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quick advice? seeing the Dr this week
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ranger100 Offline

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Posts: 13
Joined: Dec 2014

Machine: REMstar Auto 550P
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: none
CPAP Pressure: 8
CPAP Software: SleepyHead

Other Comments: Ranger ....My land is far far away, but I always can find it...A life fought for others is a life wo

Sex: Male
Location: USA

Post: #1
quick advice? seeing the Dr this week
Hello All,

I have an appointment this week to see my OSA doctor. I've used my machine for about 4 years now. About 3 years ago, new doctor, back then my pressures were automatically adjusted up and down. At the time I thought "12" was waking me up, so he set it at a fixed 8. Now that I have the new software it is showing I'm having CSR events, many during a recent relocation/moving. I can't say I'm sleeping great now and just wondering if I should go back to letting the machine ramp it up automatically to 12 if I need it and wanting to breath deeply.

Wondering if I should go back to the old setting?

I have additional sleep and medical issues ....(narcolepsy and insomnia) 100% compliant from day one, except obviously when I fall a sleep on the couch, in church, etc.

Your thoughts and experiences???

Sincerely,
ranger100
02-03-2015 12:30 AM
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Ghost1958 Offline

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Posts: 957
Joined: Aug 2014

Machine: PRS1 Series Sixty Auto Aflex
Mask Type: Nasal mask
Mask Make & Model: F&P Eson
Humidifier: PRS1 with Heated Hose
CPAP Pressure: 10.5 min 16 max
CPAP Software: SleepyHead EncoreBasic

Other Comments: Moderate to Severe SA Obstructive. Rapid O2 desat off the machine.

Sex: Male
Location: KY

Post: #2
RE: quick advice? seeing the Dr this week
Never had CSR but I dont think a regular auto pap is meant to treat that. Others who know more will chime in Im sure
02-03-2015 12:34 AM
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anette Offline

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Posts: 2
Joined: Jan 2015

Machine: Respironics one
Mask Type: Nasal mask
Mask Make & Model: unsure
Humidifier: respironics
CPAP Pressure: 7
CPAP Software: SleepyHead

Other Comments:

Sex: Female
Location: Illinois

Post: #3
RE: quick advice? seeing the Dr this week
Have you had any lab work done for: B12 levels, D3, ferritin levels, and chronic underlying infections like: lyme disease, chlamydia pneumonia, mycoplasma pneumonia, Epstein Barr Virus? These can all be chronic, and cause all types of dysfunction, worsening or maybe even sometimes causing some of the many problems that are considered "idiopathic"
02-03-2015 12:41 AM
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ranger100 Offline

Members

Posts: 13
Joined: Dec 2014

Machine: REMstar Auto 550P
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: none
CPAP Pressure: 8
CPAP Software: SleepyHead

Other Comments: Ranger ....My land is far far away, but I always can find it...A life fought for others is a life wo

Sex: Male
Location: USA

Post: #4
RE: quick advice? seeing the Dr this week
(02-03-2015 12:41 AM)anette Wrote:  Have you had any lab work done for: B12 levels, D3, ferritin levels, and chronic underlying infections like: lyme disease, chlamydia pneumonia, mycoplasma pneumonia, Epstein Barr Virus? These can all be chronic, and cause all types of dysfunction, worsening or maybe even sometimes causing some of the many problems that are considered "idiopathic"

Thank you for your quick response Smile
Yes, also dealing with Celiac disease. most all of those are tested, I'm on a therapeutic dose of "D", eat organic and gluten free.
Thanks again for the fast response!
ranger100
02-03-2015 12:50 AM
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TheManseHen Offline

Preferred Members-2

Posts: 243
Joined: Jan 2015

Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #5
RE: quick advice? seeing the Dr this week
New here myself, but I think if you keep sticking around you'll find your way. It seems very odd to me for the doc to just have said "oh, 12 is to much..go with 8" and not follow up or help you tweek.

Best wishes,

The Manse Hen
02-03-2015 02:26 AM
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ranger100 Offline

Members

Posts: 13
Joined: Dec 2014

Machine: REMstar Auto 550P
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: none
CPAP Pressure: 8
CPAP Software: SleepyHead

Other Comments: Ranger ....My land is far far away, but I always can find it...A life fought for others is a life wo

Sex: Male
Location: USA

Post: #6
RE: quick advice? seeing the Dr this week
(02-03-2015 02:26 AM)TheManseHen Wrote:  New here myself, but I think if you keep sticking around you'll find your way. It seems very odd to me for the doc to just have said "oh, 12 is to much..go with 8" and not follow up or help you tweek.

