CPAPtalk.com

Those who have good sleep medicine doctors are among the lucky ones. I have visited five over the years and none appeared to know more than I did about my complex apnea. The last one openly admitted it and sleep medicine is his specialty.

Here is the usual link: http://www.afsashoot.com/PAT1.html

-SWS wrote:A couple other experiments (with backup=auto) might entail: 1) moving IPAP_min closer to IPAP_peak average, and/or 2) moving EPAP closer to IPAP_peak average.

Perhaps generating more pressure induced Hypopnea than needed at EPAP 14.

You may think about using SWS's statement "1)" tonight. If I understand this statement correctly, you may want to experiment with EPAP 13 and IPAP_min 15. I understand that IPAP_min 15 is not comfortable.

Wish there was someway you could get your hands on a VPAP Adapt (Enhanced) SV.

Banned

CROWPAT wrote:Those who have good sleep medicine doctors are among the lucky ones. I have visited five over the years and none appeared to know more than I did about my complex apnea. The last one openly admitted it and sleep medicine is his specialty. ...

Join the crowd. I've had problems with sleep onset central apneas with arousal and central apneas during sleep for almost 15 years. It's gotten worse, much worse. But the pulmonologist was dismissive of it. Fortunately, he did a good job with CPAP and then BiPAP therapy. No complaints about his ability to address the needs of the vast majority of his patients. However, he did not do what I consider an excellent doctor should do - recognize his limits.

Due to neurological issues, I tried several neurologists, including a couple who specialized in sleep medicine. One was very dismissive and felt I did not need a BiPAP unit. He ordered a new study that showed ... I need a BiPAP unit. DUH! The other felt that central apneas are very rare, so do not really need to be addressed. Even though I complained at the time that I had LOTS of problems going asleep, not just while asleep.

I finally attained a diagnosis for the neurological issues that made sense. There was nothing much that could be done, and at about that time, I started to have problems with my non-insurance company. I gave up and just used what I had.

About three years ago my BiPAP unit finally died. I fell back to my CPAP unit. And I started to hunt for a new doctor and a new insurance company. (We fortunately do have choices with my company). I found my current doctor, who asked questions and was not dismissive. That makes a huge difference. Unfortunately (probably due to a lack of sleep), I did not get rescheduled for a follow up with him until a couple years later, when my problems with central apneas and sleep onset problems were very severe.

I complained again about sleep onset problems and the central apneas (my wife noted that as an issue many, many years ago). He ordered tests including a sleep study. Well, both the tests and sleep study show I do not breathe as much as I should. And the sleep study made it very clear that central apneas now overwhelm my obstructive events (more than six to one).

Still, he did not get the sleep onset issues were a problem. I don't really blame him. I was severely sleep deprived when I saw him and there was a lot to absorb. But I was persistent when I went for a followup visit and noted it is a real problem that needs to be addressed. Bingo! He did not dismiss it and has helped me address it.

Plus, he is an excellent doctor. Though he specializes in sleep medicine, he admits my case is unusual and we need to work together to get my sleep under control. Rather than dismissing the symptoms, he uses data to confirm or refute the symptoms. I've known for years that something is wrong. He finally did the right thing. He tested for issues. He listened to my symptoms and is helping me manage them.

So, don't feel alone. For some of us, this can be quite a journey. Fortunately, here and together we try to help one another.

So, I hope you find better sleep along the way! Most people do not appreciate what a blessing it is to sleep peacefully. You do. Those who struggle to sleep peacefully know what a blessing it should be. And it is the greatest wish I can offer to you.

Will try 13/15-22/Auto/Rise 3 tonight.

John, thanks for your lengthy synopsis of your efforts and experiences.
I do NOT have any problems falling asleep at home and am usually fully asleep in 5-10 minutes.
The one thing I have noticed on the BiPapAutoSV is that when my "Breathing on my Own" number is 99.9% I feel better even if some of the other numbers are not as good as usual.

