle]

Spoke with Kaiser today, they're going to set me up with an auto machine for 2 weeks to see if it works for me. Pick it up next week. yay

Sleep lab may be a poor choice of words, though I thought that was on their answering machine. I'm in North San Mateo County too. Sounds like you went through the same program I did. The 'system' definitely needs improving. However every time I've called over their I always talk to the same person and everything seems to get taken care of pretty quickly. However, following up on treatment etc. defiantly seems to be up to me. There doesn't seem to be any monitoring system in place. Although I was told today that they wish they could give us all auto machines, and then have us mail the cards in when we are having problems so they can see what is happening and help. Seems like the staff is good, but the system is a little flawed.

Well fingers crossed that the auto m-series gets me back on track.

[vesselpessel]

The best guarantee of CPAP compliance is support. It's virtually non-existent at Kaiser Redwood City. There are 2 very supportive AWAKE (ALERT,WELL AND KEEPING ENERGETIC) support groups on the Peninsula for people who suffer from OSA and use CPAP. The first Wed. of every month the group meets at the Stanford Sleep Disorders Clinic at 401 Quarry Road, Stanford, CA. The newcomers Meeting begins at 6:15 PM in Rm 2213. There is another equally good AWAKE meeting on the second Wed. of the month at Sequoia Hospital in Redwood City. The meeting begins at 6:30 PM and takes place in a room in back of the cafeteria in the basement. I highly recommend both and would not have be able to be successful on CPAP without their help. Good luck to you.

[djtowle]

Well I've used the Apap for four nights now. The A-flex is great, I've never been woken up by difficulty exhaling, nor has it been a problem keeping me from falling asleep. (even with c-flex the first few weeks it seemed to take conscious effort to exhale fully).

the 1st few nights have been telling (I have the Encore reader now as well). Originally my Cpap was set to a pressure of nine. This machine is saying 90% is at 15!. Looking at time at pressure most time seems to clump around 10 and 14-15. Big difference from the 9 Apria set me at

AHI has been around 1 - 2.5 depending on the night.

Leaks have been pretty much not there. No large leaks reported and the average leak rate seems comparable to the flow rate on the Activa mask I am using.

Most important I am sleeping better, feel better, the weird dreams started last night. (I had these during my a-Pap titration week, but not so often on straight cpap treatment) Additionally I've lost 3 lb. in 4 days and my blood pressure dropped about 10-15 points, I think apap is defiantly the way to go for treatment, and the a-flex has some real comfort benefits over c-flex.