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Looking for some help - almost 5 years and not feeling a lot better - Printable Version

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Looking for some help - almost 5 years and not feeling a lot better - happydreams - 10-10-2020

I've had my APAP machine now for almost 5 years.  Can't say that I'm feeling a whole heck of a lot better.  There are days when I'm just dragging.  My AHI's are averaging 2.08 over the last year.  For completeness, the standard deviation of my AHI is 0.59.  Now, I know that AHI isn't what I should be chasing, it's feeling better.  In general, the lower the AHI, the better I feel.  But not always.  I've had low AHI days and felt like I'm hammered.  The medical profession that I've been exposed to really hasn't concerned themselves with improving my quality of life.  They've been happy with keeping me under 5.0.  

But I want to feel better.  It's tiring being tired all the time.  So, with your permission, I'm asking for some help.  

Some particulars, a long time ago I was told I actually didn't have apnea, but suffered from micro-arousals.  It was suggested that I had UARS.  My sleep report also mentioned that I rarely get into deep sleep.  They told me UARS was treated the same way as apnea.  So they put me on CPAP on a brick.  Not particularly effective.  Almost 5 years ago I was prescribed an APAP, a Respironics REMstar Auto 560P.  At least this thing has data.  I've fiddled with settings over the years, after reading a lot on this forum.  I'm now at 9.5-16 cmH20.  My 95% pressure is 11.3 (over the whole year).  I've just recently compiled the latest OSCAR.  If someone could forward the link as how to format the views, I'd be glad to post them.  (Was just looking for this and somehow it's escaping me.)

I've read that a standard APAP isn't particularly effective for UARS and a bilevel is far more effective.  I'm willing to try this, with your guidance.  The machine will have to be second hand, as that's what my expenses can handle.

With that short intro, what information do I need to provide so some progress can be made?
Thanks for any and all help!


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 10-10-2020

Found the attachment guidelines.  Here's last night and the previous night.  Let me know if you need zooms.
[attachment=27282][attachment=27283]


RE: Looking for some help - almost 5 years and not feeling a lot better - mesenteria - 10-10-2020

I am quite convinced you'd be a lot happier if you had another machine and an average AHI nearer to 1.0 for about six weeks.  I am not sufficiently learned to say much more, and will defer to other input, but I think someone is going to opine that you'd be better off with a RESMED Autoset or similar machine with different programming working for you.

The way you feel is because your sleep IS being interrupted, and that is happening regularly.  I doubt you're getting much REM sleep.

Please be patient.  Others more savvy than I will happily help you ere long.


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 10-10-2020

If I remember correctly, my REM sleep (from my original sleep study) was in the 20th percentile, quite low.  Would be nice to get a good night's sleep...

Correction:  REM stage was 13% of total sleep time.  Sleep physician claimed that normal is in the range of 20-25%.


RE: Looking for some help - almost 5 years and not feeling a lot better - SarcasticDave94 - 10-10-2020

If you have decent health insurance, they should pay for a replacement machine if you've had this for at least 5 years. If you can do that, you might want to seriously consider the ResMed AirSense 10 AutoSet if an APAP is still the right machine for you.


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 10-10-2020

Hmm, first date of this machine is July 27, 2015, so it's been more than 5 years... So it would seem I'm due for a new machine. However, I'm questioning if standard APAP is the most effective treatment for me. I'm tired and dragging and have been quite a while. That's why I'm here and asking for help. Trying to make a change for the better.


RE: Looking for some help - almost 5 years and not feeling a lot better - Gideon - 10-10-2020

With what I see in your charts you will not qualify for a BiLevel.  The path to a BiLevel is showing a need for one.  This starts with your statement 


Quote:Some particulars, a long time ago I was told I actually didn't have apnea, but suffered from micro-arousals.  It was suggested that I had UARS. 

A 'homework' assignment.  Look thru a detailed 3-minute view of your Flow Rate chart looking for Flow Limitations and Disruptions.  You will need a record of what you find.
Also, form a list of your symptoms, be honest but complete.  READ the list to your doc and offer him a copy.  Why read, because we rarely remember everything we want to say.

I compiled a list of symptoms, it is not complete, it is intended as a thought-starter,  It is in this Wiki article, it is specifically targeting an ASV system but the principles are the same.  http://www.apneaboard.com/wiki/index.php/Justifying_Advanced_PAP_Machines#Symptoms


RE: Looking for some help - almost 5 years and not feeling a lot better - staceyburke - 10-10-2020

I don’t see much to change. I would also suggest a ResMed s10 airsense autoset or if possible a ResMed s10 aircurve VAUTO. Both excellent machines. The VAUTO is a bipap


RE: Looking for some help - almost 5 years and not feeling a lot better - Gideon - 10-10-2020

BiPAP is a trademarked term for the PR BiLevel. It is used like the brand Kleenex is used for facial tissues. BiLevel is the generic term.


RE: Looking for some help - almost 5 years and not feeling a lot better - happydreams - 10-10-2020

(10-10-2020, 08:48 PM)bonjour Wrote: With what I see in your charts you will not qualify for a BiLevel.  The path to a BiLevel is showing a need for one.  This starts with your statement 


Quote:Some particulars, a long time ago I was told I actually didn't have apnea, but suffered from micro-arousals.  It was suggested that I had UARS. 

A 'homework' assignment.  Look thru a detailed 3-minute view of your Flow Rate chart looking for Flow Limitations and Disruptions.  You will need a record of what you find.
Also, form a list of your symptoms, be honest but complete.  READ the list to your doc and offer him a copy.  Why read, because we rarely remember everything we want to say.

I compiled a list of symptoms, it is not complete, it is intended as a thought-starter,  It is in this Wiki article, it is specifically targeting an ASV system but the principles are the same.  http://www.apneaboard.com/wiki/index.php/Justifying_Advanced_PAP_Machines#Symptoms
It's not clear to me that I qualify for bilevel - that's not my question.  I'd like to know if I would benefit from bilevel.  

Trying to do my homework.  Or at least understand what I need to do.  When looking through flow rate, I find many disruptions that are not flagged by normal AHI.  There are many weird flow events. Also the morphology of the flow rate does not look like 'textbook' normal.  Here's an area that's not flagged by anything, but doesn't look so good to me.
[attachment=27291]
[attachment=27292]
[attachment=27293]
Just not sure what I am really looking for.  My flow curves for the most part are ragged.  There are so many places that breathing is irregular, it's hard to document.  On 10/9 after an OA 03:05:37 it took 2 minutes for my respiration rate to settle to normal sleep rates.  One could say I woke up then?  It's not counted as an AHI event, but it is counted as a Variable  Breathing event.  I can attach that in a future post, if necessary.

I will use your symptoms list as a guide to make my own list.  It is a good place to start from.

One note: I do take Pulmicort for asthma.  I find that I seem to be extremely sensitive to the dose.  I find it seems that individual puffs do not seem to have the same dosage from the inhaler.  If I have a good puff, it seems I sleep better.  There's no way for me to measure the actual dosage and be able to use the product.  If I don't use the product, within 3 days my lungs will be wheezing (audibly) while I breathe.