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Newbie looking for .... something
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Caffeinehigh Offline

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Joined: Aug 2013

Machine: Philips Respironics BiPAP Auto SV Advanced-System One
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CPAP Software: SleepyHead

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Sex: Female
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Post: #1
Newbie looking for .... something
I am six months in and am getting so frustrated! It is to the point where I have been researching possible surgical options to help with the obstruction portion of my apnea. Why would I want to do that??
I was diagnosed with complex apnea. I think I was having about 50 episodes an hour at the time of testing. Since then, I have had about 6 or 7 different pressure settings. The best I have been able to get is about 6-7 AHI, but at that point the pressure was at 21 and I could not sleep. Each breath made my lungs hurt. Outside of that, my AHI has run around 10 with numerous other pressure settings.

Are there people who simply cannot achieve decent levels without such high pressure, or are we missing something? I go back to the doctor tomorrow. Any suggestions??
08-26-2013 11:18 AM
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trish6hundred Offline

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Posts: 6,449
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #2
RE: Newbie looking for .... something
Hi Caffeinehigh,
WELCOME! to the forum.!
I'm sorry you are having such a rought time with CPAP therapy but I encourage you to stick with it.
The surgery doesn't always yield such great results. Usually, people have to wind up using CPAP therapy even after the surgery and from what I understand, it is quite painful.
Hang in there for more suggestions and don't give up.

trish6hundred
08-26-2013 01:35 PM
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RonWessels Offline

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Posts: 465
Joined: Jun 2013

Machine: REMstar Auto AFlex DS560TS
Mask Type: Nasal mask
Mask Make & Model: ComfortGel Blue
Humidifier: REMstar Heated Tube DS6T
CPAP Pressure: 11 - 20
CPAP Software: SleepyHead

Other Comments: CMS50F Pulse Oximeter

Sex: Male
Location: Ontario, Canada

Post: #3
RE: Newbie looking for .... something
(08-26-2013 11:18 AM)Caffeinehigh Wrote:  ... The best I have been able to get is about 6-7 AHI, but at that point the pressure was at 21 and I could not sleep. Each breath made my lungs hurt. ...

The "lungs hurting" happened to me as well as I was getting used to CPAP therapy. For me (and others), it goes away with time.
08-26-2013 05:16 PM
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Tez62 Offline

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Machine: Resmed S9 Autoset
Mask Type: Full face mask
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CPAP Software: SleepyHead

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Sex: Male
Location: Melbourne, Australia

Post: #4
RE: Newbie looking for .... something
(08-26-2013 11:18 AM)Caffeinehigh Wrote:  I am six months in and am getting so frustrated! It is to the point where I have been researching possible surgical options to help with the obstruction portion of my apnea. Why would I want to do that??
I was diagnosed with complex apnea. I think I was having about 50 episodes an hour at the time of testing. Since then, I have had about 6 or 7 different pressure settings. The best I have been able to get is about 6-7 AHI, but at that point the pressure was at 21 and I could not sleep. Each breath made my lungs hurt. Outside of that, my AHI has run around 10 with numerous other pressure settings.

Are there people who simply cannot achieve decent levels without such high pressure, or are we missing something? I go back to the doctor tomorrow. Any suggestions??

Caffeinehigh, welcome, I also have complex sleep apnea, I wouldn't think the surgery would fix the central side of the sleep apnea as it is neurological, basically your brain telling your nevous system not to bother breathing. I have heard it is a painful operation with limited success rates.
I'm lucky as my CPAP treats my obstructive sleep apnea which then lowers the number of centrals I have and I am at a reasonably low pressure compared to yours.
Get your doctor to check all your figures and see what he recommends.
Wish you luck and will be interested to know how you go if you do go ahead with the surgery.
08-26-2013 06:33 PM
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SuperSleeper Offline

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Posts: 9,973
Joined: Feb 2012

Machine: PR System One REMstar Auto (DS560)
Mask Type: Nasal pillows
Mask Make & Model: ResMed Mirage Swift II
Humidifier: none
CPAP Pressure: 12.5 - 18.5 cmH20 (auto range)
CPAP Software: SleepyHead

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Sex: Male
Location: Illinois, USA

Post: #5
RE: Newbie looking for .... something
Welcome to Apnea Board Caffeinehigh...

just gotta say.... love the username!

Coffeelots-o-coffeelots-o-coffeelots-o-coffee

SuperSleeper
Apnea Board Administrator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.

