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quick advice? seeing the Dr this week
#1
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
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#2
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
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#3
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"
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#4
(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
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#5
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
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#6
(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
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#7
(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.
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#8
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
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#9
(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
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#10
(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"???
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