PSG Revelations

[bwexler]

I had my split night PSG in Oct 2011. I came across it while looking for something else.

I now understand it for the first time. I had ZERO Apnea Events. I had 117 Hypopnea events in 83.5 minutes of actual sleep.
My Oxygen desat Nadir was 75%.

The conclusion on the summary page severe obstructive sleep apnea. AHI 84

I never realized that 100% of my events were hypopnea. I have read it many times. How can someone who KNOWS so much, Know so LITTLE?

[chunkyfrog]

We learn new things every day. We stick with therapy because that gives us more days.

[OSAHell]

Hi bwexler,

I noticed that you are using a ASV...

Where you put directly on ASV after that split night or on CPAP/APAP? I ask because I also had high level of hyponea in my sleep study (between 75-80%) the remaining events where split between OA and CA. Conclusion moderate obstructive sleep apnea and was put on APAP. Long long story short, complet struggle and hell with high AHI swing for 9 months (between 2 and 42, last 2 month AHI average was just a bit over 15). That was until I put my hand on a ASV. Higher AHI on ASV was 3.4 with few 2s and average between 0.5 and 1.7 depending on setting (over a 6 month period)!

[bwexler]

No. I successfully used a Resmed S9 Autoset for over 2 years with AHI below 3.
Then things started to get flaky and as I reached the 3 year point I saw a Sleep doc who sent me for an ASV Titration. The sleep slab had screwed up and scheduled me for a regular PSG at their lab closer to my house. When they called to offer me a cancellation spot at their other location, I verified that I needed the ASV titration and that is when they told me they weren't even equipped at the original lab to do ASV.
In Oct I will be 2 years on ASV and 5 years total on PAP therapy. I thought I had all this down but never noticed that 100% of my PSG events were Hypopnea. If I had known then what I know today I might have started on ASV.

I also use 3 litters of O2 at night with my ASV to keep my saturation around 92-93. Daytime seems to be fine without supplemental O2.

[OSAHell]

Thanks for the answers and great to see that you found the right therapy. For me, let's just say that I pretty much lost all confidence in health professionals... Things would have been realy different for me if I knew then what I know now!

[bwexler]

Thanks for the answers and great to see that you found the right therapy. For me, let's just say that I pretty much lost all confidence in health professionals... Things would have been realy different for me if I knew then what I know now!

Isn't that why we are all here.
I believe the collective knowledge here exceeds the knowledge of most individual sleep specialists.

[OSAHell]

Isn't that why we are all here.
I believe the collective knowledge here exceeds the knowledge of most individual sleep specialists.

Yes, and thanks God for those sleep apnea forums, Sleepyhead and all of those who contribute! I also think that "the collective knowledge here exceeds the knowledge of most individual sleep specialists" and it could be applied to many field of work. But I guess I was expecting a minimum of knowledge from the sleep specialists...

It took me less than a week after I start reading on sleep apnea and installed Sleephead to have a pretty good idea of what I had. Before that, the only thing I knew about sleep apnea was the symptoms and that a good treatment should be an average AHI under 5...

My first APAP (F&P) didn't differentiate OA and CA so the obvious wasn't so obvious...
First thing I noticed was my breathing in my flow rate that was looking strangely like CSR. Going from about a hour up to more than half my sleep (7-8hrs sleep) and most of my events where in that CSR pattern. So I called the see my sleep tech which was a sweet girl but...

About a week later I went to meet her and I explained my findings and showed her some Sleepyhead screenshots of my breathing pattern...
First thing she asks me was: "How did you manage to get those data?"
Me: "Bla bla bla Sleepyhead bla bla bla... And what about my findings?"
Her: "Well CSR is a really special kind of breathing that we see when people are dying so you can't have that!"
Me: "Ok, obviously I'm not dying but how do you explained my pattern?"
Her: "heu.... (long pause) must be your software..."
Me: "Ok maybe... can we look at my flow rate on your software then?"
Her: "heu... (very long pause)... hum... (pause) heu... (pause) I don't think I can do that (zoom in the flow rate) on my soft...
Me: "Can we take a look to see if you can?"
Her: "hum… sure why not!"
30 sec later and with my help...
Her: "Ha, look at this, I can do that!"
Me: "Cool, so does the flow rate look the same?"
Her: "Well it's look pretty close but as I said before, CSR is a really special kind of breathing that we see when people are dying so you can't have that"
Me: "So how would you call what you see then? Is it normal? Don't you think it could help explain why my AHI are so bad and that I feel even worst than before APAP?"
Her: "I don't know how to call it but I don't think it's related to your problem..."
Me: "Ok, but can you show this to my sleep doc and see what he think?"
Her: "Sure, no problem!"
Me: "Thanks" and I left.

Honestly at that point in time I wasn't so sure anymore what to think. And I had a lot of fatigue, brain fog, memory and concentration problems which didn't help. So I went back on the net trying to make sense of all this. After a week of search and more details data from my APAP it became obvious to me that this was something to investigate and I became more aware of CompSA... (I mentioned CompSA to my sleep tech in this met but she said that they would know if had it!) Anyway, I called them to met again with my sleep tech and made sure that the sleep doc will be in the office at the time of my next meeting.

