How to treat this? Sleep Study + 2 weeks therapy

Hi Everyone,

Here is some data from my sleep study:


So here's the problem. 45.8% of my apneas were centrals. My hypopneas were not trivial - the longest was over a minute - a long time to leave the heart and brain with too little oxygen. Speaking of oxygen, with 201 desaturation events, and 31.5 minutes below 90%, I'm starving my brain/heart body systems of what they need to function.

My sleep Dr put me on a BiPAP Auto SV (servo ventilator) due to my centrals. He did not titrate me, as the manufacturer recommends. Maybe he has enough clinical experience to set my prescription without titration He has told me he doesn't think I need to know my data, he is "afraid I would obsess on a number," because I don't have the clinical judgement to evaluate it. Since I've been evaluating my diabetes numbers for 10 years, blood pressure for about 5, and taking my own graphs, moving averages, and trends to my PCP Dr. when I have an appointment, I find the sleep Dr's attitude medieval, demeaning, obstructing my path to better therapy, etc. etc. Enough about this aspect of the mess. From my health plan's point of view, he's the only sleep Dr available to me - I'll either win him over or find some other way to get the help I need. I've gotten a lot help from this forum, more than the sleep department has offered to date. Many, many thanks

I've had two weeks on the machine that breathes for me when my brain forgets to take care of it. I've summarized some of the numerical data on a spreadsheet.

Here is 14 days of therapy:



I previously posted detail for one night, 8-19. Now, you can look across two weeks of data, summarized on the spreadsheet, and let me know which dates you would like to see in more detail. Please let me know what looks worth further investigation, and I'll do the copies of the Encore Pro detail pages and the posting. There may be some delays - I only get to work on this in fits and starts, or 5 AM - 6:30 AM. And all this is new to me so I'm pretty slow at doing the computer stuff.

Clearly, I've had mask issues. But I didn't know it until I got Encore Pro and got my first reports. Thank you SWS . I've changed back from the Opus Pillows to a nasal mask, but I'm having such nose pain I may have to go back to the pillows.

My settings are Max IPAP 20; Min IPAP 5, EPAP 5, Backup Rate Auto. I've never approached my Max IPAP - the highest AVG PEAK was 10.1 on night 2. My Apnea number is way down, and I'm hoping Patient Triggered Breaths at about 97% means I'm having few centrals. Periodic Breathing has itself waxed and waned over this two-week time frame. I'm not sure at all what that means.

Kira has suggested setting Min IPAP closer to my Average IPAP. SWS has consistently suggested that I find a more cooperative, patient-oriented sleep Dr. (plus many other helpful suggestions) I'm keeping all recommendations and will follow up with the board, reporting what happens.

Who else can add to the mix?

Thanking you in advance,
Mr Capers

Mr Capers wrote:because I don't have the clinical judgement to evaluate it.

To me that is that a veiled way of calling you stupid? I get so angry when I here experiences like that.

With help, this is not hard stuff to figure out. Why do they assume the the whole population are idiots?

Good luck with your therapy.

Mr Capers wrote

Clearly, I've had mask issues. But I didn't know it until I got Encore Pro and got my first reports. Thank you SWS . I've changed back from the Opus Pillows to a nasal mask, but I'm having such nose pain I may have to go back to the pillows.

If you go back to the nasal pillows, expect continued leaks and less than optimum therapy. My HMO gave me a nasal pillows mask (their cheapest) with a loaner AutoCPAP in March (for a home titration). I used the nasal pillows mask for two weeks and experienced leaks up, down, left, right, etc. I next used a Nasal mask with mouth taping. The nasal mask didn't leak much but the bridge of my nose couldn't stand the pain. One month after starting CPAP, I switched to a F&P Flexifit 431 Full Face mask. I have used it every night since with good results. It is comfortable (no pain), 0 or small leaks which I can control, and stays in place for side sleeping. If pillows continue to leak for you, and nasal masks are painful, try a Full Face mask. A FF mask may work wonders for you as it did for me.

Treehorn wrote

With help, this is not hard stuff to figure out. Why do they assume the the whole population are idiots?

