Newbie - need exhalation relief AND help with aerophagia

MNBlueMoon · Post by **MNBlueMoon** » Wed Dec 05, 2007 4:47 pm

Thanks to my husband, who's gleaned excellent advice from this board, I've been studying your experiences for the past several weeks. I had a sleep study done at the beginning of November, and afterward, got a ResMed S8 AutoSet Vantage System with humidifier for my month of home titration. I'm in my third week.

Since I started the APAP trial, a few nights have been okay, and I might even have felt a tad better (although it's hard to tell -- I have Chronic neuro Lyme Disease, which makes everything miserable). I love my mask (Comfort Gel nose mask), although I occasionally have nasty post nasal drip, which causes me to swallow to clear my throat.

I have been unable to exhale well while using the ResMed, and end up ripping the mask off in the night more often than not. Also, I've been waking in the middle of the night with severe cramps, farts, burps because of what I learned from you guys is called aeorphagia. I finally quit using themachine last week because the pain from gas was so bad (and deep in my gut, man... not just my stomach. Must have been going on for some time while I slept.)

As for my sleep study, the clinic claims they got 4.5 hours of sleep data (I don't see how - I would bet large amounts of cash that I really slept only two hours at best, and it was really lousy sleep to boot). (Worst night of sleep in my life, complete with full body pains, difficulty breathing, could not get comfortable, etc.) I just happened to flare pretty badly that very night. Of course.

Here is the Physician Interpretation highlights from the sleep study report:

BASELINE
Total Sleep time: 260 minutes.
Sleep latency normal at 18.4 minutes.
REM sleep latencey was 406 minutes.
Sleep efficiency was very poor at 49.8%
Sleep architecture was disrupted with frequent sleep stage changes and arousals.
Snoring reported as mild.

Respiratory events:
- 0 obstructive apneals
- 5 central apneas
- 0 mixed apneas
- 18 hypopneas
- O2 saturation was 92%
- "This study is suggestive of mild sleep apnea. Respiratory events were largely supine or REM dependent."

[Note: My sleep doc thinks that the poor quality of sleep probably is hiding much more serious sleep apnea than, "mild.")

OTHER:
1. EEG: No epileptiform activity was noted during this recording.
2. EMG: No periodic limb movements were noted. PLM index was 0.0.
3. EKG: Frequent PVCs.

RECOMMENDATIONS:
1. Consider either a trial of auto-titrating CPAP with close clinical follow-up for resolution of symptoms or a CPAP/Bi-Level PAP titration study to establish optimal CPAP/Bi-Level PAP treatment pressure. Alternatively, patient may be a candidate for an oral mandibular advancing devise with positional training.
2. Patient will not need to stay for an MSLT for further evaluation.
3. Would suggest optimizing sleep hygiene measures, especially avoiding alcohol and sedatives. Avoiding sleep deprivation would also be beneficial.
4. The patient should avoid dangers of driving while excessively drowsy.
5. Weight management.

-----
Here are the highlight details from my sleep summary report:

No stage four sleep. Above average stage one and stage three sleep.
SLEEP SUMMARL
Lights Off: 10:08: 39 PM
Lights On: 6:50:54 AM
Total Time Recoreded: 522.3 min.
Total Sleep Time: 260.0 min
Sleep Efficiency: 49.8
Sleep Latency: 18.4
Sleep Onset Latency to REML 406 min

Stage 1: 46.0 min or 17.7% (Lab normal 4-5%)
Stage 2: 118.5 min or 45.6% (Lab normal 45-55%)
Stage 3: 34 min or 31.1$ (Lab normal 4-6%)
Stage 4: 0.0 min or 0.0% (Lab normal 12-15%)
REM: 61.5 min or 23.7% (Lab normal 20-25%)

RESPIRATORY EVENT SUMMARY
Total Apneas + Hypopneas: 23
Apnea-Hypopnea Index (AHI): 5.3 /hr
Total Respiratory Disturbances: 136
Respiratory Disturbance Index (RDI): 31.4
REM RDI: 19.5
Supine RDI: 57.1
Respiratory Arousals: 15 or 11%
Respiratory Arousal Index (RAI): 3.5 per hour
Mean Duration of Respiratory Disturbances: 12 seconds

