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confused -new sleep doctor has stopped cpap
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richb Online

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Other Comments: Idiopathic Central Apnea

Sex: Male
Location: Vermont

Post: #11
RE: confused -new sleep doctor has stopped cpap
(03-17-2016 08:01 PM)Sleeeppp Wrote:  :oh-jeez:Thank you for all the advise - affirms what I've been thinking.....

This new specialist is very senior in his field of sleep/ respiratory med (can't say too much....). When I went in to see him I had all reports, a report of data from SleepHead and several "Daily Events" showing the breakdown of apneas and the 'weird breathing' I do (and have done since a child).. I must say he (the doctor) looked gob-smacked when I handed all this information - and when my husband pointed to a few graphs and said "is this Cheyne/Stokes or periodic breathing?". The doctor said he wasn't sure and asked what I did for a living - I suppose 'one should know one's place'
:I

So, Plan C - find another sleep specialist...... Oh-jeez

That's what I had to do. I found a good Doc at the University affiliated teaching hospital about an hour and a half away. My local guy finally admitted that he didn't treat Central Apnea.

Rich
03-17-2016 08:12 PM
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Sleeeppp Offline

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Sex: Female
Location: Aust

Post: #12
RE: confused -new sleep doctor has stopped cpap
(03-17-2016 03:06 PM)richb Wrote:  When you do your Doctor shopping, be sure to ask if they are familiar with Central Apnea and Periodic Breathing. If you have a teaching hospital in your area you might want to start there. The standard treatment for Obstructive Apnea (CPAP) does not work for most cases of Central Apnea. An ASV machine is the usual treatment for Central Apnea. You will want to confirm that your new Doc will prescribe an ASV machine if your diagnosis is Central Apnea. Note that I mentioned Periodic Breathing. Periodic Breathing will look like Hypopneas during a Sleep Study. The Periodic Breathing can cause desaturations of O2 that keep you fromn sleeping deeply. A standard CPAP machine will convert Periodic Breathing Hypopneas to Centrals therefore the increase in Centrals. You did not mention that you had Obstructive Apnea events during your Sleep Study. Your Doc may have been counting Periodic Breathing events as if they were Obstructive in nature. Look at your sleep Study to see what was reported. An ASV machine can treat both Obstructive and Central Apneas. The initial settings might be different depending on whether Obstructive events are present. Sleeping on your side can also eliminate many Obstructive events but will not change the Centrals. Stay in touch and keep reading threads on this site related to Central Apnea.

Rich
Thanks Rich,

I came to the same conclusion after reading many, many articles online. I initiated this because I was concerned about my pattern of breathing (fast and shallow, stop, take regular breaths... repeated pattern). My family and others have told have also noted this (also I spent 4hrs in post op - nurse sat with me and noted this)...

(just spoken to a lady from my cpap supplier - she has recommended another doctor.....so - on to plan C)

Thanks again
03-17-2016 08:23 PM
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0rangebear Offline

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Post: #13
RE: confused -new sleep doctor has stopped cpap
Always remember your doctor works for yo;You are his customer, if his services are not meeting your needs.... fire him.

According the World heath Organization: http://www.who.int/gard/publications/GARD%20Book%202007.pdf....."Co-morbidities of Obstructive sleep apnea syndrome are associated with many adverse squeal.. Behavioral consequences include daytime sleepiness, impaired concentration and neuropsychological dysfunction cardiovascular disorders, particularly hypertension, The excessive daytime sleepiness and associated behavioral consequences of obstructive sleep apnea syndrome are reversible with effective treatment, and there is emerging evidence that cardiovascular complications also beneļ¬t from therapy"

I say if your doctor is unaware of this scientific principle move on.

2004-Bon Jovi
it'll take more than a doctor to prescribe a remedy

Observations and recommendations communicated here are the perceptions of the writer and should not be misconstrued as medical advice.
03-17-2016 09:27 PM
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Phill Offline

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Post: #14
RE: confused -new sleep doctor has stopped cpap
"Always remember your doctor works for yo;You are his customer, if his services are not meeting your needs.... fire him."

We run a different system here, sorry to drone on about it.
The socialised medical system we work is on the whole run in the interests of the employees.
Your choice of doctor is largely nil, unless you choose to buck the system by going private, either paying through insurance or in cash$$$, in which case you jump the waiting list and get seen in more pleasant surroundings. Many people object to this system, either for political reasons or on the grounds of having paid through their taxes, why should they pay twice.
Oh, the doctor you see on the private paying$$$$ is likely to be one you may well have seen under what we call the NHS.
The option is yours.

Your second paragraph is most interesting.
Excessive daytime sleepiness, while not exactly excessive, I must admit to resting my eyes after lunch on once in a while, but at the age of 68 I don't see that as a problem, and never any problem with sleepiness when driving, or should I say when I was allowed to drive.
My alleged apnea diagnosis came up during investigation for epilepsy, the quacks are unable to agree as to whether there is any connection between the two, though your text would indicate a connection along with several websites, which like this site give far more information than the quacks seem to manage. Dont-know
(This post was last modified: 03-18-2016 11:39 AM by Phill.)
03-18-2016 11:37 AM
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0rangebear Offline

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Machine: ResMed AirSence 10
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Post: #15
RE: confused -new sleep doctor has stopped cpap
(03-18-2016 11:37 AM)Phill Wrote:  "Always remember your doctor works for yo;You are his customer, if his services are not meeting your needs.... fire him."