Best wishes,

The Manse Hen
Thanks for the reply!
It's not really his fault, It's 50/50 me him. I had so many doctors, tests and appointments in one year I just got burned out and broke. I could have gone back sooner. Doing everything possible now I know what I'm dealing with, just not with a lot of appointments. When I saw CSR that caused me some concern. I've asked on the narcolepsy forum regarding "riggers (extreme freezing) waking up" and "sweating" during sleep (?) which happens from time to time. Hope I'm not dying when I wake up "freezing..."
Thanks for the reply,
ranger100
02-03-2015 02:48 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: #7
RE: quick advice? seeing the Dr this week
(02-03-2015 12:30 AM)ranger100 Wrote:  About 3 years ago, new doctor, back then my pressures were automatically adjusted up and down. At the time I thought "12" was waking me up, so he set it at a fixed 8. Now that I have the new software it is showing I'm having CSR events, many during a recent relocation/moving. I can't say I'm sleeping great now and just wondering if I should go back to letting the machine ramp it up automatically to 12 if I need it and wanting to breath deeply.

Wondering if I should go back to the old setting?

I have additional sleep and medical issues ....(narcolepsy and insomnia)

Hi ranger100,

Cheyne-Stokes Respiration is a form of Central Sleep Apnea.

Sometimes higher CPAP pressures make central apneas more prevalent.

I suggest you ask your doctor whether any medication you may be taking may be causing the CSR. Some types of pain meds can cause central sleep apnea.

Or, if our circulation is slow, such as because of low pulse rate or because of Congestive Heart Failure, this also may cause CSR.

Also, sleep at high elevation above sea level tends to increase our tendency to have central sleep apneas.

I used to have CSR occasionally before I started using an ASV (Adaptive Servo Ventilator) CPAP machine, which is able to treat both common Obstructive Sleep Apnea as well as the less common Central Sleep Apnea.

Can you tell us your AHI (the average number per hour of apneas plus hypopneas)?

I suggest you print out full SleepyHead reports for several nights with CSR episodes to show your doctor. When you print the report, it may help to zoom in on a 10 minute or 30 minute period around the CSR.

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: 02-03-2015 03:10 AM by vsheline.)
02-03-2015 03:08 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: #8
RE: quick advice? seeing the Dr this week
Hi ranger100,
You are probably already doing this but, Make sure that you right down any questions you have to make your apointment go more smoothly for you, hang in there for more suggestions.
Good luck.

trish6hundred
02-03-2015 09:02 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: #9
RE: quick advice? seeing the Dr this week
(02-03-2015 12:41 AM)anette Wrote:  Have you had any lab work done for: B12 levels, D3, ferritin levels, and chronic underlying infections like: lyme disease, chlamydia pneumonia, mycoplasma pneumonia, Epstein Barr Virus? These can all be chronic, and cause all types of dysfunction, worsening or maybe even sometimes causing some of the many problems that are considered "idiopathic"
Hi anette,
WELCOME! to the forum.!
Much success to you with your CPAP therapy.

trish6hundred
02-03-2015 09:27 AM
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ranger100 Offline

Members

Posts: 13
Joined: Dec 2014

Machine: REMstar Auto 550P
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: none
CPAP Pressure: 8
CPAP Software: SleepyHead

Other Comments: Ranger ....My land is far far away, but I always can find it...A life fought for others is a life wo

Sex: Male
Location: USA

Post: #10
RE: quick advice? seeing the Dr this week
(02-03-2015 03:08 AM)vsheline Wrote:  
(02-03-2015 12:30 AM)ranger100 Wrote:  About 3 years ago, new doctor, back then my pressures were automatically adjusted up and down. At the time I thought "12" was waking me up, so he set it at a fixed 8. Now that I have the new software it is showing I'm having CSR events, many during a recent relocation/moving. I can't say I'm sleeping great now and just wondering if I should go back to letting the machine ramp it up automatically to 12 if I need it and wanting to breath deeply.

Wondering if I should go back to the old setting?

I have additional sleep and medical issues ....(narcolepsy and insomnia)

Hi ranger100,

Cheyne-Stokes Respiration is a form of Central Sleep Apnea.

Sometimes higher CPAP pressures make central apneas more prevalent.

I suggest you ask your doctor whether any medication you may be taking may be causing the CSR. Some types of pain meds can cause central sleep apnea.

Or, if our circulation is slow, such as because of low pulse rate or because of Congestive Heart Failure, this also may cause CSR.

Also, sleep at high elevation above sea level tends to increase our tendency to have central sleep apneas.

I used to have CSR occasionally before I started using an ASV (Adaptive Servo Ventilator) CPAP machine, which is able to treat both common Obstructive Sleep Apnea as well as the less common Central Sleep Apnea.

Can you tell us your AHI (the average number per hour of apneas plus hypopneas)?

I suggest you print out full SleepyHead reports for several nights with CSR episodes to show your doctor. When you print the report, it may help to zoom in on a 10 minute or 30 minute period around the CSR.

Take care,
-- Vaughn
Hello All,
I had a very good meeting with the doctor! He was up to date regarding nutrition, reviewed my records and compliance. He suggested changing my sleep position (face down, sleeping) and said my compliance was excellent 100% and my numbers were very good. That he didn't see any reason to make any pressure changes, that the freezing/sweating could be related to hormonal changes that could be checked. (My AHI numbers are average 1.6) He also said narcolepsy is a bummer to have....to deal with.

Thanks all for your help and comments.
ranger100

PS: I can't imagine not being "compliant" 100%

Also wondering if any of you have "partners with OSA"???
02-13-2015 12:59 AM
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