In trouble at Sleep Doc

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
lytepole
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In trouble at Sleep Doc

Post by lytepole » Wed Oct 29, 2014 1:22 pm

Well, went to first appt with sleep doc (one month on CPAP) and got in trouble for changing my settings. "This is FDA controlled! That is no different than changing a prescription I wrote to you between here and the pharmacy" (please note, I'm also not opposed to changing my medicine dosage at home if I know its safe) Doc was also upset that the DME turned on EPR for me because that wasn't prescribed.

Ugh.. I switched from straight CPAP at 12 to Auto from 10 to 12. But, I did leave with an updated prescription of 10-12.

Other words of wisdom from doc that I need to research:

1. The S9 Autoset has a horrible humidifier that only gives about 70% on auto and takes a long time to ramp up.
2. The F&P Icon Auto has a much better humidifer than the Resmed S9 Autoset - delivers more relative humidity and gets to the humidity level more quickly.
3. Using auto puts my cardiovascular health at more risk instead of having it at a straight pressure
4. The new Resmed Airsense has a better humidifier than the S9 Autoset
5. The auto mode on the F&P Icon Auto is better than the Resmed S9 Autoset


Note: The doctor is currently doing some kind of study with F&P to help improve the tracking software......

Where can I look for more information on this, especially #3? I obviously am going through treatment as I want to optimize my health, so I want to be as informed as possible.

Thoughts?

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Wulfman...
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Re: In trouble at Sleep Doc

Post by Wulfman... » Wed Oct 29, 2014 1:31 pm

lytepole wrote:Well, went to first appt with sleep doc (one month on CPAP) and got in trouble for changing my settings. "This is FDA controlled! That is no different than changing a prescription I wrote to you between here and the pharmacy" (please note, I'm also not opposed to changing my medicine dosage at home if I know its safe) Doc was also upset that the DME turned on EPR for me because that wasn't prescribed.

Ugh.. I switched from straight CPAP at 12 to Auto from 10 to 12. But, I did leave with an updated prescription of 10-12.

Other words of wisdom from doc that I need to research:

1. The S9 Autoset has a horrible humidifier that only gives about 70% on auto and takes a long time to ramp up.
2. The F&P Icon Auto has a much better humidifer than the Resmed S9 Autoset - delivers more relative humidity and gets to the humidity level more quickly.
3. Using auto puts my cardiovascular health at more risk instead of having it at a straight pressure
4. The new Resmed Airsense has a better humidifier than the S9 Autoset
5. The auto mode on the F&P Icon Auto is better than the Resmed S9 Autoset


Note: The doctor is currently doing some kind of study with F&P to help improve the tracking software......

Where can I look for more information on this, especially #3? I obviously am going through treatment as I want to optimize my health, so I want to be as informed as possible.

Thoughts?
Do you have a history of cardiovascular "issues"?
In my opinion this doctor is an IDIOT!!!
Lots of sleep doctors prescribe Autos in ranges of pressures. (I personally do better with straight pressure but have at least tried some ranges)
From what I've seen on the forum, lots of people with Afib and other issues use ranges of pressures and ASV machines, too.

The doctor works for YOU. He is like a hired consultant. You do not have to accept his advice as "gospel".

I could go on and on but you get the idea. I'm sure others will be glad to jump in with their opinions, too.


Den

.
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palerider
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Re: In trouble at Sleep Doc

Post by palerider » Wed Oct 29, 2014 1:50 pm

time to find a less stupid doctor, imho.

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Wulfman...
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Re: In trouble at Sleep Doc

Post by Wulfman... » Wed Oct 29, 2014 1:51 pm

I have another idea. Ask the doctor to PROVE the points he's trying to make. Make him show you the medical information regarding his arguments.

As far as the FDA is concerned, the DMEs have to have an "order" (or prescription, if you will) to set or change pressures on the machines, but YOU don't have to abide by them. There are no LAWS that apply to YOU changing your own pressure settings. It's just like taking a medication (to use his example)......you don't HAVE to take a full dosage of something (or take it at all) if you don't want to. People with Diabetes change their insulin dosages all the time.......sometimes with Dr. approval or sometimes with sufficient "education" on how to do it with various charts to go by. Overdosing on insulin could be far more deadly than a few centimeters (more or less) of air pressure from a CPAP machine.

