My Doc Says: "Ignore the Numbers."

[6PtStar]

The numbers out of my machine may not be accurate but after a few months and I got caught up on my backlog of sleep I can almost tell you where my numbers are going to be because of the way I feel. If they are under 2 I wake feeling good. If they approch that 5 mark I don't feel as good. My wake up feel sure tells me whether the numbers are accurate and so far (10 months) they have not missed in a long time. Besides it's gonna be a cold day in he** before they get me back in that sleep lab with all the wires glued to me in the confortable bed and then tell me just relax and go to sleep!

Jerry

[mindy]

[quote="ozij]Some doctors and clinics use automatic machines for finding out a recommended pressure - and research has shown that this kind of titration is good e.g Response to a 2 week continuous positive airway pressure trial accurately identified patients with obstructive sleep apnoea syndrome

and : Accuracy of an Unattended Home CPAP Titration in the Treatment of Obstructive Sleep Apnea : ... These results indicate that auto-CPAP therapy represents a new useful and accurate way to identify conventional CPAP setting outside hospital and sleep laboratories.


[/quote]

I just read those papers and, as in all good papers, there is a "limitations" part of the discussion. Here's one from one of the above papers:

"However, it is particularly important to be aware that the algorithm of Peff determination that we have validated cannot be applied to other auto- CPAP devices that have different pressure limits and pressure responses criteria that should obviously modify the relationship that is used to determine Peff. Another important clinical issue arising from our results is that auto-CPAP titration at home must be accompanied by a strict follow-up of these patients. patients. In those whose clinical response is not optimal, a control polysomnographic study with the determined pressure setting should be done to distinguish between inadequate pressure setting and other causes of persisting hypersomnolence (periodic leg movements, idiopathic). "

I do believe that home evaluation would be a good solution but one study is never considered reliable for practice implementation. It takes a number of studies with evidence building. Lack of doing that has led to many nasty results.

Mindy

[Snoredog]

[quote="Anonymous"]Went to a sleep specialist at Kaiser. My concern was that my AHI scores were consistently higher than my original sleep study. I brought two weeks worth of data downloads with me to discuss. He wouldn't even look at them and told me that the numbers from my APAP were basically worthless.

This goes against everything I have read on these boards, but he claims to be a sleep apnea expert. I'm so confused!

[j.a.taylor]

I could say I'm a "sleep expert", too......been sleeping most every night for the last 59 1/2 years....

Your doc's right, and at the same time sadly mistaken.

A sleep study, with all the attachments and "specialized" tools monitoring your sleep patterns is probably provides more accurate numbers for the time and location.

However, you're trying to sleep in an artificial environment, and not following your regular pattern of sleeping, so that leaves room for a small percentage of error + or -. Even if that is accounted for in the study, we can't do a sleep study every night.

For me, I don't want to be shooting blindly in the dark night by night. I don't want to depend totally on my subjective feelings about how I'm sleeping (I already know that those can be wrong sometimes), and I don't want my doctor adjusting my treatment based on my (or his) subjectivity. I want measurements of change.

I'd rather be my own sleep expert (as Den so brilliantly says above), and have some data--even if it is slightly inaccurate--rather than no data.

I'd rather team with my doctor on my treatment, or if I have a doctor who isn't willing to work with me (fortunately mine does) find another doctor or launch out on my own (which is sad, and should be addressed by our medical professionals), until I find a "sleep expert" or primary care physician who truly lives up to the demands and responsibilities of their profession.

I think it's highly important to have qualified and responsible medical professionals partnering with us on our treatment planning, but if we have doctors unwilling to fulfill their responsibility (or because of the demands of some insurance companies, unable to fulfill them), then we need to take responsibility for our own health.

Even if that causes us to be viewed as renegades.

[ozij]

Some doctors and clinics use automatic machines for finding out a recommended pressure - and research has shown that this kind of titration is good e.g Response to a 2 week continuous positive airway pressure trial accurately identified patients with obstructive sleep apnoea syndrome

and : Accuracy of an Unattended Home CPAP Titration in the Treatment of Obstructive Sleep Apnea : ... These results indicate that auto-CPAP therapy represents a new useful and accurate way to identify conventional CPAP setting outside hospital and sleep laboratories.

I just read those papers and, as in all good papers, there is a "limitations" part of the discussion. Here's one from one of the above papers:

"However, it is particularly important to be aware that the algorithm of Peff determination that we have validated cannot be applied to other auto- CPAP devices that have different pressure limits and pressure responses criteria that should obviously modify the relationship that is used to determine Peff. Another important clinical issue arising from our results is that auto-CPAP titration at home must be accompanied by a strict follow-up of these patients. patients. In those whose clinical response is not optimal, a control polysomnographic study with the determined pressure setting should be done to distinguish between inadequate pressure setting and other causes of persisting hypersomnolence (periodic leg movements, idiopathic). "

I do believe that home evaluation would be a good solution but one study is never considered reliable for practice implementation. It takes a number of studies with evidence building. Lack of doing that has led to many nasty results.

Mindy

[j.a.taylor]

Basically it means your doctor is FOS.

I'd get the Encore Software and say screw the doctor and use the copay saved to go out to dinner.

I think Snoredog summed it up well. Your doctor isn't really being a doctor.

In fact, if he's unwilling to look at hard data, you might be better off finding yourself a local witch doctor.

At least, they might drug you into a deep sleep. (Oh, wait, some doctors are doing that already--I guess some witch doctors today wear lab coats).

(Yes, I like doctors, this is not an attack against medical professionals per se, but against those doctors who refuse to responsibly practice their profession).