About a week later I went and met with my sleep tech and show her more data and some studies I found on the net and she basically repeated what she was saying the last time... But this time, I asked and insisted to speak directly to my sleep doc! She got out and came back a few minutes later. "Ok, he'll meet you but it will cost you 100$, clinic policy." I wasn't surprise and I said "Ok, go!".

Some welcome chatting and then,
Me: "So, did the sleep tech told you about my finding and the CSR in particular?"
Him: "Yes it's but it's nothing to worry about."
Me: "Hum... are you sure? Why?"
Him: "Yes, bla bla bla CSR bla bla bla buzzwordss bla bla bla acronymss bla bla bla dying bla bla bla."
He completely lost me there but from what I understood he was basically saying the same thing the sleep tech told me in a much more complicated way!
Me: "Ok, but my understanding is that CSR could also be cause by heart problem any thought on that?"
Him: "Well do you had or have any heart problem or symptoms of heart problem?"
Me: "Not that I know of... except maybe the CSR..."
Him: "If you had heart problem you would probably know."
Me: "hum... (long pause) how would I know that?"
Him: "Well you would have some symptoms..."
My first thought was for the 100$ I gave him... I chose to changed the subject and go to my next point!
Me: "Ok, but maybe it's related to CompSA, do you think I could have CompSA since my therapy isn't going well at all and that my last AHI average over 5 weeks (with perfect compliance) is nearly the same as my diagnosed AHI?"
Him: "No, bla bla bla"
Me: "Are you sure, how can you be so sure?"
Him: "Yes, I'm looking at you sleep study right now and there is absolutely no mixed apnea so no, you don't have CompSA"
Me: "What?"
Him: "There is no mixed apnea in your sleep study so you can't have CompSA"
After more chatting with him I started to get doubts about my understanding of CompSA and I had completely forgot about the CSR thing. But not about the 100$! :/

After few more meeting with them it was clear they had no idea what CompSA was and wont look more into it. In the mean time, I found an other sleep clinic and finally quit this one. The new sleep tech (#2) told me to get my full sleep study report not the one I sent him before we met. I didn't thought that there was an other report beside the one I had since the beginning... There were lot of infos on it (1 page) but not detailed and in particular on the event's type, the report said "All events are obstructives and no (zero) central apnea". It was written by my sleep doc.

I called sleep tech #1 and ask if I can go get a copy of the full report. Few days later went to get it and when I came back home I sat and start reading the 6 pages report...
First page: basically the same infos that was on my 1 page report but without the bla bla...
Second page: Sleep night graphs
Third page: The interesting part was the breakdown between hypopnea/apnea, nearly 80% hypopnea and the remaining events split between central and obstructive apnea... AND at the end of this page there is a section for CSR specifically (not periodic breathing)... Guess what... nearly 20% CSR during the night! I think I froze for an hour on that page before being able to do anything else.

This is just a tiny bit of my whole health care experience in the 2 years and a half so far and I must admit that I really don’t know where I would be right now if it wasn’t for my sleep tech #2. I still have some trouble because he’s not a Dr and is limited to what he can do but I’m beginning to see a light at end of all this…

Well, sorry for the long post but I guess it has to come out at some point!

[VTair]

I am currently on Auto Bi-Pap with PS of 4 Max IPAP 16. The machine is generally running with a high of about 12. I am experiencing numerous (in the hundreds) of Cheyne Stokes breathing episodes that did not appear in my sleep study. My sleep study did show almost entirely Hypopneas giving an AHI of 44. No Centrals or Cheyne Stokes breathing. I believe that my Sleep study Hypos were actually Periodic breathing. My machine has converted the Hypos to Cheyne Stokes breathing through the mechanism of CO2 washout. I am going to be working with the DR and Techs to resolve the issue. My concern is that I don't want to fix what wasn't broken in the first place. In other words I think that I need to be treating the Hypos as Periodic Breathing episodes. So far XPAP has only made things worse. I have read that Theophylline has been used to control Periodic Breathing.

[OSAHell]

Hi VTair,

I'm not sure if your message was for me or if there was an actual question in it but since I was the only one talking about Cheyne-Stokes breathing...

I would be glad to look at it with you or comment if that's what your looking for but first:
-Fill in your equipments profile
-You should start a new thread with something like "Cheyne-Stokes respiration CSR" in the title and put basicly the same text you wrote here. And ask what you're actualy looking for.
-Start to look for Sleepyhead software if not already using it
-Look on how to post image on this site

This is to not highjack bwexler's thread. My "little" post might be confusing but it was actually about "My PSG Revelation" story with a bit of overhead...

EDIT: Actualy just reread some post here... I forgot my little "chatting" with bwexler about hypopneas... Maybe that was your point? Either way my offer still stand!