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mike291068
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Re: Dealing with angry sleep docs

Post by mike291068 » Tue Oct 29, 2019 12:24 pm

ChicagoGranny wrote:
Tue Oct 29, 2019 11:19 am
mike291068 wrote:
Tue Oct 29, 2019 7:26 am
ChicagoGranny the reason I did not put this in original thread is because it is more or less unrelated.
If you read my post again, you should see that I did not say you should have combined it in your first thread.

I was just pointing out where people could find out what you meant by,
... I "hacked" the whole system ...
It's all good. I have so much info I'm trying to absorb right now I'm a little out of it :D Bear with me. This forum is a goldmine! Peace!

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Cpapian
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Re: Dealing with angry sleep docs

Post by Cpapian » Tue Oct 29, 2019 1:13 pm

I did have an angry response from my sleep doctor when I changed my settings. He told me I could damage my lungs (I forget the name of it) and made me promise to never do that again. At that time, I needed my Rx for my machine. I crossed my fingers and the rest is history.

I only mention it so if you want to be prepared for some potential throwback you have some time to prepare your response.

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ChicagoGranny
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Re: Dealing with angry sleep docs

Post by ChicagoGranny » Tue Oct 29, 2019 1:14 pm

mike291068 wrote:
Tue Oct 29, 2019 12:24 pm
Bear with me.
Bear with ME.
"It's not the number of breaths we take, it's the number of moments that take our breath away."

Cuando cuentes cuentos, cuenta cuántas cuentos cuentas.

Janknitz
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Re: Dealing with angry sleep docs

Post by Janknitz » Tue Oct 29, 2019 2:35 pm

palerider wrote:
Mon Oct 28, 2019 8:05 pm
Dog Slobber wrote:
Mon Oct 28, 2019 7:53 pm
. She did tell me she prefers that I keep the machine in CPAP mode. I shared why I was in APAP mode and then politely, but firmly told her, when my machine was being managed by the Sleep Clinic my AHI was 3.5, since I optimized it myself, it's under 1.
My only guess is that some doctors prefer CPAP mode because they don't understand APAP mode... and how it can benefit many, if not most, people.
I talked to someone who feels that CPAP is preferable because the APAP doesn't respond until you have had at least two events (this probably depends on the machine's algorithm). His theory is that the goal is zero events, so you are better off to have a fixed pressure that prevents ALL potential apneas than an adjusting pressure that needs two events before it will increase pressure to prevent more. I see the point, but I'm not sure that's true for people who have a wide pressure differential in REM sleep. My AHI is so low (0.2 on average) on APAP that it doesn't seem significant.

And then there are the people who are very sensitive to pressure changes and their sleep is disturbed by pressure increases. They may need a fixed pressure just to be able to maintain sleep.

I think it has to be an individual decision based on a person's own response. What I hate to see is doctors who will ONLY prescribe a CPAP so that you don't have the option to test out which is best for YOU, or to do a mini test titration. APAPs can be set with a fixed pressure, CPAP's limit options.
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Janknitz
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Re: Dealing with angry sleep docs

Post by Janknitz » Tue Oct 29, 2019 2:38 pm

Cpapian wrote:
Tue Oct 29, 2019 1:13 pm
I did have an angry response from my sleep doctor when I changed my settings. He told me I could damage my lungs (I forget the name of it) and made me promise to never do that again. At that time, I needed my Rx for my machine. I crossed my fingers and the rest is history.

I only mention it so if you want to be prepared for some potential throwback you have some time to prepare your response.
At the ASAA conference one doctor did talk about the fact that people with congestive heart failure could be harmed by too much pressure and that too much pressure can contribute to CHF in a person who already has risk factors. I never heard that before. That is a fairly common condition.
What you need to know before you meet your DME http://tinyurl.com/2arffqx
Taming the Mirage Quattro http://tinyurl.com/2ft3lh8
Swift FX Fitting Guide http://tinyurl.com/22ur9ts
Don't Pay that Upcharge! http://tinyurl.com/2ck48rm

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Pugsy
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Re: Dealing with angry sleep docs