08-26-2013 06:36 PM
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cbramsey Offline

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Post: #6
RE: Newbie looking for .... something
Welcome to the forum!!! We are glad you joined us!!! Welcome

Sleep-well

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-26-2013 07:47 PM
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vsheline Offline

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Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
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Humidifier: H5i
CPAP Pressure: 15 EPAP, PS 5-10
CPAP Software: ResScan

Other Comments: Marfan Syndrome, chronic bradycardia, occasional Cheyne-Stokes Respiration

Sex: Male
Location: California, USA

Post: #7
RE: Newbie looking for .... something
(08-26-2013 11:18 AM)Caffeinehigh Wrote:  I was diagnosed with complex apnea. I think I was having about 50 episodes an hour at the time of testing. Since then, I have had about 6 or 7 different pressure settings. The best I have been able to get is about 6-7 AHI, but at that point the pressure was at 21 and I could not sleep. Each breath made my lungs hurt. Outside of that, my AHI has run around 10 with numerous other pressure settings.

Are there people who simply cannot achieve decent levels without such high pressure, or are we missing something?


Hi Caffeinehigh, welcome to the forum!

ASV machines may need to suddenly raise the inhale pressure to be 10 cmH2O or more higher than the exhale pressure, so the machine can do all the work of breathing for us, when we have a central apnea and stop breathing on our own.

If the patient has Complex or Mixed Sleep Apnea (Obstructive Sleep Apnea in addition to Central Sleep Apnea), treating the OSA may require the exhale (EPAP) pressure to occasionally be moderately high (10 to 15 cmH2O), and if a central apnea occurs when the exhale pressure needs to be, say, 10 or 15, then every time we need to inhale the IPAP pressure may need to jump up to 20 or 25.

Sleep position often makes a huge difference on how high the EPAP pressure needs to be to treat/prevent the obstructive portion of our Complex/Mixed Sleep Apnea. One thing we can do to minimize how much pressure we need, is to make sure we do not roll onto our back while sleeping. I wear a snug teeshirt with a tennis ball in a pocket sewn right between the shoulder blades. It really works.

Take care,
--- Vaughn.

Membership in the Advisory Member group should not be understood as in any way implying medical expertise or qualification for advising Sleep Apnea patients concerning their treatment. The Advisory Member group provides advice and suggestions to Apnea Board administrators and staff on matters concerning Apnea Board operation and administrative policies - not on matters concerning treatment for Sleep Apnea. I think it is now too late to change the name of the group but I think Voting Member group would perhaps have been a more descriptive name for the group.
(This post was last modified: 08-27-2013 01:50 AM by vsheline.)
08-27-2013 01:43 AM
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gjw Offline

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Post: #8
RE: Newbie looking for .... something
Hi Caffeinehigh

Have you ever tried a different type or make of mask? Nasal pillows do not work for every one.

;-> gjw
08-27-2013 07:01 PM
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genes Offline

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Post: #9
RE: Newbie looking for .... something
(08-26-2013 11:18 AM)Caffeinehigh Wrote:  I am six months in and am getting so frustrated! It is to the point where I have been researching possible surgical options to help with the obstruction portion of my apnea. Why would I want to do that??
I was diagnosed with complex apnea. I think I was having about 50 episodes an hour at the time of testing. Since then, I have had about 6 or 7 different pressure settings. The best I have been able to get is about 6-7 AHI, but at that point the pressure was at 21 and I could not sleep. Each breath made my lungs hurt. Outside of that, my AHI has run around 10 with numerous other pressure settings.

Are there people who simply cannot achieve decent levels without such high pressure, or are we missing something? I go back to the doctor tomorrow. Any suggestions??

I assume you have eliminated leaks and mouth breathing. I do not have a lot of experience with complex apnea or SV machines but I have had some surgeries. Many people do not seem to have good long term benefits from UUP surgeries. Some other surgeries either move the tongue forward or the jaw and tongue forward together. They both open up more room for airflow behind the tongue. I do not know if that is your problem or if the operation would help. A doctor may be able to see if he examines you with a instrument with a light and tube. One thing you could try is to wear a boil and bite device like a snorban device which will help hold your jaw and tongue forward possibly helping you. If that helps surgery might also benefit you but only a doctor would know. I wear one with my cpap and also have had surgery and feel that it helps me. I do not know if you can tolerate this or want to try it but it is a thought. You may want to discuss this with your doctor before you do it.
GeneS
08-27-2013 09:55 PM
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me50 Offline

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Machine: resmed S9 VPAP Auto
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Post: #10
RE: Newbie looking for .... something
I used to sleep on my right side and that is my preference. Now, I cannot go to sleep if I am on either side. When I lay on my back, I can go to sleep immediately. I don't like sleeping on my back though. Any suggestions other than the tennis ball suggestion as I have enough trouble staying asleep for more than 2 hours at a time? I think if I could just get to sleep on my side, I might/hopefully stay on my side but not sure. Anyone else have trouble falling asleep on their side?

Thanks.
09-07-2013 09:00 AM
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