I wish you luck with this guy. He sounds like an egotistical jackass to me.


Den

.
(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
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Pugsy
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Re: In trouble at Sleep Doc

Post by Pugsy » Wed Oct 29, 2014 1:53 pm

The S9 humidifier on "automatic" delivers 80% humidity...it's in all their literature and I bet they have documented proof to back it up.

Sounds like your doc has a serious "god complex" going on and is pushing F & P because he has a stake in them.

Regarding the question number 3..never heard of that at all...and if it were true do you think that so many places are going to just dispensing APAPs and doing the titration at home? Kaiser does it for everyone and no one gets an in lab titration unless problems arise.

I agree with Den...sounds like a jackass to me too. I know what I would do but I am not you....so you have to make that decision.

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Nozzelnut
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Re: In trouble at Sleep Doc

Post by Nozzelnut » Wed Oct 29, 2014 2:04 pm

You can preheat the S9's water if needed. Sometimes too much humidity can cause issues too. The auto mode of one machine may treat you better than the auto mode of another machine; due to their proprietary software. But I doubt you could draw any conclusions in a couple days of treatment using one or the other.

Like the others have said; he's pushing the F&P pretty hard because he's got some involvement with them. Not that the Icon is a bad machine; I've never used one.

Changing settings; I waited until the 30 day compliance period was over so I didn't have to deal with the questions...

I'd imagine that using any XPAP will reduce your risk of cardiac issues as opposed to not using any treatment for OSA.

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Janknitz
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Re: In trouble at Sleep Doc

Post by Janknitz » Wed Oct 29, 2014 2:07 pm

Well, on the bright side, at least your doctor actually LOOKED at your settings and cared what they were. But what I didn't hear in what you said: How is the change in pressure WORKING FOR YOU? Not for him, but for you? Is it treating your apneas optimally? Are you comfortable and able to sleep well with the settings? That's what matters, in the long run. You're the one who has to sleep with this every night, not him.

Rest assured no CPAP police are going to be knocking on your door. You have a controlling doctor who wants to write you out of the treatment equation. You have to be the good little patient and do what he says, whether it's the best thing in your interest or not. He doesn't trust your intelligence or feelings--he doesn't even want you to use features that can make the treatment more comfortable. And he has a vested interest in the Fisher and Paykel company, regardless of whether that works best for YOU. Do you want him dictating your care?

I'd take what he says about F&P being a better machine with a grain of salt. What works for you is what's best for you, and if your current machine is doing what you need it to do, then don't worry about it.

As far as APAP causing cardiovascular risk, unless he can cite valid studies to that effect I wouldn't worry about it. A poorly set range might be a problem for a person with a serious heart condition, but unless that's you, don't worry about it.

I did a quick google search and came up with the following:

http://eurheartj.oxfordjournals.org/con ... Conclusion In patients with CHF and OSA, auto-titrating CPAP improves daytime sleepiness but not other subjective or objective measures of CHF severity. These data suggest that the potential therapeutic benefits of CPAP in CHF are achieved by alleviation of OSA rather than by improvement in cardiac function. [/quote]
(in other words, no harm from an auto=titrating device, but it may help patients with CHF).


http://scholar.google.com/scholar_url?h ... oi=scholar
The findings of our study assessing the effects of
long-term CPAP treatment in OSA patients confirm
what has been described in literature. Indeed, following
CPAP treatment, a reduction in arterial pressure
for both continuous beat-to-beat and 24-h
ambulatory BP monitoring22,23,26 as well as the reduction
in insulin resistance and CRP levels were
reported.10,11 However, somehow surprisingly, we
did not observe a significant reduction in BP and
insulin resistance in the APAP group, while only
CRP was consistently reduced by both treatments.
(in other words, CPAP is better at reducing BP, insulin resistance, and CRP levels than APAP. No reports of "increased cardiovascular risk" from APAP).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3351715/ This study did a comparative analysis between CPAP and APAP and found no adverse effects in choosing one over the other.
"APAP and CPAP were similar in affecting relatively
short-term changes in AHI, quality of life, and most
other sleep study measures in the treatment of patients
with moderate to severe OSA but without significant
comorbidities. APAP, however, did reduce sleepiness by approximately 0.5 ESS points more than fixed CPAP.
Patients who received APAP also had objectively measured
compliance of 11 minutes per night more than
those who received fixed CPAP. We surmise that the
clinical significance of these reported improvements in
ESS and compliance is marginal at best. It is doubtful
that additional short-term trials comparing APAP and
CPAP to examine these measures will substantially alter
these results. However, longer-term and larger trials that
evaluate clinical outcomes, such as cardiovascular
events, and directly estimate differential effects in different
sub-populations may be of value.
Do your own research. I googled "Auto-titrating positive airway pressure and cardiovascular risk".
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wardmiller
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Re: In trouble at Sleep Doc

