Only post-op recovery seems to break the cycle?!

I've been using cpap since about '98 or so, and despite a never-ending saga of working with the sleep doctor and his staff, numerous PSG's, ongoing mask, equipment, and pressure changes, I continue to feel worse. I am now getting scared.

The only times in the last 11 years I have actually started to feel better was while recovery from torn Achilles repair surgery in '06 and just this past July after ethmoid sinus surgery. In both cases, I had to sleep in a recliner chair without any xpap for 3-4 days, and because of the pain meds, I was sleeping more than usual. By day 3 in each case I began to feel brand new again. Then, within a week of getting back on xpap I was back in the tank.

During recovery from the sinus surgery, my wife, who slept by my side on the sofa, noted that my breathing was deep and normal like she hadn't heard for years. So we decided I would continue to sleep on the chair, thinking the vertical positioning was the key. Well....within a week or so I was right back to feeling lousy, went back to the xpap, and have felt even worse.

Does anyone have any insight as to why I get better when I am recovering from surgery, and then slide backwards after that?

Since I get have surgery every week, I realize I have to keep battling with xpap. My numbers over the last 3 weeks look like this:

AI: 2.3
HI: 7.9
Leak: 0
Pressure: 10.2
(by the way, my machine is an S8 AutoSet Vantage (Rescan identifies it as an S8 AutoSet Spirit). I couldn't set either in my profile)

The daily graphs from Rescan typically show clusters of apneas about every 90 minutes. If I set the pressure higher than 10.4 I start to have aerophagia problems.

I am thoroughly frustrated at this point and getting worse by the day.

//Scott

Have you tried sleeping in the "Falcon" position? That might allow you to bump up your pressure w/o experiencing aerophagia.

Hi Skantner

A few possibilities for you to consider -

1. Is it time for another sleep study

2. Have you talked to your sleep doctor

3. Any chance of trying out an auto machine

4. An oximeter would give you more data to work on

5. An AHi of over 10 seems to be too high to me.
Somehow you have to get it lower.

6. Can you isolate anything about the time you are feeling good?

7. Don't give up.

cheers

Mars

mdintx wrote:Have you tried sleeping in the "Falcon" position? That might allow you to bump up your pressure w/o experiencing aerophagia.

I haven't. Actually I didn't even know about it. I'll search the forum for details.

//Scott

mars wrote:Hi Skantner

A few possibilities for you to consider -

1. Is it time for another sleep study

2. Have you talked to your sleep doctor

3. Any chance of trying out an auto machine

4. An oximeter would give you more data to work on

5. An AHi of over 10 seems to be too high to me.
Somehow you have to get it lower.

6. Can you isolate anything about the time you are feeling good?

7. Don't give up.

cheers

Mars

Mars,

My last sleep study was about a year ago. They gave me a new pressure to use, but my stats haven't gotten any better. I'll have a good night (statistically) here and there, but no consistent string of consecutive nights, so I never end up feeling good. Based on the stats from my machine (AI < 9) my doctor says I'm "cured." Quality of life seems beyond their grasp. Since the last study I worked with their sleep techs for months with no effective improvement. I do have an auto machine. When it drops below 8 my stats get worse, when it goes above 10.6 I can't tolerate it. I was recently thinking about an oximeter - any suggestions on a brand/model? Even so, if it tells my O2 down, what then I wonder? As far as isolating anything when I feel good, it's only been twice in recent memory, and that was after the surgeries.

//Scott

skantner wrote:...show clusters of apneas about every 90 minutes...

I don't know if it's helpful but I had something similar. I have a dumb CPAP so don't know if I was having events or REM wakesups or what, but I was also waking up every 90-120 minutes...this dovetails typical REM cycles. Started in July about 2 wks after sleep doc had me reduce pressure (following 5 nights on the Vantage to collect sleep data) and I switched from a pillow-only to the Hybrid mask. After a few wks of this nonsense, I talked to doc and he thought it might been that my brain taught itself a new habit (JNK Suggested a happy puppy licking my face to wakeup and reward it for making it thru an entire REM cycle...that image helped defuse my frustration but did nothing for my now scary daytime sleepiness). Doc & I decided to try upping pressure a bit and if that didn't work to try a sleep aid (he doesn't like them) to break the 'habit.' In the meantime, over the Labor Day holiday, I attended Dragon*Con, a huge scifi-fantasy-horror convention, where my room was right above the main downtown street with incredible amts of noise that woke me every 30-45 mins for the first 6 or so hrs I was trying to sleep...I was tired and sleepy the next day but slept 9 hrs without wakeups that night. In fact, wakeups now are from events (ya know with the increased breathing and pulse rate) and only 1 maybe 2 a night; it's been that way since that horrible night. I think my brain was so distracted by all the changes attending the con that it 'forgot' that habit. Reco very from surgery seems to me to be just as disorienting for the brain as my experience...BUT I am not a doc and just sharing my similar experience. I work closely with my doc about sleep issues; he's helpful.

skantner wrote:....... When it drops below 8 my stats get worse, when it goes above 10.6 I can't tolerate it. ......