RESPIRATORY DISTURBANCES:
Obstructive Apneas: 0
Central Apneas: 5 or 3.7%
Mixed Apneas: 0
Hypopneas: 18 or 13.2%
RERAs: 113 or 83.1%

OXYGEN SATURATION SUMMARY:
Baseline Oxygen Saturation: 97.6%
Mean Oxygen Saturation: 96.1%
Lowest Oxygen Saturation: 92%
Number of Oxygen Desturation Events: 11%
% Time of Desaturation below 90%: 0
% Time of Desaturation below 85%: 0

PERIODIC LEG MOVEMENT
None

CARDIAC SUMMARY
Mean HR: 10.9 bpm
Minimum HR: 5.4 bpm
Maximum HR: 63.2 bpm

AROUSAL SUMMARY:
Spontaneous Arousals: 32.1 / hour
Respiratory Arousals: 3.5 / hour
Leg Movement Arousals: 0
Total Arousals: 35.5 / hour

---------

All that being said (and I am sorry for the length, really!), and from all the research I've done here, it looks like I need to request a different machine, like the Respironics REMstar Auto with A-Flex (and I believe rested gal and maybe others say to go for the Fisher & Paykel HC heated humidifier). And maybe I should try a full face mask, although I have occasional claustrophobia/anxiety from the Lyme, so that may not work.

Am I on the right track? Do you wise, wonderful folks have any other ideas? I'm going to be talking to my DME tomorrow. My equipment is still under rental and will be for two more months. I know I should insist on the top of the line APAP equipment that fits my needs. I already have a copy of the sleep study and a copy of the CPAP prescription.

Thank you for all the advice and information I've received already.

Warmly,
Elizabeth

Suz-E-Q · Post by **Suz-E-Q** » Wed Dec 05, 2007 5:24 pm

Others on this site can help you much more than I can...but I do know that the night I did my titration the RT had me try breathing with 3 different masks before I went to bed for the titration. The first one I tried was the Comfort Gel and boy I really had a hard time exhaling there and felt like I couldn't breathe because of that. It was as though the vent holes were too small to allow me to exhale without having to "blow" it out.

I then tried the Swift II and one of the ResMed Mirage (not Activa). I felt like I could exhale with these 2 masks. I went with the Mirage for the night and it was fine.

Before you start your next titration ask them to show you 3 or 4 masks and have them let you sit there with the pressure on and breathe with them for a minute or so. You will see a drastic difference on how it feels to exhale in them. If you do another titration try a different mask.

I did experience the inability to exhale and it is actually frightening.

Don't give up and try other masks, sometimes it takes several tries. But in the end trust me it is worth the effort. I have been on for just over a month and I feel sooooo much better.

Best of luck,
Suzanne

cflame1 · Post by **cflame1** » Wed Dec 05, 2007 7:19 pm

Elizabeth,
Because your titration is an on-going thing right now, you'll need to go back to your DME like you said, and request a machine change. Probably won't be an easy thing to get to happen... so be prepared for that. Though at least it's in the first month.

For a full face mask, which part of it makes you claustrophobic? Is it something just between the eyes or is it something covering your mouth? Maybe if you figure out that much, then you'll be able to figure out which one of them will work better for you.

MNBlueMoon · Post by **MNBlueMoon** » Wed Dec 05, 2007 10:28 pm

Thanks for the quick responses!

My current facemask is really just fine. I'm just considering the idea of trying out a full face mask since I sometimes have sinus issues. I have never tried one, so it's just the idea of it that give me a hint that it might be too confining for me.

My real issue is how much trouble will my DME give me about exchanging my ResMed for a Respironincs that has the exhalation relief I am looking for? Don't I have a right to get the one that works for me as long as everything is still a rental? (Our insurance requires a three month rental period before it pays for a machine.)

