Go home and live with it!

[padawan]

After 10 years of CPAP and working with my sleep doctor, and still in the "Walking Dead" stage, my doctor has essentially just put me in the hospice category. He just told me to "go home and live with it." The in-house RT/PA has clearly been guessing at pressures and other settings. I suspect she is rolling dice under the desk to determine my pressure. As has been noted in other threads here, once you hit a certain AHI reading, they consider you cured - how you feel is not relevant unless it agrees with the numbers.

I am not willing to accept the "go home and live with it" option, and I am scared that I am going to suffer permanent damage. I am really hoping someone can help me get this figured out.

My machine is set for CPAP at 11.2. AHI is currently running anywhere from 6.5-12. Recently the RT had me running APAP from 7 to 12. The AHI was much worse. I noticed from the Rescan graphs that the machine just didn't seem to be helping me when I had events at pressures over 10cm, which seems to square with the A10 posts I've read, so I set the machine to straight CPAP at 11.2.

I picked 11.2 because it's the most I can seem to tolerate without really bad aerophagia. I have tried the Falcon position a few nights, but I just can't seem to get it right. I spend the whole night getting awake and repositioning myself, and I can't seem to get that second pillow under the chest positioned correctly. Moreover, I've never been a stomach sleeper.

I'm all ears for any and all ideas. I really wish I could sleep on my back with enough pressure, and of course, without the aerophagia. I feel absolutely terrible, and yet I can' describe it.

[jnk]

What is your AI most nights?

[ozij]

Additionally:

Are you using EPR?

Which machines have you tried during those years?

What about nasal congestion - do you have any? What's your humidifer on? (Sometimes more humidity cause more apneas).

O.

[Babette]

When is the last time you changed your mask? What are your leak rates?

Have you contemplated seeing another doctor, possibly one board-certified in Sleep Disorders?

Glad you found us. Hope we can help you!!!!!

Hugs,
Barbara

[padawan]

My AHI is averaging 7.6 over the last 30 days and the leak rate is zero. I'm not using EPR mode. Currently I have the humidfier set at 3. And I see I made a mistake in the first post. My pressure is set at 10.8. I couldn't hack 11+ because of the aerophagia.

I do suffer from nasal congestion, and in fact have had various surgical procedures to try to get in under control. Currently I am using Asteline and Nasonex to help control it. My specific allergies are dust mites and mold.

The last time I changed the mask cushion was about a month ago.

The machine I had before the S8 Vantage was a Resmed Auto Respond. Before that, I know they were straight CPAP machines from Resmed, but I don't remember the models.

My doctor is board-certified. I haven't considered another until this recent comment about "living with it."

[Slinky]

*sigh* There's that old A10 chestnut again.

Find a better sleep doctor! Good luck.

[wasColette]

Do you use ramping or settling mode? It's my understanding that while you are in ramping or settling mode the machine is not recording data.

If I wake up in the middle of the night a little restless I will restart so that it ramps for 15 minutes to give myself time to fall asleep again. When you are awake your breathing is different and the machine could be counting events that are really not events at all, just the odd holding of breath, etc. that happen when we are awake and turning over, etc.

[padawan]

Do you use ramping or settling mode? It's my understanding that while you are in ramping or settling mode the machine is not recording data.

If I wake up in the middle of the night a little restless I will restart so that it ramps for 15 minutes to give myself time to fall asleep again. When you are awake your breathing is different and the machine could be counting events that are really not events at all, just the odd holding of breath, etc. that happen when we are awake and turning over, etc.

That's interesting regarding the machine not recording data during ramp/settling. I didn't know that, but I don't happen to be using either of those modes.

[jweeks]

My machine is set for CPAP at 11.2. AHI is currently running anywhere from 6.5-12. Recently the RT had me running APAP from 7 to 12. The AHI was much worse. I noticed from the Rescan graphs that the machine just didn't seem to be helping me when I had events at pressures over 10cm, which seems to square with the A10 posts I've read, so I set the machine to straight CPAP at 11.2.

Padawan,

I'd like to see some of those graphs. Can you post one or two?

