A-Flex - First Night

[RosemaryB]

Rooster, with your high AHI, it may seem like a lot to go after these docs and get what you need, but Snoredog's post sure makes a lot of sense to me. We are all in your corner on getting some tests and the best possible advice to figure out what's going on.

Getting a copy of the data from Encore Pro makes sense, too. I'm not sure how good the medical professionals are at interpreting them. I'm sure you will get a good perspective from some of the experts on this forum.

My experience with GERD: I had silent GERD but once I understood the subtle symptoms, I could tell when it was getting worse. Currently I'm on the maximum dose of Aciphex (a PPI, like prevacid). I take it religiously twice a day. One thing to know about the PPI's is that timing is everything. You have to take it, then wait the right amount of time, (for mine it's 1/2 to one hour before eating) then eat. If you eat before the time is up or if you wait too long, it won't work nearly as well. I wasn't told this at first. You may already know this, but just in case. . . My nagging cough is gone, too, but other symptoms can be there.

[gasp]

BTW, after I get up, I have been letting the machine sit for about an hour before it will display the previous night's data in the screen. Is there a way to immediately refresh this data when I get up?

I don't think so, I think the machine "writes" the data to the card after 1 hour has elapsed signaling termination of the session.

It can track up to 3 stop/start sessions per night, I think if the gap between those sessions is 1hr or longer it rolls the data over to the next day (as opposed to showing it as a gap in therapy). But you would only see that if you had EncorePro reports.

I haven't tracked this to get specifics, but I pull mine after about 15 minutes and get data each day.

Two nights ago I woke up (after sleeping 5 hours) and couldn't get back to sleep. I got out of bed for 1/2 hour and then went back putting on the mask and starting machine by breathing (versus pushing button). I slept for 1 1/2 hour more. The five hours I slept initially didn't show on the report. The only data recorded was the 1 1/2 hours after I went back to bed. Interesting.

[Snoredog]

Ectopic Mucosa Within the Upper Esophogeal Sphincter (stomach lining patches in my UES - a birth defect).

Good idea to keep an eye on it and look for polyps if there is a family history, but if you research it think you will find that finding pretty common.


what happened at 7 cm pressure?

[roster]

what happened at 7 cm pressure?

Thanks for asking. Here is the latest recap.

Night 1 - Sept 12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - Sept 13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - Sept 14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

Night 4 - Sept 15
Pressure 8
Straight cpap setting
Leak 37
AHI 31

Night 5 - Sept 16
Pressure 7
Straight cpap setting
Leak 29
AHI 30

Feel exhausted today, as usual. I am really thinking about sleeping on my side without the machine tonight. Saw here someone used a soccer ball in the back of his tee shirt. The next day he felt like he had been in an all-night rugby match.

At any rate, I had my sleep study faxed to a different sleep doc and I have a consultation with her tomorrow. They built a new office only three miles from my house and they have an excellent reputation.

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CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP

[Snoredog]

I'd stop using the machine, it isn't OSA causing that, I'd look at vocal cord dysfunction.

If you have a lot of mucus at the base of the tongue, that clear sticky stuff it is probably "gluing" those vocal cords shut either that or you have a epiglottis glued to the back of your throat.

If it were me (and you are not me) I would try a Claritin-D every night for 3-4 nights to see if you sleep better (even though Claritin-D supposedly destroys your sleep architecture). The decongestant will dry up that mucus (if it is the problem) and reduce the PVCD.

I guess you see an ENT for that part of the anatomy. I had some videos I put up on that PVCD the other day, you can see what happens via endoscopy camera.

If a person has GERD they can also have a ulcer (they usually check when they do an endoscopy). Ulcers not caused by H-pylori bacteria can be caused by no mucus lining to the stomach, that mucus protects the stomach lining from the stomach acid, when you are low on that mucus film an ulcer can develop. If you take plain uncoated aspirin to reduce heart or stroke, that aspirin strips off that mucus lining and increases risk of ulcer, so they came out with Enteric coated aspirin like Ecotrin which doesn't dissolve in the stomach and is more likely to dissolve in the lower intestine where it doesn't cause stomach irritation. I only take uncoated aspirin if I'm having a TIA and/or my lips are going numb cause I want it in my bloodstream ASAP, otherwise I take a coated one nightly.

So the question is, do you take a PPI to turn off the acid or do you take something that improves the mucus lining of the stomach? Never seen much discussion on that.

I would search for Paradoxical Vocal Cord Dysfunction or Vocal Cord Dysfunction.

Here is one excerpt:

What happens with VCD?
To understand VCD, it is helpful to understand how the vocal cords function. The vocal cords are located at the top of the windpipe (trachea) and vibrate from exhaled air to produce noise and voice. Breathing in and out causes the vocal cords to open allowing air to flow through the windpipe (trachea). However, with vocal cord dysfunction, the vocal cords close together, or constrict, during one or both parts of the breathing cycle. This leaves only a small opening for air to flow through the windpipe and causes asthma-like symptoms.

[roster]

I saw a different sleep doc this afternoon. The office is only 5 minutes from my house and the first doc was 45 minutes away. This doc is a very efficient young female that listened intently to me and expressed herself clearly and logically. She inspired me to have confidence in her and her lab.