CROWPAT wrote:I should not have intimated that no one cares. That was crude and not representative of how much I have always appreciated the advice given by good people on this board. I am going to try 14/14-22/Auto/Rise 3 tonight and see what happens. I know that I have gained about 20 pounds since me last titration so additional rpessure may be warranted. We'll see how it goes tonight. All of these experiments have left me pretty tired. I NEVER before made nightly changes. I always went about a week with a change to better evaluate its effectiveness. I'll report back in the morning.

20 lbs gain is one hell of a factor for disrupting results. I know it is a tough challenge but is there anything you can do to bring that down. Added weight may be your real problem & respiration results just tagging along. The added weight will be compounded by any tendency to sleep on your back.

You really have two challenges, getting that weight down & tuning the machine for optimal results.

Good luck with this

DSM

JohnBFisher wrote:

-SWS wrote:... However, I always get my doctor in the loop when experimenting with significant pressure or modality changes. That is still my recommendation. ...

The more I read about the complexity of the respiratory system, the more I tend to also agree it is important to involve a doctor in the process. I am also fortunate that my doctor wants me to bring the information from my machine. And he is open to my experimenting, as long as I (a) define clearly what I am changing, and (b) substantiate the results with data.

Not all doctors feel comfortable with that type of situation. As I note, the more I read the more I understand their reservations. Fortunately, my doctor appears to be willing to work with me to help me attain the best possible therapy. SWS, I think we are both very fortunate.

I can hardly wait to get my new machine. A big thanks to everyone on this forum who shares their knowledge (and cautions) as I start to try to straighten out my sleep.

John

Agreed, after a while it does become much clearer the extent that Timed Bilevels and SV type machines are far too complex for us to be telling people how to play with unless they exhibit a very good understanding of the significance of the changes being made. If you look over most posts to do with such machines placed here in the past year or so, you will generally find the 1st suggestion most regulars make is for the person tweaking their Timed Bilevel or SV, to work with their therapist or if they have no faith in that therapist to go look for another one.

What we have no real insight to here, with many such users, is what the actual reasons were that the original doc prescribed the machine. Nor do we have the patients' medical history nor are we usually able to view the patient's appearance to gather clues as to why some situations in their data may occur.

I believe most of us have become very wary of making anything but simple suggestions in regard to some adjustments on these class of machines. Not so much because we believe we will damage the patient as much as they may be messing up their own therapy & reducing its effectiveness rather than improving it. There is a fine line between helping someone who stumbles their way through what they are changing (with little understanding of why they are making the change) versus helping those who have a high aptitude for analyzing the effects of the changes & being able to really improve their therapy.

When it comes to straight cpap & Auto, the general regular poster is easier able to make suggestions regarding tweaking. There are so few adjustments that can be made. But many here are able to offer some help to others in reading their charts.

The real hope with cpap therapy is that as the machines get more sophisticated & intelligent, they become better at making needed adjustments themselves & the user is less at the mercy of any inadequately trained 'professional' & also any of us over-enthusiastic amateurs.

DSM

Muffy wrote:

dsm wrote:Muffy

Life just isn't that serious - there are times when a smile achieves a greater imapact than a brickbat.
Cheer up!.

DSM

You are such an asshole.

Let me try to explain this so that you might understand.

If all I choose to post is a comment that I believe Banned's setting selections are arbitrary, that is within my right, as is the fashion that I do it.

I have no obligations to do anything else. For that matter, I have no obligations to do even that.

I do not have to "show that I'm mature", "explain complex information", "be open to reason and persuasion", "have a heart of gold", "use a CPAP machine", "be humble", "learn something from those that do" or even "be a competent clinician".

It is truly beyond belief that I compose a humorous response, you somehow think you have the right to decide what and how I post like you're The Head Moderator and then go

dsm wrote:Life just isn't that serious - there are times when a smile achieves a greater imapact than a brickbat.

when I tell you to go FO.

Save the judgements, sonny, you ain't the boss of me.

Muffy

Muffy

Think what you will, but, saying what you think in such a vulgar manner in a public forum harms your image as a person here.
Out of respect for the others please lets take this level of interaction somewhere else. Such bitterness is lost here. If I have in the
past offended you I am apologizing & would very much like to bury that & move on. Please accept my apologies.