Post by Pugsy » Tue Oct 29, 2019 2:46 pm

Janknitz wrote:
Tue Oct 29, 2019 2:35 pm
I talked to someone who feels that CPAP is preferable because the APAP doesn't respond until you have had at least two events (this probably depends on the machine's algorithm). His theory is that the goal is zero events, so you are better off to have a fixed pressure that prevents ALL potential apneas than an adjusting pressure that needs two events before it will increase pressure to prevent more. I see the point, but I'm not sure that's true for people who have a wide pressure differential in REM sleep. My AHI is so low (0.2 on average) on APAP that it doesn't seem significant.
I often need 6 to 8 cm more in REM than in non REM. My OSA is 5 times worse in REM.
REM amounts to about 20% of the night on a good night....ain't no way in hell I am going to use 15 cm pressure all night long just to deal with what I might need 20% of the night. :shock:

Going by that reasoning from that person...hell, lets just give everyone a fixed pressure of 20 or 25 and be done with it. Kill everything in sight all night long. That person must not actually have to use a cpap is all I can think of. :roll:

As for people with CHF....they are already very sick anyway. They need to have everything monitored very closely as it doesn't take much of anything to throw them into a tailspin.

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Re: Dealing with angry sleep docs

Post by chunkyfrog » Tue Oct 29, 2019 2:50 pm

Agreed.
Cpapian's doctor is a control freak, and is not above LYING to maintain his godlike status.

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Dog Slobber
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Re: Dealing with angry sleep docs

Post by Dog Slobber » Tue Oct 29, 2019 3:26 pm

Janknitz wrote:
Tue Oct 29, 2019 2:35 pm
palerider wrote:
Mon Oct 28, 2019 8:05 pm
Dog Slobber wrote:
Mon Oct 28, 2019 7:53 pm
. She did tell me she prefers that I keep the machine in CPAP mode. I shared why I was in APAP mode and then politely, but firmly told her, when my machine was being managed by the Sleep Clinic my AHI was 3.5, since I optimized it myself, it's under 1.
My only guess is that some doctors prefer CPAP mode because they don't understand APAP mode... and how it can benefit many, if not most, people.
I talked to someone who feels that CPAP is preferable because the APAP doesn't respond until you have had at least two events (this probably depends on the machine's algorithm). His theory is that the goal is zero events, so you are better off to have a fixed pressure that prevents ALL potential apneas than an adjusting pressure that needs two events before it will increase pressure to prevent more. I see the point, but I'm not sure that's true for people who have a wide pressure differential in REM sleep. My AHI is so low (0.2 on average) on APAP that it doesn't seem significant.

And then there are the people who are very sensitive to pressure changes and their sleep is disturbed by pressure increases. They may need a fixed pressure just to be able to maintain sleep.

I think it has to be an individual decision based on a person's own response. What I hate to see is doctors who will ONLY prescribe a CPAP so that you don't have the option to test out which is best for YOU, or to do a mini test titration. APAPs can be set with a fixed pressure, CPAP's limit options.
Well the ResMed algorithm does not require two events before responding, and I'm not aware of any APAP algorithm that requires two events before responding. Flow limitations and snores can cause an increase in pressure.

Even if what your friend is correct, (which I doubt) then a zero event goal is more obtainable with APAP over CPAP. All one would have to do is, set the minimum pressure to the same as what the CPAP is, thereby giving identical preventative therapy and still having the ability to increase as necessary.

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palerider
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Re: Dealing with angry sleep docs

Post by palerider » Tue Oct 29, 2019 3:49 pm

ChicagoGranny wrote:
Tue Oct 29, 2019 1:14 pm
mike291068 wrote:
Tue Oct 29, 2019 12:24 pm
Bear with me.
Bear with ME.
OMG, don't anybody misspell it 'bare with me'.

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palerider
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Re: Dealing with angry sleep docs

Post by palerider » Tue Oct 29, 2019 3:53 pm

Janknitz wrote:
Tue Oct 29, 2019 2:35 pm
I talked to someone who feels that CPAP is preferable because the APAP doesn't respond until you have had at least two events (this probably depends on the machine's algorithm). His theory is that the goal is zero events, so you are better off to have a fixed pressure that prevents ALL potential apneas than an adjusting pressure that needs two events before it will increase pressure to prevent more. I see the point, but I'm not sure that's true for people who have a wide pressure differential in REM sleep. My AHI is so low (0.2 on average) on APAP that it doesn't seem significant.
I, like many people, would rather have a lower pressure and let the machine handle exceptions... instead of having pressures high enough to deal with every possible eventuality.
Janknitz wrote:
Tue Oct 29, 2019 2:35 pm
And then there are the people who are very sensitive to pressure changes and their sleep is disturbed by pressure increases. They may need a fixed pressure just to be able to maintain sleep.
I'll posit this.. are they 'sensitive to pressure changes' or... (my theory) are they having their sleep disturbed by the breathing events (which we all know that messes up sleep) then the machine raises pressure, and they wake up and blame the pressure change, when in actuality, it's the *breathing problems* that woke them up and knocked them out of a good sleep.