Post by wardmiller » Wed Oct 29, 2014 2:19 pm

lytepole wrote: 1. The S9 Autoset has a horrible humidifier that only gives about 70% on auto and takes a long time to ramp up.
2. The F&P Icon Auto has a much better humidifer than the Resmed S9 Autoset - delivers more relative humidity and gets to the humidity level more quickly.
. . .
4. The new Resmed Airsense has a better humidifier than the S9 Autoset
. . .
Thoughts?
I know I'm going to step on some toes here, but I think the value of the humidifier is often over rated. The humidity of the air you breath in your bedroom is the same as it was before CPAP. The volume of the air you actually inhale (a lot of the air blown by the CPAP machine never enters your lungs, at least with my FFM) is about the same, before and now. CPAP increases the *pressure*, not the *volume*. So, I believe the humidifier tends to satisfy a psychological need, not a physiological one.

Like you, I would be interested in his explanation of the other claims he stated. Remember, a given doctor is not always infallible with what he says. When I was diagnosed with cancer, I consulted with 4 world-class doctors, including at Johns Hopkins and at Sloan-Kettering Cancer Center, and got five different recommendations of what to do. So if you are not pleased with one, look for another. How you feel about a doctor has a lot to do with how you will feel, period.

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Pugsy
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Re: In trouble at Sleep Doc

Post by Pugsy » Wed Oct 29, 2014 2:31 pm

wardmiller wrote:I know I'm going to step on some toes here, but I think the value of the humidifier is often over rated. The humidity of the air you breath in your bedroom is the same as it was before CPAP. The volume of the air you actually inhale (a lot of the air blown by the CPAP machine never enters your lungs, at least with my FFM) is about the same, before and now. CPAP increases the *pressure*, not the *volume*. So, I believe the humidifier tends to satisfy a psychological need, not a physiological one.
Yep....you sure stepped on my toes.
And then you pretty much told me it was all in my head...that's stepping on all my toes and fingers as well.
I am pretty much speechless from the pain in the toes and that's saying a lot.
Believe what you want to believe...I am not even going to try to explain it to you because I have a feeling it would be falling on deaf ears but you have NFI what you are talking about.
If you don't understand how it all works by now you never will.

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Julie
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Re: In trouble at Sleep Doc

Post by Julie » Wed Oct 29, 2014 2:40 pm

Hi, not sure where you got your info about humidity from, but it's wrong. It may feel subjective to you, but it makes a big difference to very many people who use and need it. You say you're in upstate NY, so I absolutely don't understand your thinking. You must use (very drying) central heating 24/7 for 8 months of the year or have cracked pipes from below zero weather, not to mention freezing yourself, and if not, I'm not sure how you live.

wardmiller
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Re: In trouble at Sleep Doc

Post by wardmiller » Wed Oct 29, 2014 2:54 pm

Pugsy wrote:
I am pretty much speechless from the pain in the toes and that's saying a lot.
Believe what you want to believe...I am not even going to try to explain it to you because I have a feeling it would be falling on deaf ears but you have NFI what you are talking about.
If you don't understand how it all works by now you never will.
Pugsy, my ears are not deaf, nor my eyes blind -- although I can't see out of one of them right now because of this morning's eye surgery. I've learned ever so much here, and I am forever indebted to those of you who take the time to educate those of us who are less knowledgeable.

Rather than denigrating me, I'd appreciate your educating me on this subject. I have two friends who use CPAP without humidifiers, so I'll also pass on any comments for their consideration.