Cheers

DSM

dsm wrote:Muffy

Think what you will, but, saying what you think in such a vulgar manner in a public forum harms your image as a person here.
Out of respect for the others please lets take this level of interaction somewhere else. Such bitterness is lost here. If I have in the
past offended you I am apologizing & would very much like to bury that & move on. Please accept my apologies.

Cheers

DSM

oxoxoxoxox

Muffy

Muffy's highjack of this thread was sadly successful as far as I am concerned.

The last night of my data is at the usual link: http://www.afsashoot.com/PAT1.html

I consider the experiment over and done, with no resolution of anything. Nevertheless, my thanks to those who tried to help me.

-SWS wrote: But, CROWPAT, I would like to go back to the beginning of your thread and walk through how I would design a series of experiments if you are interested in hearing me babble.

note: I accidentally lost most of my original post above, while editing

SWS, Please continue with your plan of attack. I have plenty of statistical analysis background so numbers are my friends.

CROWPAT wrote:SWS, Please continue with your plan of attack. I have plenty of statistical analysis background so numbers are my friends.

Lets work through all the issues carefully. Perhaps we can do a list of factors that are going to affect the settings & can comment on them ?

DSM

(PS am sorry for the side spat that took place )

-SWS wrote: But, CROWPAT, I would like to go back to the beginning of your thread and walk through how I would design a series of experiments if you are interested in hearing me babble.

CROWPAT wrote:SWS, Please continue with your plan of attack. I have plenty of statistical analysis background so numbers are my friends.

dsm wrote:Lets work through all the issues carefully. Perhaps we can do a list of factors that are going to affect the settings & can comment on them ?

It looks like DSM has a very specific group exercise in mind, CROWPAT. That's a different albeit viable approach than I had in mind:

Dsm, please continue with the group-exercise approach you have in mind. My trigeminal neuralgia is bothering me enough, that quite frankly I wouldn't mind taking a back seat for a while if you guys don't mind organizing...

Thanks.

SWS

I'll give it a go. I would welcome assist/direction from the analytical minds among us.

Crowpat, Can we just go over a few details to help reset the baseline. If you don't want to answer any try PMing to me.

1) Age
2) Weight (we have on record a significant weight gain recently)
3) Health status (e.g. known respiratory issues apart from OSA/CA - plus any other likely influencers on respiration (like heart status) )
4) A fair assesment of your current level of fitness
5) Who recommended the Bipap AutoSV - what reasons did they give
6) What reasons were given for the original settings

DSM

dsm wrote:SWS

I'll give it a go. I would welcome assist/direction from the analytical minds among us.

Crowpat, Can we just go over a few details to help reset the baseline. If you don't want to answer any try PMing to me.

1) Age
2) Weight (we have on record a significant weight gain recently)
3) Health status (e.g. known respiratory issues apart from OSA/CA - plus any other likely influencers on respiration (like heart status) )
4) A fair assesment of your current level of fitness
5) Who recommended the Bipap AutoSV - what reasons did they give
6) What reasons were given for the original settings

DSM

64, 250, PAROXYMALSUPERVENTRICULAR ARYTHMIA - OTHERWISE EXCELLENT, fitness very good, sleep doctor in hopes of treating centrals, he gave me the prescription after six months with a loaner that was set wide open. I worked with the data to settle on E12, I14-22, Auto, Rise 6.

AHI has been at 2.0 average for well over a year.

Unresolved symptom: tired throughout the day but fully functional. 3-5 mile walks do not change the symptom. Thyroid, BP, and other possible causes investigated by doctors without results. CT of brain normal. Significant work load that never stops, but that has been the way I have always worked.
Medications not a factor based on stopping one at a time and staying off it well beyond their half life until they were out of my system. Allergy tests did not reveal anything other than normal allergies which are being treated with nasal rinse/spray. No other health issues.

I trust this gives you what you asked for and quite a bit more.

The ball is back in your court.