Scott,

Well the first part is easy; just set the minimum pressure to 8 cm. I would do that as a first step.

Also,

#2 - Have you determined whether you have positional sleep apnea? See viewtopic/t43360/viewtopic.php?f=1&t=43 ... 79#p384179 .

#3 Here is link on Falcon position of tummy sleeping to prevent aerophagia viewtopic.php?f=1&t=43663

skantner : after the surgery , were you on any kind of Steroid or antiinflammatory medication to remove edema ?
steroid/antiinflammatory can also remove edema of respiratory passages which might be a contributing factor in apnea-

if not, it would be interesting for me to know what kind of medications (if you don't mind) were you on right after the surgery and when you were feeling great? did you stop this medications around the same time you started to feel lousy again?

some medication can affect the CNS (central nervous system) and increase/alter muscle tone..

williamco wrote:skantner : after the surgery , were you on any kind of Steroid or antiinflammatory medication to remove edema ?
steroid/antiinflammatory can also remove edema of respiratory passages which might be a contributing factor in apnea-

if not, it would be interesting for me to know what kind of medications (if you don't mind) were you on right after the surgery and when you were feeling great? did you stop this medications around the same time you started to feel lousy again?

some medication can affect the CNS (central nervous system) and increase/alter muscle tone..

The only med I had was Vicodin (Hydrocodone-APAP, 5-500 TABLMCK) for the pain. About 20 minutes after taking one of those, I doze off for about 2-3 hours. In terms of anti-inflamatories, I do use Nasonex and Astelin, but they were prescribed much prior to this last surgery.

rooster wrote:

skantner wrote:....... When it drops below 8 my stats get worse, when it goes above 10.6 I can't tolerate it. ......

Scott,

Well the first part is easy; just set the minimum pressure to 8 cm. I would do that as a first step.

Also,

#2 - Have you determined whether you have positional sleep apnea? See viewtopic/t43360/viewtopic.php?f=1&t=43 ... 79#p384179 .

#3 Here is link on Falcon position of tummy sleeping to prevent aerophagia viewtopic.php?f=1&t=43663

Thanks for the links. I will check them now. I see I incorrectly described the pressure situation. I should have said it this way: I had the range set from 8 to 11....When it fell back anywhere below 10 (sometimes all the way back down to , the stats seem to get worse. Sorry about that! Having seen that in Rescan I narrowed the range until ultimately I wound up in the 9.8 to 10.4 range, and set the machine into cpap mode at 10.2

rooster wrote:

skantner wrote:....... When it drops below 8 my stats get worse, when it goes above 10.6 I can't tolerate it. ......

Scott,

Well the first part is easy; just set the minimum pressure to 8 cm. I would do that as a first step.

Also,

#2 - Have you determined whether you have positional sleep apnea? See viewtopic/t43360/viewtopic.php?f=1&t=43 ... 79#p384179 .

#3 Here is link on Falcon position of tummy sleeping to prevent aerophagia viewtopic.php?f=1&t=43663

Rooster,

I believe I probably do have PSA. I read your link and that describes me to some degree. When I can stay on my side I generally do better (AI < .3), but most of the time I keep waking up on my back. I will definitely read the Falcon link closely before bedtime tonight. Thank you!

skantner wrote: ...... Having seen that in Rescan I narrowed the range until ultimately I wound up in the 9.8 to 10.4 range, and set the machine into cpap mode at 10.2

From what I understand at this point, if you can get some relief from aerophagia, you could set a pressure range of 10.2 min and say 13 max. Then watching the events and pressure data and see if the extra pressure takes care of the events.

Positional sleep apnea also needs to be evaluated. What position(s) do you sleep in?

rooster wrote:

skantner wrote: ...... Having seen that in Rescan I narrowed the range until ultimately I wound up in the 9.8 to 10.4 range, and set the machine into cpap mode at 10.2

From what I understand at this point, if you can get some relief from aerophagia, you could set a pressure range of 10.2 min and say 13 max. Then watching the events and pressure data and see if the extra pressure takes care of the events.

Positional sleep apnea also needs to be evaluated. What position(s) do you sleep in?

Yes, that's basically the situation - if I could tackle the aerophagia, I could very likely bump the max up as you suggested and see what happens.

I've traditionally been a back sleeper. I'ved tried side sleeping, specifically on the left, and on the rare nights I could stay there, I noticed the AI number was better. So I want to really read that Falcon link carefully. Is there a special pillow involved with that?

That reminds me of something a friend of mine told me. He had heard of a sleep doctor who perscribed a paticular Lazy Boy
recliner to some patients to help with there sleep apnia!

Woody3 wrote:That reminds me of something a friend of mine told me. He had heard of a sleep doctor who perscribed a paticular Lazy Boy
recliner to some patients to help with there sleep apnia!

I wonder if I could get a military doctor to do that and get the Army to pay for it.