Hello Guest, Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.

or Create an Account


New Posts   Today's Posts

Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
#1
Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
After almost 20 years of needing a machine and a couple failed attempts, I'm getting closer to a decent nights sleep but I need some help.  I'm currently using a Dreamstation BiPAP auto with a Simplus full face for CA possibly mixed apnea after failing on CPAP therapy a couple times previously. 

Most recently I've gotten a better (although not perfect) handle on my leak problems, but I get periods during the night where it seems like I get out of sync with the machine and I end up feeling suffocated.  It's like the machine is either trying to auto titrate and making a really bad choice, or it's trying to not go positive when I exhale and it ends up stalling for an extended period of time.  The machine is definitely a major improvement over my previous CPAP attempts, I don't think it's making my sleep worse like previous CPAPs, it may even be a little better than no-machine, but I'm not feeling rested when I get up and the machine is definitely making me uncomfortable mid-way through the night more nights than not.  I should mention that even with humidification it still dries me out (I literally have diminished ability to whistle since I started therapy again) but that seems to be improving a little. 

I really need help not feeling suffocated by the machine. I'm waiting for a copy of the actual titration study from a couple months ago but I don't see anything really jumping out at me when looking at the logs in OSCAR.

For some history on my situation: almost 20 years ago I was diagnosed with Central Apnea after my wife told me "you stop breathing while you sleep".  I did well on bipap in the initial study but was given a CPAP because my pulmonologist at the time thought bipaps were not a first choice for CA (even though the report said bipap), I tried for several months but never could adjust to the CPAP and gave up.  Two years ago I tried again, went to the pulmonologist, told him I was previously diagnosed with CA and responded better to bipap, the doctor gives me a home sleep study, I asked why a home study when they don't do CA well since I was previously diagnosed he insisted on using the home first.  I get the results and it the report says something to that the home study is limited but I have apparent CA (gee thanks everyone).  The doctor then gives me a CPAP, again I ask why not a bipap when the last good bit of sleep I got was on the bipap in that original sleep study, he insists go CPAP.  I try for a couple months and fail again. 

With the CPAP the second time around (ResMed S10 auto) I had multiple issues and could not adjust.  I tried pretty much every major mask, tried the gels, I would constantly get leaks at the bridge of the nose about 3-4 hours into the night.  If/when it wasn't blowing air in my eyes I would occasionally get this feeling of being suffocated in the middle of the night, it seems like the machine would not blow until I started to inhale, which with CA doesn't happen sometimes.  The doctor adjusted pressures a few times but to no avail, my sleep was far worse fighting with the machine and I gave up again.

I really want to sleep, any and all help is appreciated.
Post Reply Post Reply



Donate to Apnea Board  
#2
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Looks like I can't edit my original post but attached are screenshots of OSCAR from the last three nights. 

Last night wasn't too bad (although the exhaust holes on my mask started whistling)

I apologize that the screen shots aren't formatted exactly according to the guide but I didn't see that until I went to post and I don't have time this morning to redo the shots.


Attached Files Thumbnail(s)
           
Post Reply Post Reply
#3
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Welcome to the forum.

I would say you are failing bipap again.
Not surprising since neither CPAP nor bipap are designed to treat centrals.

Let's see what is going on
Please post 2 minute views of three different centrals so we can see what is happening.

A PS of 6 without ASV for someone with centrals? The only reason for that would be to eliminate obstructive events, also a fail.

When you do have obstructive events they tend to be in a cluster. This indicates a chin tuck, easily fixed with a soft cervical collar.

The continued presence of flow limits and RERAs indicate you need more PS, contraindicated by your centrals.

I would request an ASV titration study frequently.

The conventional road to ASV is to
1. Fail CPAP
2. Fail bipap
3. Titrate ASV
4. Succeed at ASV

Call your doc and say this is still not working, when can we titrate an ASV. This call needs to be made frequently.
Post Reply Post Reply
#4
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Your settings make no sense at all. I agree with Bonjour and also would like to see a few zoomed segments of the flow rate charts. I think you need to change up settings, and possibly consider a soft cervical collar based on the clustering of obstructive events. My preliminary suggestion for settings, pending a closer view of flow rate to evaluate flow limitation is:

Mode: BiPAP Auto
EPAP min: 9.0
PS min: 3.0
PS max: 5.0
Max Pressure: 18.0
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files

How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply



Donate to Apnea Board  
#5
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Thank you both for your time.  Attached are three screen shots of some apneas.  I tried to grab where there was multiple in a 2 minute period or mixed.

This weekend I will try adjusting my PS values and upping the pressure (I was originally at 14, I upped it to 15, was looking to up it incrementally) .

I am also going work on changing my sleeping position.  I won't say no to trying a collar but I don't like t-shirts with tight necks, not sure that I'll adjust to collar.  

The good news is I'm tired as heck this morning and woke up earlier, mainly because I was out of distilled water and didn't use my machine last night, so I guess even though it's less than optimal it's still an improvement over what I was getting before. 

I'm also going to make the call to the doctor today and try to work on finding a sleep specialist on the hope that MAYBE I can find a doctor that will care as much as people like yourselves on this board.

Thanks again for your help.