A few of her comments:
-She reviewed with me the sleep study and titration study done by my former doc's lab.
-Only one central apnea so she is not concerned about centrals.
-Some concern about RLS because I had too many in her opinion. Previous doc mentioned this also but said RLS should clear up with cpap therapy.
-Based on the results of the titration study, she would also have recommended straight cpap 10 cm as did my former doc.
-She does not trust AHI results from machines at home. The lab has more extensive equipment to get accurate results. As a doctor she can only use the lab results for prescribing treatment.
-Part of the limitation of home equipment is reading your breathing through a mask and hose. In the lab there are air flow sensors under your nostrils and mouth.
-Stated 10 to 15 percent of all cpap patients will feel fatigued and sleepy constantly even if they are breathing and sleeping well at night. It is unknown why this is the case.
-In my case there is no suspicion about VCD or any other unusual features blocking my airway.

I will undergo a titration study the night of October 1. If my pressure needs a significant change they will recommend that and send me home.

If the titration studies shows my pressure is correct or near correct, I will stay all day October 2 for a MSLT.

If the MSLT shows very sleepy, they will prescribe Provigil.

In the meantime she told me to set my machine at 4 - 20 and see what happens.

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CPAPopedia Keywords Contained In This Post (Click For Definition): hose, Titration, CPAP, AHI

[rested gal]

In the meantime she told me to set my machine at 4 - 20 and see what happens.

I think the "4" as the minimum in the range is very, very, VERY poor advice. But I'm not a doctor.

-She does not trust AHI results from machines at home. The lab has more extensive equipment to get accurate results. As a doctor she can only use the lab results for prescribing treatment.

AHI's consistently up in the 20's and 30's at home while doing cpap or autopap treatment are SO unusual that I can't imagine dismissing those results so casually and saying set the machine at 4 - 20 and "see what happens."

-In my case there is no suspicion about VCD or any other unusual features blocking my airway.

Did the new sleep doctor say that? If she said it, what did she base her assessment on?

[Snoredog]

In the meantime she told me to set my machine at 4 - 20 and see what happens.

I think the "4" as the minimum in the range is very, very, VERY poor advice. But I'm not a doctor.

-She does not trust AHI results from machines at home. The lab has more extensive equipment to get accurate results. As a doctor she can only use the lab results for prescribing treatment.

AHI's consistently up in the 20's and 30's at home while doing cpap or autopap treatment are SO unusual that I can't imagine dismissing those results so casually and saying set the machine at 4 - 20 and "see what happens."

-In my case there is no suspicion about VCD or any other unusual features blocking my airway.

Did the new sleep doctor say that? If she said it, what did she base her assessment on?

I agree, the 4-20 cm suggested range is more bad advice, I don't care if she is only 5 minutes away as opposed to 45.

Only way VCD can be ruled out is by an experienced ENT with a nasal scope following the Miller practice guidelines to avoid triggering of the gag reflex response.

While I suspect that Hybrid mask may be part of the higher AHI from the higher leak rate and design making it more difficult for the machine to read his events.

But dropping pressure to CPAP @7 pretty much rules out that AHI being from any kind of Central Apnea, that same pressure going to 11 or 12 cm with no change indicated that he has some sort of restricted airway that doesn't respond to increased pressure.

While the PSG would be a "manual" titration with those pressure responses NOT based upon airflow but EEG and EMG and respiratory belt etc. feed back, I DOUBT any of the monitors would pick up any VCD where the Autopap machine WOULD (because it is only looking at airflow and it sees the blockage).

SAG would have to tell us if they would be able to pick that up or not.

But I agree his doctor has no idea.

[sleepycarol]

What is a MSLT?

[cflame1]

MSLT = multiple sleep latentcy test

basically a nap test to find out if you have narcolepsy or idiopathic hypersomnia

[sleepycarol]

Thanks for the info.

I am trying to figure all of this out and so have lots of questions and everyone has been so patient about answering them!!

[roster]

Here is the latest recap. Does this lowest AHI indicate that I should raise the pressure range again tonight?

Night 1 - Sept 12
Pressure 4 - 10
A-Flex setting 2
Leak 30
90% pressure 10
AHI 25

Night 2 - Sept 13
Pressure 7 - 12
A-Flex setting 2
Leak 37
90% pressure 11
AHI 32

Night 3 - Sept 14
Pressure 10
Straight cpap setting
Leak 35
AHI 33

Night 4 - Sept 15
Pressure 8
Straight cpap setting
Leak 37
AHI 31

Night 5 - Sept 16
Pressure 7
Straight cpap setting
Leak 29
AHI 30

Night 6 - Sept 17
Tennis balls
AHI ?

Night 7 - Sept 18
Pressure rang 10 - 15
No Flex
Leak 49
AHI 20

How does that average leak look? It is close to the Passive Exhalation Port Flow on the Hybrid manufacturer's chart. With the A-Flex, I have been using the second release of the Hybrid shell which has smaller vent ports.

Thanks.

[roster]

Sorry duplicate posting.

[Bamalady]

Hey Rooster.......I am happy to hear that you have a new Doc and are going to be retested. I haven't a clue as to what to recommend until then, but wanted to say hang in there.

[RosemaryB]

It's good to see that you got a somewhat lower AHI with the higher pressure. If you raise it somewhat and still see an improvement, that would be great. Once you get the software and the card reader, it will be easier to see what's going on.

For example, are there hypopneas that are slipping through because the lower number is too low? If so, you would bump up the bottom number. Are you "hitting the top" a lot and see a lot of apneas once you hit the top pressure? If so, that indicates a need to raise the top pressure.

Although the readouts on the machines are better than nothing, having the report will give you better information to know what to do. But it sounds like you are headed in the right direction if the last night is any indication.