Because it keeps them in Power, in Control, in Money, and pleases their humongous Ego. Early on, as a Newbie, after finding and reading through this forum, I attended a Sleep Clinic meeting for new CPAP users. I heard a user tell the Sleep Dr. that he was wearing the provided chin strap with his nasal pillows mask (same one they had given me and everyone else who was starting out) but was still feeling like crap in the morning. He thought it was because of his opening his mouth during the night (his wife had told him that he was waking her up with all the whooshing air noise escaping from his mouth). The Dr. told him "you are opening your mouth to breathe in more air because your pressure is set too low and that he would have his assistant raise the machine's pressure". The man said his pressure was set to 10 or 12, I don't remember which. With this kind of response to "mouth breathing", it was already clear to me, a new but educated user, who was the Idiot in this conversation and it definitely wasn't the man who asked the question.

Later on, I heard one of the "old timers", by lieu of attending prior meetings, tell the man that the Drs assistant, a RT, would work her "magic" and raise the pressure on his machine. Sure enough, she took his machine to a corner of the room and worked her "magic", returning the machine to him within a minute. I stayed for the entire meeting and watched her perform her "magic" over and over again as "raising the pressure" was the cure-all for any sleep therapy problem raised by the new users. As I walked to the parking lot afterwards, I was sick to my stomach. I have not attended any other meetings. When I do go back, I will take the CPAPTalk brochure to hand out afterwards to the attendees. I have informed my PCP about my experiences (he is the one that told me about the user meeting) and given him a brochure.

You might want to consider a hybrid mask. The nasal pillows are a bit different on this mask from what I have seen on others. I get a very effective seal on this mask, especially at the pressure range you seem to indicate on your graphs. Most of the leaks are on the main seal, and not the nasal pillows. It is also a very comfortable mask, and simple to care for.

<bumpety bump>


Mr Capers, wonder how well you would sleep if you avoided the supine position:

search.php?keywords=positional+apnea+fa ... mit=Search


viewtopic/t44614/search.php?keywords=tennis+ball+pocket

Hi SWS, timbalionguy, treehorn, cinco777, and I hope I didn't miss anyone,

I appreciate all the mask suggestions. I started by using the two nasal masks, changed to the nasal pillows with cheers of joy, got the software, found out about my leaks, changed back to nasal masks. My nose is so sore, I've had to switch back to the pillows - with leaks. Maybe I can try a nasal again tonight. Calls to the DME have not gotten me a call back.

The serial continues: the nose is strapped to the railroad tracks, the mask is getting closer, the soundtrack is those roaring breathing sounds a la Darth Vader. Will the nose toughen up enough to survive the encounter with the mask? Will he get a new mask? Will he epoxy nasal pillows in his nares? Will there be a full-face hybrid mask in the future. I'll keep you posted.

SWS, the answer is yes.

Mr Capers, wonder how well you would sleep if you avoided the supine position:

I noticed the correlation between A+H and supine position on the sleep study. I've been retraining my sleeping habits ever since. Side is about the only way I'm good, more damp pillow than before, but almost anything to get those pesky As and Hs down.

Treehorn, about being treated like an idiot, yes, I'm at a slow boil on the anger meter. This sleep Dr is the only one in network in my town, i.e., the only one my HMO is willing to pay for. My strategy is to win him over by guile and deceit rather than make an all-time enemy within the system. The next facility likely to have a sleep Dr is maybe a 60 mile round trip. IMHO, these large, bureaucratic organizations are difficult to move with straight-ahead attack, but can undermined succesfully . I have the t-shirt from other such encounters.

SWS, this doesn't mean I'm ignoring your good advice, just want to play the hand I'm dealt before moving on.