We run a different system here, sorry to drone on about it.
The socialised medical system we work is on the whole run in the interests of the employees.
Your choice of doctor is largely nil, unless you choose to buck the system by going private, either paying through insurance or in cash$$$, in which case you jump the waiting list and get seen in more pleasant surroundings. Many people object to this system, either for political reasons or on the grounds of having paid through their taxes, why should they pay twice.
Oh, the doctor you see on the private paying$$$$ is likely to be one you may well have seen under what we call the NHS.
The option is yours.

Your second paragraph is most interesting.
Excessive daytime sleepiness, while not exactly excessive, I must admit to resting my eyes after lunch on once in a while, but at the age of 68 I don't see that as a problem, and never any problem with sleepiness when driving, or should I say when I was allowed to drive.
My alleged apnea diagnosis came up during investigation for epilepsy, the quacks are unable to agree as to whether there is any connection between the two, though your text would indicate a connection along with several websites, which like this site give far more information than the quacks seem to manage. Dont-know

Phil
I live here in beautiful Colorado and even though will have a plentitude of doctors,information sources, and the freedom choose and think freely. (even smoking pot is legal here) Nevertheless; there is a active Apnea Mafia, on a witch hunt to blame every accident and illness on sleep apnea and obesity. For the last 17 years every time I have been to a doctor- from getting my teeth cleaned- to stiches in the emergency room- to donating blood- I get asked if I have been tested for sleep apnea. Because I am obese.-Even though I have none of the symptoms mention above. The only indicator I have on the checklist is a 23"neck.

So I obtained a APAP machine and am attempting trying to see of the Therapy will do anything for me.

I have found the Forum to be very helpful

2004-Bon Jovi
it'll take more than a doctor to prescribe a remedy

Observations and recommendations communicated here are the perceptions of the writer and should not be misconstrued as medical advice.
(This post was last modified: 03-19-2016 10:36 AM by 0rangebear.)
03-19-2016 10:18 AM
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Phill Offline

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Post: #16
RE: confused -new sleep doctor has stopped cpap
"I have found the Forum to be very helpful"

That is very true.
03-19-2016 10:28 AM
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Sleeeppp Offline

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Post: #17
Smile ASV for a month = fantastic results!
I started on CPAP 10 (then 14) last year and the results I got were no surprise (to me) - AHI got down to less than 10 on the rare occasion. My (then) sleep doc was pleased with my progress despite the poor outcome, very little sleep (5mths) and hypopneas increasing and/or converting to centrals.
.....So on to plan B - new sleep doc..... he suggested getting off cpap and sleeping on my side and losing weight... Well, I had been sleeping on my side and trying to lose weight (though insomnia would make this difficult according to the research)....

.....So on to plan C - another sleep doc - he did blood tests and came to the conclusion that it was the increased pressure that 'caused' the hypopnea and centrals and recommended I not use Cpap, lose weight and not take anti-histamines at night because they aggravate my "bad restless- leg problem". .... Hello!!! I have a slight restless-leg issue the didn't cause any arousals and the hypopnea and centrals (and patterns of periodic breathing throughout the night) were shown on my sleep study -
without cpap/ prior to cPap!!!

....So on to plan D - I bought a re-furbished ASV machine and starting using it on the default setting AutoASV ps 3- 15, Epap 4 - 15 .... with a Amara View FF mask....
My results went from AHI 20 (pre pap) to AHI10 on cpap .... to(the past 4weeks) AHI 1 to 0.0 on the ASV AND I'm sleeping!!!! I can see patches throughout the night where the machine is adjusting to periodic breathing - it works hard.
The outcome has been better than expected but the process is disappointing. I would not recommend anyone try this on their own but I felt I needed to explore this for myself.
05-28-2016 01:10 AM
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richb Online

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Post: #18
RE: confused -new sleep doctor has stopped cpap
Hi Sleeeppp,

A lot of so called sleep Docs have no idea how to treat Central Apnea/Periodic Breathing. It took me nearly a year to finally get my ASV machine.

Rich

Apnea Board Member RobySue has posted a Beginners Guide to Sleepyhead Software here: http://www.apneaboard.com/wiki/index.php...SleepyHead
05-28-2016 06:55 AM
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Asjb Offline

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Post: #19
RE: confused -new sleep doctor has stopped cpap
Hello Sleeepp - many congratulations on your determination and perseverance. The process can be a joke can't it? but fantastic you finally have the machine you need.

And RichB - me too,a year, as I posted in this thread in 2015:
http://www.apneaboard.com/forums/Thread-...t-helping.

My ASV continues to be superb - periodic breathing very rare, AHI average less than 1, pO2 gone up to 96% average (94% on APAP) and etc. Delighted with it.

................................................................................​......................
All my opinions are only as a xPAP user trying to help another xPAP user.
No suggestions I may make should be taken as medical advice.
If you have medical concerns you should see a doctor (but you have a basic human right not to take their advice!)


My current pressures: Auto-ASV. EPAP 10-13. PS 3-10
05-28-2016 10:36 AM
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Sleeeppp Offline

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Post: #20
RE: confused -new sleep doctor has stopped cpap
It seems its the same all over the world with these docs.... very frustrating!

I've decided to continue using the ASV because the results speak for themselves and take this data to sleep doc 3 - then (may be) he'll recommend a trial....lol
05-28-2016 11:19 PM
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