And do I have the right machine in mind? Should I try for a Bi-Flex or a machine with C-Flex or A-Flex (It sounds like I should get a machine with exhalation relief in both APAP and CPAP mode).

I don't want to make a mistake here, since I'm on disability and definitely have to live with this machine for five years.

rested gal · Post by **rested gal** » Thu Dec 06, 2007 12:14 am

Excellent post, Elizabeth. Welcome to the board!

While there's no machine or type of machine that can guarantee "no aerophagia", the machines that might lessen that for you, imho, are (not in any particular order):

Respironics REMstar Auto with C-flex (M series or pre-M)
Respironics REMstar Auto/A-flex M series
Respironics BiPAP Auto with Bi-flex (M series or pre-M)

I've had aerophagia happen occasionally with any machine I've used. When it is bad, it can be so painful that I can see why a person would have to simply stop using the therapy. Have had that happen to me to a painful enough degree that I had to take the mask off and stay up for an hour or two until the pain subsided. So, I sympathize with you in your search for a machine that can give you both exhalation relief AND relief from aerophagia.

Those machines will definitely give exhalation relief. Whether they can lessen your problem with aerophagia...there's no way to know for sure without trying them, and tweaking settings. Best to have the software (EncoreViewer) so you can be sure you're getting as effective treatment as possible if you have to move the pressure(s) down to a point that you don't have aerophagia.

You might find some info of interest in this recent thread started by another person (CarrieS) who has had that same problem and recently got a bipap auto with Bi-Flex:

Dec 05, 2007 subject: I have my BiPap now what
viewtopic.php?t=26495

Exhalation relief per se is not necessarily going to stop aerophagia if you have something like a very weak or damaged esophageal sphincter. Exhalation relief might help, or might not. It does for some, but might not for others.

Good luck!

glfredrick · Post by **glfredrick** » Thu Dec 06, 2007 10:38 pm

Hi...

I'm a newbie at this hose head stuff just like you, and the first couple of nights were maddening. I was set at 16 -- straight CPAP -- though i did have a ramp from 4 built into my machine. As soon as the pressure got up to 16, I would start choking and struggling with the mask. One night I woke up in a panic!

After doing some checking here on the board, I learned how to reprogram my machine (M series auto) to the auto setting, and I've been having n o problems sleeping through what little night I get since (I'm averaging 5 hrs -- mostly due to bad bedtime habits and work-related issues.)

No more burping and choking. I set my minimum pressure to 7, my max to the prescribed 16. My 90% number is 9.5, and my AHI is 2.5 -- pretty good for a trial run.

I'm using a full-face mask (the new Quatro) which fits well, works well, and is comfortable for me. Also, I'm a serious mouth breather, but I'm having no real issues at all, other than the fact that I'm having to adjust to sleeping with jet fighter gear all over my face and also that I can't go to sleep in my favorite position -- my face buried in my wife's hair... But, the trade off is that she is no longer threatening to head for the spare room anymore -- I'll take that -- and the fact that she also now gets a full night's sleep.

I'd do some playing around with the machine settings if I were you, but of course the normal caveat... I'm NOT a doctor.

MNBlueMoon · Post by **MNBlueMoon** » Fri Dec 07, 2007 4:11 pm

Thanks for the helpful info, rested gal and glfredrick.

Rested gal, do any of the machines you have recommended to me have a quick read out on the machine to show AHI or other helpful things? I have a Mac, and right now don't have a way to load or view the software. (Although we're going to work on it...)

Just wonderin'.

Thanks!

rested gal · Post by **rested gal** » Fri Dec 07, 2007 4:34 pm

MNBlueMoon wrote:Rested gal, do any of the machines you have recommended to me have a quick read out on the machine to show AHI or other helpful things?

The Respironics M series machines do. Their older pre-M machines do not.

The M machines (other than the Plus which doesn't record full data) show weekly and monthly averages of AHI, leak. And the 90th % pressure if using an M autopap or bipap auto.