SWS, to revert to a previous topic, you cited a Respironics definition of periodic breathing from their FAQ:

Periodic breathing is defined as alternating periods of hyperventilation with waxing/waning tidal volume and periods of central hypopneas or apneas. There are many forms of periodic breathing, one of which is Cheyne-Stokes Respiration (CSR). CSR is characterized by a cyclic pattern of waxing and waning during periods of apnea, and deep, rapid breathing.
http://bipapautosv.respironics.com/

This morning I found this in the Respironics Glossary:

Periodic Breathing Three or more apneic pauses of 3 or more seconds (but less than 20 seconds) in duration within periods of normal respiration of 20 seconds or less

The latter is the more easily quantifiable definition and it would be my guess is the one used in their algorithm. It is interesting that they seem to count "apneic pauses" as short as three seconds. Your take on this: the two definitions, plus most anything else you care to comment on would be enlightening. Are there any days of detail data you would like to see posted? My periodic breathing of 7% was at its peak on my previous post - that was what I meant by my comment that the post was on the outer edges of the distribution.

I'm curious about the Patient triggered breaths. Seems to me here that a higher number is a better number, and if I hit 99%, I'm almost central apnea free. Is this crude interpretation anywhere close to the mark?

To all who have answered so far, many thanks, and bumps to you,
Mr Capers

Mr Capers wrote:This morning I found this in the Respironics Glossary:

Periodic Breathing Three or more apneic pauses of 3 or more seconds (but less than 20 seconds) in duration within periods of normal respiration of 20 seconds or less

The latter is the more easily quantifiable definition and it would be my guess is the one used in their algorithm. It is interesting that they seem to count "apneic pauses" as short as three seconds.

That's only if you be a "neonate".

Ms. Muffy

Hi Ms. Muffy,

What's a neonate I'm just a babe in the woods with all this stuff, probably should have found out by now

Happy Naps,
Mr Capers

Mr Capers wrote:What's a neonate

A baby. That PB criteria is for infants, from NIH:

http://consensus.nih.gov/1986/1986Infan ... 58html.htm

Ms. Muffy

Muffy is neither neophyte nor neonate, Mr Capers...

...Manages a sleep center. Them be good brains to pick regarding anything sleep related.

Only a NY muffin

Thanks, I'm a baby at all of this, and I've not seen many other places where acronyms so befuddle the neonate. Esp, consider, if short-term memory declines with OSA/CompSA, it is hard to remember all this stuff

Happy Naps, too,
Mr Capers

SWS,
I actually treasure all replies. It takes awhile to have the BS detector kick in - you have to have a certain amount of solid knowledge - and I have very little to this point.

Thanks to you, SWS, and Muffy, and so many others. Especial thanks to rested gal and pugsy who are in my goodwill will. This is a wonderful place for a neonate, it is warm, welcoming, smart, opinionated, vital, patient with us neonates . . . Many of us are questing, some of you are acting as mentors, masters, leaders.

I'm grateful for all of you. Some, I copy excerpts to permanent documents to read later, others, I thank and move on. I'm still so glad I found this place. Can one be kicked out? I hope not

Happy Naps, and I record what I don't think I can remember,
Mr Capers (Neonate, officially christened by Mugsy )

Thanks for the complement, Mr. Capers.

Muffy really does manage a sleep center and is one smart sleep pro IMHO. So that's a very good person to pay close attention to. Great sense of humor too!

BTW, your sleep-study data set shows more data channels having been collected than just an "auto CPAP". So that's a good thing...

Mr Capers wrote:I'm curious about the Patient triggered breaths. Seems to me here that a higher number is a better number, and if I hit 99%, I'm almost central apnea free. Is this crude interpretation anywhere close to the mark?

I think your interpretation is basically correct, Mr Capers.

But the patient triggered breaths should not be allowed to increase at the expense of allowing AHI to creep up to unacceptable numbers. There can be a fine line between an acceptable number of belated or latent breaths versus unacceptable numbers of frank apneas. As a general example: numerically decreasing backup rate can sometimes yield a higher percentage of patient triggered breaths, but at the expense of unacceptable numbers of apneas. You want the machine kick-starting your breaths when your own respiratory drive will not. That's part of what the machine is supposed to do for you.

So when the machine is configured correctly, a portion of those machine-triggered breaths would ideally be prevented apneas---as a matter of machine design. Another portion will simply be belated or latent breaths that were hastened according to that backup rate. However, yet another small or ideally nonexistent portion may be apneas that did not respond successfully to the machine's backup rate.