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cerebral apnea
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kittyhawkchild Offline

Members

Posts: 19
Joined: Aug 2013

Machine: Resmed auto s9
Mask Type: Full face mask
Mask Make & Model: Quatro for her
Humidifier: Resmed s9
CPAP Pressure: 9
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: Huntersville,NC and Poulsbo, WA

Post: #1
cerebral apnea
I am exhausted. My sleep disorder doctor told me that my oxygen level was very low even after I was using an autoset cpap machine. His answer was to that was to make the pressure constant on my machine constant. He told me that I had cerebral apnea.

LinCare told me that I need an AVI machine that is very expensive. What is that and should I go to a pulmanologist?
08-13-2013 11:58 PM
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big_dave Online

Advisory Members

Posts: 409
Joined: Apr 2012

Machine: PR System One DS560
Mask Type: Nasal pillows
Mask Make & Model: F&P Pilairo Q or ResMed Mirage Activa
Humidifier: PR System One
CPAP Pressure: 14 - 20
CPAP Software: SleepyHead

Other Comments: Former ResMed S8 Autoset II user

Sex: Male
Location: Eugene, Oregon

Post: #2
RE: cerebral apnea
I think you mean an ASV machine, and central apnea. You will want to see a neurologist who specializes in sleep medicine, since central apneas originate in the brain. A neurologist specializes in the function of the nerves and the brain. A pulmonologist specializes in the lungs and the airways. Most sleep doctors are either pulmonologists or neurologists, but a few other specialties can go into sleep medicine, which is a subspecialty.

Sorry, I can't tell you much about what an ASV does, except that it is more sophisticated than a CPAP machine.
08-14-2013 12:52 AM
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kittyhawkchild Offline

Members

Posts: 19
Joined: Aug 2013

Machine: Resmed auto s9
Mask Type: Full face mask
Mask Make & Model: Quatro for her
Humidifier: Resmed s9
CPAP Pressure: 9
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: Huntersville,NC and Poulsbo, WA

Post: #3
RE: cerebral apnea
Thank you so much. The doctor that I was thinking of changing to is a neurologist. Thistledown
I don't know why but my phone just typed Thistledown.
(This post was last modified: 08-14-2013 04:18 AM by kittyhawkchild.)
08-14-2013 04:16 AM
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Shastzi Offline

Advisory Members

Posts: 1,174
Joined: Dec 2012

Machine: ResMed S9 Autoset
Mask Type: Full face mask
Mask Make & Model: FitLife Total face mask
Humidifier: F&P HC150 with Hybernite heated hose.
CPAP Pressure: 15cm-20cm H2O (auto)
CPAP Software: SleepyHead Other Software

Other Comments: CMS50-F wearable Oximeter; Software: SPO2 Assistant

Sex: Undisclosed
Location: Florida, USA.

Post: #4
RE: cerebral apnea
The ASV machine (Auto Servo Ventilator) will get you the keep breathing through the night by
"giving you a nudge" when your brain forgets to breathe.

I'm sure on of the Dr's here can give you a full run down on it since my explaination is
very simplistic.

Good luck and stay the course!

Smile

"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton

Cool
08-14-2013 05:28 AM
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trish6hundred Offline

Advisory Members

Posts: 6,430
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: #5
RE: cerebral apnea
Hi kittyhawkchild,
WELCOME! to the forum.!
Hang in there for more answers to your question and best of luck with your upcoming appointment with the neurologist.

trish6hundred
08-14-2013 02:38 PM
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RonWessels Offline

Preferred Members-2

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: #6
RE: cerebral apnea
Auto servo machines perform just like regular CPAP machines in that they pressurize the airway, providing an inhale pressure when inhaling, and providing a reduced exhale pressure when exhaling. The difference is that, with an auto servo machine, if an inhale is not detected within a given time period, the machine provides the inhale pressure by itself to force you to inhale. Depending on the settings, this is either a "watchdog" that kicks in if you don't breathe yourself, or the inhale pressure is provided at regular periodic intervals.
08-14-2013 04:01 PM
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skyler Offline

Preferred Members

Posts: 75
Joined: May 2013

Machine: Respironics ASV
Mask Type: Nasal mask
Mask Make & Model: Respironics Wisp
Humidifier: System One Respironics
CPAP Pressure: 8-12-20
CPAP Software: Not using software SleepyHead

Other Comments: Diagnosed February 2008

Sex: Undisclosed
Location: Norfolk, Virginia

Post: #7
RE: cerebral apnea
Kittyhawkchild ( I love the Outer Banks), yes, the ASV machine is used with central apnea and you have the basic intro to how an ASV works.
Has your doctor broached the subject of supplemental O2? The ASV might be enough by itself in raising your oxygen levels.
Please keep us posted on how you're doing.
I also use an ASV machine and my sleep doctor is a pulmonologist.
(This post was last modified: 08-15-2013 09:13 AM by skyler.)
08-15-2013 09:13 AM
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kittyhawkchild Offline