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Pugsy
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Re: In trouble at Sleep Doc

Post by Pugsy » Wed Oct 29, 2014 3:05 pm

Ward...sit in front of a fan....1 to 2 inches from your face...open your mouth...sit there for 7 or 8 hours with the fan blowing in your face and in your open mouth the entire time and tell me your mouth doesn't dry out. Think about it.
I was going to use the going down the road at 60 MPH with your head hanging out the window and mouth wide open for 7 hours but that's a little extreme...a simple fan does the same thing.

If you and your friends mouth and nasal mucosa are fine without added moisture...more power to you but don't tell me that it's all in my head because I know first hand what happens when my nasal mucosa get dried out.
Horrible nasal symptoms that took days to go away and it wasn't just one time...happens every time I let the humidifier run dry because I forgot to fill it.

Google "cpap rhinitis" and do some reading.

You know I don't care if people use a humidifier or not...I really don't...because I do know that individual preferences and needs vary and I am okay with that but don't anyone dare tell me that it is "all in my head" because it isn't and I am not the only person in the world like that...because if I was...you wouldn't have so much to read if you bother to google "cpap rhinitis".

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Julie
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Re: In trouble at Sleep Doc

Post by Julie » Wed Oct 29, 2014 3:09 pm

I'm not Pugsy, but can tell you that if you live near water, or in a place with generally higher humidity than not (or higher than the rest of the country) then you won't need to use the humidifier much, if at all, though I wonder if your friends actually never, ever need to use it (or simply go without and don't realize they could feel better with it on occasion). I'm in the Maritimes, not that far from you, and though I need to use it much less often than many others, there are times I wake up needing not just a little more 'water', but definitely the heater that goes with it... though I can't say which of the two is more important (may not need as much water once I have the heat).

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palerider
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Re: In trouble at Sleep Doc

Post by palerider » Wed Oct 29, 2014 3:30 pm

Pugsy wrote:Ward...sit in front of a fan....1 to 2 inches from your face...open your mouth...sit there for 7 or 8 hours with the fan blowing in your face and in your open mouth the entire time and tell me your mouth doesn't dry out. Think about it.
ward pretty much proved to me in another thread that his clue bucket is pretty empty, and he's quite averse to having it filled back up.

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Re: In trouble at Sleep Doc

Post by Guest » Wed Oct 29, 2014 4:00 pm

lytepole wrote:Well, went to first appt with sleep doc (one month on CPAP) and got in trouble for changing my settings. "This is FDA controlled! That is no different than changing a prescription I wrote to you between here and the pharmacy" (please note, I'm also not opposed to changing my medicine dosage at home if I know its safe) Doc was also upset that the DME turned on EPR for me because that wasn't prescribed.

Ugh.. I switched from straight CPAP at 12 to Auto from 10 to 12. But, I did leave with an updated prescription of 10-12.

Other words of wisdom from doc that I need to research:

1. The S9 Autoset has a horrible humidifier that only gives about 70% on auto and takes a long time to ramp up.
2. The F&P Icon Auto has a much better humidifer than the Resmed S9 Autoset - delivers more relative humidity and gets to the humidity level more quickly.
3. Using auto puts my cardiovascular health at more risk instead of having it at a straight pressure
4. The new Resmed Airsense has a better humidifier than the S9 Autoset
5. The auto mode on the F&P Icon Auto is better than the Resmed S9 Autoset


Note: The doctor is currently doing some kind of study with F&P to help improve the tracking software......

Where can I look for more information on this, especially #3? I obviously am going through treatment as I want to optimize my health, so I want to be as informed as possible.

Thoughts?
Fisher Paykel does make some very good humidifiers and I am sure they make some good machines also. Where they fell down was they are more than a decade late putting the two together into one product but worse than that they aren't big in what we ALL need - that is data - feedback from our machines on how our therapy is doing. The lack of data in FP machines is what has kept me away from them. They do make an excellent stand alone humidifier - HC 150 - ask your doc for one of them

As for humidifiers they are a comfort feature but it is the air pressure which provides the therapy to suppress any breathing events you might have, so I don't understand his comment, the humidifier won't suppress your events any.

I do also use a humidifier and as I understand it esp when you are at a higher pressure the humidity helps. If you or your friends can use a cpap w/o a humidifier great for you & them. I know if I don't have one on at least passover my sinuses close right up. So I won't use a cpap w/o it.

If it were me I wouldn't bother trying to educate this man - he is in it for the money, period. I would be asking people here for docs in your area. I won't see any doc that behaves that way.