-john-

[rise&shiner]

Here are some suggestions for changing how and what you are sleeping on that could improve your readings. Try an anti gravity recliner or before spending the big bucks for a recliner, invest in an antigravity lounge chair. An anit gravity chair is good for people who have back problems, gerd and other related medical issues but it is also good for people who have breathing problems as well. Takes pressure off the back, stomach, lungs, it may prove to help you.
Or try a bed that has different sleep posiitons (similar to a hospital bed this may also help better your numbers. There is also a 3 piece pillow wedge system that people use when they have gerd. or back problems it gives you some flexibility in designing it to fit your needs in sleeping on your back or side. I happen to have a sleepumber bed that not only adjusts hardness but also can adjust its position.

Just don't take what the doctor told you lying down, keep trying different things.

[roster]

......I picked 11.2 because it's the most I can seem to tolerate without really bad aerophagia. I have tried the Falcon position a few nights, but I just can't seem to get it right. I spend the whole night getting awake and repositioning myself, and I can't seem to get that second pillow under the chest positioned correctly. ......

So what position(s) are you sleeping in?

What happens to your AHI if you sleep on your back? Do you need more CPAP pressure on your back?

Don't give up on the Falcon position yet. I have been sleeping in that position the last three weeks without any pillows. It did not seem possible at first but now I have it working and will update the Falcon thread soon.

I also would fire the doctor, but then another one is not likely to do any better for you.

[Hose_Head]

...... The in-house RT/PA has clearly been guessing at pressures and other settings. I suspect she is rolling dice under the desk to determine my pressure. ......

The above sentences from your post have me really confused. They directly conflict with the other threads of the moment where it is argued that only your doctor can set your prescription pressure. Why is your in-house RT/PA setting pressures? That's your doctor's job!

I'm certain others on this board will have some useful ideas for you, chief among which may be advice to take charge of your therapy. At least that way you'll be following advice of someone who cares about the outcome! Coming here is the right, first step!

Have you considered other health issues that may be causing your symptoms? Apnea may not be the root of your issues.

[padawan]

Here are two very recent graphs. The pressure is at 10.8



Rooster: I prefer to sleep on my back, and it seems to require more pressure when I do. Side sleeping works until my arms get numb. I won't give up on anything so long as I have a clue on what to try. I'd like to hear more about the no-pillow option for Falcon.

rise&shiner: I can't say I've ever heard of a anti-gravity chair. I'll take a look at them

[ozij]

jnk asked, rightly about the AI, not the AHI.

Have you had any repeat sleep studies in all those years? What did they show?

Problems:

• You're using a machine that is intentionally built not to raise pressure in response to apneas occurring above 10. The reason is that for the majority of people, those apneas are not caused by obstructions, and therefore additional pressure won't help. The machine does respond to flow limitations and snores above 10. Works great for many, doesn't work at all for some.
• The ResMed algorithm also assumes hypopneas are not obstruction induced, and will not respond to them. That too works fine for many people, but not so well for some.
• You're driven to use higher pressure, and that causes aerophagia.
• You suffer from congestion

Possible solutions:

• Have a gastroenterologist examine your lower esophageal sphincter -- it is this that is letting air into you stomach, and sometimes it needs medical or surgical intervention. Silent Gastroesophageal Reflux Disease (GERD) (a return of acid for you stomach to you nasal cavity that you don't even feel) is a known cause of congestion and sleep disruption, and having it properly treated helps in improving your sleep quality -- including a reduction of AHI.
• Add nasal irrigation -- flushing your nose with salt water -- to your daily nasal treatment regime. See http://www.neilmed.com for an example, and links to studies.
• Use the Autoset's EPR - Exhale Pressure Relief. Its maximum is 3, and for some people the gives relief for aerophagia.
• Try another machine's automatic algorithm - you may do better on a Respironics, a Covidien Sandman or a Fisher & Paykel machine. Each of those has another approach to a. identifying breathing patterns b. responding to the events identified, and may therefore give you better therapy.
• Some people with aerophagia are helped by using a bi-level machine. You need an Rx to buy that. If your PCP (or ENT?) will give you an Rx for a bi-level, you can buy one online -- however I think it would be better you for to have a bi-level titration first.

If you haven't had a PSG in the last years then by all means, change doctors. If you have had one, post it.

Good luck.
O.

[roster]

....... I'd like to hear more about the no-pillow option for Falcon.

.......

This is one where you "just do it". Here are Falcon's photos: viewtopic.php?f=1&t=36738&st=0&sk=t&sd=a&start=15

Just omit the pillow if you care to.