Members

Posts: 19
Joined: Aug 2013

Machine: Resmed auto s9
Mask Type: Full face mask
Mask Make & Model: Quatro for her
Humidifier: Resmed s9
CPAP Pressure: 9
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: Huntersville,NC and Poulsbo, WA

Post: #8
RE: cerebral apnea
I asked about supplemental oxygen but the doctor said that oxygen is only for people with serious lung disease. Can you purchase an ASV machine without a prescription? The doctor would not give me mine and that really made me mad.
08-17-2013 05:27 AM
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vsheline Offline

Advisory Members

Posts: 1,907
Joined: Jul 2012

Machine: S9 VPAP Adapt (USA Model# 36007, not better 36037 or 36067)
Mask Type: Full face mask
Mask Make & Model: F10 or SimPlus w/ 2Liners. MirageQuatro & Gecko gel pad
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: #9
RE: cerebral apnea
(08-17-2013 05:27 AM)kittyhawkchild Wrote:  Can you purchase an ASV machine without a prescription? The doctor would not give me mine and that really made me mad.

Hi kittyhawkchild,

Before you even consider buying an ASV machine, please understand that often people have a moderate number of central apnea events in the initial weeks and months of PAP therapy. These often reduce in number and mostly go away within 2 or 3 months, and are usually not cause for concern.

On the other hand, if your initial "baseline" sleep study without CPAP treatment showed central apnea events, then it may be less likely that central events will go away all by themselves as your system adapts to treatment. For your own records, you should ask for a copy of your sleep study reports. Not short summarirles, the full reports, including time plots of the data taken all night.

If needed, ASV treatment is usually more challenging and usually takes even more effort to get used to than standard CPAP therapy. This is because during central apnea events the machine may need to increase your inhale pressure perhaps as much as 10 cm H2O higher than your exhale pressure, if it needs to do all the work of breathing for you. Usually, only full face masks can handle these high pressure changes without malfunctioning.

Also, if you have complex or mixed apneas, some obstructive and some central, you may need a high exhale pressure to avoid the obstructive events, and if at the same time you intermittently need help to avoid central events, the ASV machine may need to raise your inhale pressure perhaps 10 higher than your already-high exhale pressure, and this can create bothersome leaks which may wake you up unless the mask straps are tight enough to prevent "mask farts" from a full face mask.

But if the straps are too tight this will be uncomfortable and also not good. I use a cloth mask liner made by RemZzz, which goes between my full face mask and my face, and prevents mask farts and allows the straps to be loose enough to not cause discomfort.

Also, the high pressures which an ASV machine may occasionally need to deliver will increase the likelihood that some air will get swallowed (aerophasia), which can be bothersome to some people (in addition to leading to belches and whatnot in the morning).

That said (that an ASV machine may not be needed, and if needed may be challenging to get used to and to manage the problems resulting from high pressure), an ASV machine can be adjusted to deliver treatment like a simple constant-pressure CPAP machine or an APAP machine like yours or a bi-level machine or an ASV machine.

So I think you would be able to buy an ASV machine and have it delivered to you adjusted for your present pressure prescription, and after you receive the machine either you or your doctor would be able to readjust the settings to whatever may be appropriate to treat your central events.

But of course an insurance company would surely refuse to reimburse for an ASV machine (these cost between $4000 to $6000 from most DME vendors) unless it is specifically prescribed. Usually there is a lengthly pre-approval process needed before gaining approval for insurance to cover an ASV machine.

So you would be paying for an ASV machine totally on your own, without any reimbursement for the machine itself. By the way, the cost of a brand new "open box special" ASV machine such as the ResMed VPAP Adapt (but ask first to be sure it would be model 36037, not the older ResMed VPAP Adapt model 36007) is less than $2000 from Supplier #2 on our Supplier List, and used machines are even less. (A link to our Supplier List is given at the top of our forum pages.)

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: 08-17-2013 04:25 PM by vsheline.)
08-17-2013 04:19 PM
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kittyhawkchild Offline

Members

Posts: 19
Joined: Aug 2013

Machine: Resmed auto s9
Mask Type: Full face mask
Mask Make & Model: Quatro for her
Humidifier: Resmed s9
CPAP Pressure: 9
CPAP Software: Not using software

Other Comments:

Sex: Female
Location: Huntersville,NC and Poulsbo, WA

Post: #10
RE: cerebral apnea
I cannot thank you enough for all that information.

After 4 months of continuous use, the software from my machine says that my AHI per hour is 7.3. Apnea index is 6.2, obstructive is 1.4, central 4.7. The Hypopnea index is 1.1. Pressure is 8.6 to 14.5.

The software also shows that I have been using the mask for 2:44 hours when I actually used it from 2 AM to 12 noon! I sleep and use the machine for the same number of hours almost every night at the same times (1:00 AM to 11:00 AM) and the time that it shows ranges from the correct number of hours to 8 hours less than I have used it. That must through off all of the readings.

I have told the doctor and LinCare about this discrepancy. People have done nothing and I am on vacation for the next 6 weeks because we are retired.
08-17-2013 07:25 PM
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