Attached Files Thumbnail(s)
           
Post Reply Post Reply
#6
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
When you increased the max pressure you should also have increased the minimum pressure I suggest you raise the epap to 10 as well
Post Reply Post Reply
#7
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
The first chart is pretty classic Central apnea with the primary culprit needing that you are washing too much CO2 from your system. This indicates a need to reduce your PS.

Did you ever wonder what what your chart would look like if a man is getting choked?

For the last two charts there is no Central apnea. It is either you are sleeping with someone sitting on your chest with their thumbs on you windpipe squeezing, admitedly unlikely, or you are kinking your hose/windpipe. This is telling me that much of your labeled centrals are likely centrals.

The fix is likely as simple as keeping your neck straight. Look at anti snoring collars and sleep collars. And the fit we are looking for is a loose one. Just tight enough to keep the chin up.

In addition try a flatter pillow, use only one pillow.
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Soft Cervical Collar
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Post Reply Post Reply



Donate to Apnea Board  
#8
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
I'm going to follow...the advice you are getting is helping me too.
DaveL
Compliant for 30+ years

I'm just a cpap user like you. I don't give medical advice. I hope to learn from you, and share my experiences with you. 
Information on Apnea Board Forums or on apneaboard.com should not be considered as medical advice. Seek the advice of a physician before seeking treatment for medical conditions including sleep apnea. Information posted on the apnea board web site and forums are personal opinion only and not necessarily a statement of fact.  Sleep-well

Post Reply Post Reply
#9
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Well, I do hope the adjustments work to help out. After several attempts and fails a different level of machine might be proven necessary. I am aware of only 2 that are successful to attack central apnea, an ST-A in AVAPS and better is an ASV. If it is decided a machine for centrals is in play, we'll talk then. I've been there, you're CPAP/BPAP fails is close to my xPAP walk at the place on the path you're on.

Listen to bonjour and Sleeprider. My addition is take notes on complaints, some specific things where CPAP and BPAP cause you to think it's a fail. Also include How You Feel. Then practice how to effectively complain about this. I am serious. Half of my getting an ASV was effective complaining. Best wishes on your victories.
Dave

I'm not a doctor in real or fictional life. My posts include opinions based upon user experience and researched info regarding CPAP therapy and should not be considered medically professional directions or advice.


OSCAR Chart Organization
Mask Primer
Dealing With DME
Post Reply Post Reply
#10
RE: Almost 20 Years and I need help - CA with a BiPAP and I'm still tired
Ok so Friday night, dead tired after a long day and then an awards dinner, I go to the store to buy distilled water, get in bed and fell asleep making the changes to the settings, no mask. 

Last night I made the suggested changes; Fixed Bipap to AutoBipap Max 18, min 9, PS 3 < 5, single pillow.  I put the mask on and my first thought is, I must have screwed up the settings, there was hardly any flow.  Pull out my phone, double check this thread, verify the machine, they're just as suggested.  I start wondering if its just too gentle a ramp, maybe I should shorten ramp or up the minimum pressure a little and I proceed to fall out.  I woke up in the morning and my first thought again is, man this thing is barely flowing, I'm surprised I didn't wake up feeling suffocated, I bet the data is going to look insane.  Then I started to realize I felt reasonably rested (although I'm up 3 hours and I'm yawning already).  I check the data and it's not worse than the other nights and not as bad as I thought.  

As I'm looking at my graphs, I notice that last night my OA was higher than my CA  but some of the patterns leading up to them look similar.  I'm wondering if event labeling might not be perfect representations of what's going on or if there's more to understand by the combination of flows and events.  I'm not (yet) sure what I'm looking at but my gut says that I have multiple things contributing to on another.  

So I guess my questions are at this point:
1) Does anyone have recommendations for adjusting going forward
2) Is there a good guide/wiki on interpreting the data itself.  For example you mentioned washing out too  much CO2, how do you tell that from the flow and event patterns.  I notice that my CA's are preceded by a lull in flow, a blip, then a lull which is marked as the CA event. 

I guess to answer the previous question, yes I do wonder what the graph would look like with someone sitting on their chest.


Attached Files Thumbnail(s)
           
Post Reply Post Reply



Donate to Apnea Board  


Possibly Related Threads...
Thread Author Replies Views Last Post
Question In anticipation of my BIPAP Re: New Thread Plmnb 505 7,081 7 hours ago
Last Post: Plmnb
  Still Tired After Many Years Sybert1ger 6 255 01-19-2020, 12:54 AM
Last Post: muziccity
  [Equipment] Travel BiPAP? ddivins 6 226 01-17-2020, 11:47 AM
Last Post: ragtopcircus
  2.5 years on CPAP, still very tired ahunix 16 474 01-16-2020, 04:50 PM
Last Post: bonjour
  Need to increase BiPAP air pressure? nitaslenz108 17 334 01-14-2020, 09:49 AM
Last Post: Sleeprider
Grin Optimizing BiPap settings Ctyankee 1 145 01-12-2020, 11:31 AM
Last Post: Sleeprider
  Bipap settings E.W. 2 153 01-05-2020, 10:28 PM
Last Post: E.W.


New Posts   Today's Posts






About Apnea Board

Apnea Board is an educational web site designed to empower Sleep Apnea patients.