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Re: Dealing with angry sleep docs

Post by palerider » Tue Oct 29, 2019 3:57 pm

Janknitz wrote:
Tue Oct 29, 2019 2:38 pm
Cpapian wrote:
Tue Oct 29, 2019 1:13 pm
I did have an angry response from my sleep doctor when I changed my settings. He told me I could damage my lungs (I forget the name of it) and made me promise to never do that again. At that time, I needed my Rx for my machine. I crossed my fingers and the rest is history.

I only mention it so if you want to be prepared for some potential throwback you have some time to prepare your response.
At the ASAA conference one doctor did talk about the fact that people with congestive heart failure could be harmed by too much pressure and that too much pressure can contribute to CHF in a person who already has risk factors. I never heard that before. That is a fairly common condition.
There has been *one* (very faulty) study that seemed to indicate a very *very* slight chance that people near death anyway might be more likely to die when using generations old ASVs for 3 hours a night and having 'untreated' levels of AHI...

Read some of the problems: https://journal.chestnet.org/article/S0 ... 5/fulltext

But, everybody just lost their shit and are running around waving their hands like the sky is falling.

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mike291068
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Re: Dealing with angry sleep docs

Post by mike291068 » Tue Oct 29, 2019 4:11 pm

palerider wrote:
Tue Oct 29, 2019 3:49 pm
ChicagoGranny wrote:
Tue Oct 29, 2019 1:14 pm
mike291068 wrote:
Tue Oct 29, 2019 12:24 pm
Bear with me.
Bear with ME.
OMG, don't anybody misspell it 'bare with me'.
??Inside "cpap humor" joke?

mike291068
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Re: Dealing with angry sleep docs

Post by mike291068 » Tue Oct 29, 2019 4:19 pm

Hopefully I don't get crucified and it's ok for the "I told you so's" lol but I posted this on other thread also... I actually heard back from my doc!! Via email, He said my numbers look good and based on the awakenings and our original consultation ordered a titration test at sleep lab. For whatever reason today I felt totally spaced out. I'm thinking of going back to 5 and see how that goes. Aerophagia isn't terrible but still there. I learned my lesson and will be more patient going forward. No scolding necessary. Please and thank you! :D

Oh and he made no reference to me changing the settings, who knows if he even noticed?? :shock:

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Grace~~~
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Re: Dealing with angry sleep docs

Post by Grace~~~ » Tue Oct 29, 2019 5:08 pm

palerider wrote:
Tue Oct 29, 2019 3:49 pm
ChicagoGranny wrote:
Tue Oct 29, 2019 1:14 pm
mike291068 wrote:
Tue Oct 29, 2019 12:24 pm
Bear with me.
Bear with ME.
OMG, don't anybody misspell it 'bare with me'.
Image
Began XPAP May 2016. Autoset Pressure min. 8 / max 15. Ramp off. ERP set at 2. No humidity. Sleepyhead software installed and being looked at daily, though only beginning to understand the data.

SDBud
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Re: Dealing with angry sleep docs

Post by SDBud » Tue Oct 29, 2019 6:17 pm

mike291068 wrote:
Mon Oct 28, 2019 2:22 pm
I am anticipating some blowback from my sleep doc when he finds out I "hacked" the whole system rather than wait for my scheduled appt in December to review progress. I am wondering if anyone has dealt with this and any advice would be welcome. I don't really know what I am doing but I do know I am not going to wait for their timeline to get better. I will figure it out one way or another. I am on my way to living again and very excited/borderline impatient with this whole process. I do have a call into him but who knows how long it will take for him to get back to me. Thanks
If you are getting good results, then there is NO good reason for any Doctor to be upset.

I changed my settings and got GREAT results, and the Sleep people at the VA decided they only needed to see me every 2 years now, instead of every year.
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