Unfortunately they don't show "just last night" numbers. But there's a work-around (first posted by Snoredog) that lets you see just last night's numbers...involves re-setting those values to "0" before the next session.

viewtopic.php?p=214752

I like the Respironics machines and the Encore (Pro or Viewer) software. However, I wish they had used resmed's more extensive breakdown of info to be viewed in the LCD window.

MNBlueMoon · Post by **MNBlueMoon** » Sat Dec 08, 2007 7:26 pm

Thanks, rested gal.

Now if I could only get my DME to call me back!

TxStarDiesel · Post by **TxStarDiesel** » Sun Dec 09, 2007 10:59 pm

I think you have been given some wonderful advice. The one thing I would like to add (being a 9 month cpap user and remembering how difficult it was for me as well) . . . things will get better. I couldn't exhale (pressure at 14) and the pains from the gas were terrible.

I don't know if changing masks helped with the gas or if it was just that my body got used to what was happening to it every night. The pain went away after about 3 weeks. The exhale business also got better each night. There are actually some nights I wake up and wonder if my machine has stopped!

Please keep at it and you will see that you feel better. My life has changed dramatically . . . for the better! Good Luck (but work hard at it!)

Guest · Post by **Guest** » Mon Dec 10, 2007 3:47 pm

I finally got an appointment with my DME tomorrow to get a new machine. This is scary! I am afraid I will make a mistake, even armed with all the information you have all give me.

For example, my prescription says, "Auto-Titrating PAP 5/15", but my sleep study physician interpretation suggests a trial of an auto-titrating PAP or a CPAP/Bi-Level PAP titration." Should I be pushing for a Bi-Pap? (Auto, of course...)

Also, Rested gal (and anyone else who cares to weigh in), is it still a good idea to go with the F-P heated humidifier instead of the built in Respironics models? I understand there was a recall... did they fix those leaky problems? And /or are there other issues besides the leaks with Respironics humidifiers?

Thank you again, everyone, for your helpful replies.

ozij · Post by **ozij** » Mon Dec 10, 2007 3:58 pm

I would push for the bi-pap bacause of your high inhale pressure.

You're having trouble ehxaling against that pressure, its pressure already qualifies you for bi-pap insurance- wise, and fixed pressure therapy has failed you. And apap may turn out to be an unnecessary detour.

O.

rested gal · Post by **rested gal** » Mon Dec 10, 2007 5:51 pm

MNBlueMoon, I don't think there's any way the DME would give you a bipap or bipap auto when your prescription says "autopap". Even the bipap auto is not considered an "autopap"...it is first and foremost a "bipap" (bilevel) machine.

If you bought online, a prescription for either cpap or autopap would let you buy an autopap.

But if you wanted a bipap or bipap auto, the Rx would need to say "bipap."

About the notation the doctor put on your sleep study report:

"or a CPAP/Bi-Level PAP titration."

That was not a prescription for a bipap. That sounds like a suggestion about getting a PSG titration done. Another night in the sleep lab, in other words...where the titration starts out using cpap and the tech switches it to bipap as the titration progresses.

MNBlueMoon · Post by **MNBlueMoon** » Tue Dec 11, 2007 6:15 pm

[It's possible I posted this in a different place by mistake... it hasn't appeared here, so I repost anon...]

Yeah, Rested Gal, I didn't think it was an Rx for a bi-pap. There is so much to learn.

I saw my DME today who set me up with a Respironics REMstar Auto M series with C-Flex. He also gave me Respironics heated humidifier and asked me to try it since they didn't have any of Fisher & Paykel humidifiers on hand. This DME (associated with a major local hospital) doesn't like to sell Respironics machines, although my tech today told me that Respironics seems to have solved the leaky humidifier problems. We'll see.

I'm going to give it a try, and then switch to a new (better) doctor and DME in a couple of weeks. If I still have trouble with exhalation or inhalation, I'll deal with them.

Thank you all so much for your help. (And sorry my system kept signing me out when I was posting!).

I'll keep my expectations low, but hope for the best. (Oxymoron?)

Mask

Additional Comments: Pressure = 16!!!