[j.a.taylor]

Sorry, I just had to add one more thought on this topic.

Your doc says, "Ignore the numbers."

Your gut says, "Ignore the doc."

[kteague]

My current doctor wanted me to switch from autopap to straight cpap in hopes that doing away with pressure changes would help my frequent awakenings. As far as data goes, she has mentioned the data on a machine being one channel as opposed to a sleep study, but she didn't discount the machines altogether. She did acknowledge that my pressure needs in my ResMed Autoset Spirit reports were in line with my titrated pressure. I'm sure that was more than just luck.

Funny that a prior study at another lab titrated me at 2 pressure points less, and I had nothing but trouble. What a difference a couple points can make. But the autopap pinpointed the problem, and it was confirmed by the next sleep study. Good enough for me.

Kathy

[Restless1]

MF Fitzpatrick, et al published an article in 2003 in Respiratory and Critical Care Medicine in which they stated:

"Self-adjustment of CPAP at home will provide equal or superior efficacy in the treatment of obstructive sleep apnea (OSA) as compared with in-laboratory titration."

They stressed education of the patient was important. It's too bad some of us have to turn to this forum to be educated.

Irene

[Slinky]

It seems like all of this research and especially clinical trials for OSA therapy rely on ensuring the patient is properly educated AND that they receive the support and assistance that local DMEs SUPPOSEDLY provide.

Yoo Hoo!!! Like these clinical trials are run in an ideal environment, they aren't REAL LIFE situations!

[Weezer]

Well, I think I'm stuck with my doctor, so the question remains: where do I go from here?

I've requested my sleep study from Kaiser. So far I'm waiting to receive an authorization form from the medical records department – and then I have to wait another two weeks for them to pull it up and send it. How's that for red tape?

I have my Autoset Vantage on a rent-to-own basis. It's $180/month, $900 to buy it outright. Kaiser gave me an M-Series Plus, which makes a very loud whirring sound, isn't data capable, and of course, has no auto adjust feature.

So far, I consistently get a leak rate of zero with no chin strap or mouth taping. The Swift mask is pretty comfortable. What bugs me is the loud whistling sound the Vantage makes, which makes it hard to sleep and wakes me up.

I took it back to the DME, which replaced it, but this one sounds exactly the same. The tech said, "That's how it sounds." Now I have to decide whether to shell out nine hundred bucks for the darn thing. The Respironics Auto "tank" is unavailable at every DME I called – replaced by the M Series. I could purchase one online, but I've already sunk money into the ResMed and don't want to buy without trying it.

The S8II might be quieter, but isn't available in the States yet – and who knows when it will be?

For me, the bottom line is compliance. On that, I agree with my doctor. Using the thing all night, every night is more important than constantly tweaking the numbers. Unfortunately, that's easier said than done.

Here's the thing. I was diagnosed with an AHI of 10.2, 11.8 on my back. My AI is consistently under 5, but my HI goes up to 10 and higher – both on straight CPAP set to my titrated pressure of 11 and APAP set to 7-15.

Without my original sleep study, I have nothing to compare it to – but I don't feel like therapy is working for me and the numbers say it's not working for me, so who do I listen to: my doctor or common sense?

[Guest]

Hi Weezer,

I don't envy the spot you're in! I'd vote for common sense ..... but that's just me. It's *your* therapy!

Mindy

[Slinky]

I've not found my Vantage to be loud. Must be I'm just not as sensitive to noise at sleep time as you are or you are more sensitive to noise at bedtime than I am.

Have you tried putting a large mouse pad, or, if you remember the days of typewriters, a typewriter pad under your Vantage? They absorb quite a bit of sound.

Have you tried putting the Vantage on a bottom shelf of your nightstand? Or on the floor on a flat, not plush, rug? Or in a drawer on a towel if your nightstand has a drawer? You could close the drawer allowing it open just enough for your hose.

I had a "classic" Remstar Auto w/C-Flex and got very good therapy w/it - but I preferred my Resmed S8 Elite for the data so easily accessiable via the LED screen; so when a complete AutoSet Vantage w/only 505 hours on it became available I GRABBED it! My son in law uses the Remstar now when he travels out of town (he does so a lot).

[j.a.taylor]

Well, I think I'm stuck with my doctor, so the question remains: where do I go from here?

Without my original sleep study, I have nothing to compare it to – but I don't feel like therapy is working for me and the numbers say it's not working for me, so who do I listen to: my doctor or common sense?

You do the best you can with the options you have. Work to educate yourself, and work to get your doctor to listen to you, because he/she realizes that you're knowledgeable about apnea.

My primary care doctor, who I'm very happy with, didn't really like the idea of me monitoring my therapy (he said some people get too obsessed with that). However, he is willing to listen, and he is very thoughtful.

When I told him I didn't think the pressure setting on my straight CPAP was working for me, and when I told him I thought monitoring my therapy with some data was equivalent to my wife (who he also treats) monitoring her diabetes; he readily wrote me out a prescription for an AutoPAP that was data capable.

If this straightforward approach doesn't work, work the system until you find somebody who will listen to you. Even though we sometimes label the Insurance Companies, DMEs, Docs, etc as part of the "Evil Empire" there are usually good, connected people in the system. Don't take no for an answer.

Sometimes its just a matter of wading through the corporate pollution until you find the right person who is willing to listen to you, and who also has the power to provide the help you need.

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): CPAP, Power, Prescription

[Slinky]

"Corporate pollution"!!! I couldn't have said it better myself, JATaylor. BRILLIANT phrasing!

I just put several cement blocks around your soap box to steady it for you.