Ever Changing Protocol of CPAP

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
MiLady56
Posts: 11
Joined: Thu Apr 16, 2015 6:24 am

Ever Changing Protocol of CPAP

Post by MiLady56 » Thu Apr 23, 2015 12:06 pm

I have only been on this site a short while. But I have read so much. This site is very helpful, but meshing all the info and fitting it together with the everchanging protocol of sleep science is difficult. Everybody seems to want their cut...the business of sleep is overreaching the treatment of sleep.
So I have questions...1) just how often should one expect to be required to have a sleep study? The opinions are all over the place on this topic. The DME need yearly Rx updates, the dr demands new partial sleep study or at home sleep study to ensure mask fit before s/he can give Rx, I feel caught in a loop.
2) I know most of users on here monitor themselves, taking charge of their health. This is great, but what good does it do if I cant find a dr to look at data? Or believe me.
Before I buy a new machine, educate myself on the software, get a better computer....can I ask why the "loop de loop".
3) ah, another question...Dr says CPAP causes arterial fibrillation? I thought sleep apnea causes AF! Chicken or the egg question

_________________
Mask
Additional Comments: model#P00793903...250P... and have a modem model 100200w, then bar ode D00019362 D6B9, then ENCORE ID.
Consider the source;-)

Janknitz
Posts: 8410
Joined: Sat Mar 20, 2010 1:05 pm
Location: Northern California

Re: Ever Changing Protocol of CPAP

Post by Janknitz » Thu Apr 23, 2015 12:29 pm

Most people aren't savvy enough to understand their sleep apnea and how it is treated, let alone monitor their own treatment. Some people shouldn't go without professional help because they have complex issues or they aren't smart enough for their own good. But most of us can do a decent job of self monitoring and then the professionals are there when we need them. And most of us are smart enough to know when we need help. Not everyone, some people are a real danger to themselves, but they would be no matter what. The fact that you are asking the questions you are tells me that you are a capable person who can act in her own self-interest.

As you surmise, a lot of CPAP stuff is a business, and we are basically the cash cow for all these entities--our insurers (we SAVE them money when we treat our apnea correctly), our doctors (many of whom don't give a rat's tushie about anything but making lots of money providing and interpreting your sleep study--but there are some gems out there, too), and the DME's for whom we are either a PITA or a profit center, depending on how annoyingly educated we become. That's why some people here choose to bypass them all. Since CPAP is an expensive endeavor, many of us have to play along to a certain degree with the stupid systems in place, but we can choose how much and how we do that.

As for your doctor's claim that CPAP causes AFIB, make him show you the studies that he is basing his claim on. My guess is that he cannot. Is he trying to sell you surgery as an alternative? Or does he just not want to be bothered by having to take the steps necessary to get you referred for a sleep study and treatment? Or, is he just a pompous *$$???
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

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Ever Changing Protocol of CPAP

Post by Julie » Thu Apr 23, 2015 12:30 pm

Atrial (not arterial) fib can be caused by apnea, and Cpap can certainly help, but that does not mean that in a given patient on Cpap there's any guarantee that A fib (or other arrythmias) will magically disappear... too other many factors could contribute. Using Cpap tho' should not cause it (as Pugsy said above).

User avatar
TangledHose
Posts: 862
Joined: Wed Mar 13, 2013 11:13 am
Location: Centennial, CO

Re: Ever Changing Protocol of CPAP

Post by TangledHose » Thu Apr 23, 2015 12:36 pm

The Dr. Has the cause and effect totally backwards in terms of A-Fib.........CPAP therapy for those with Obstructive Sleep Apnea should reduce A-Fib.

http://www.news-medical.net/news/201504 ... apnea.aspx

As far as the loop you speak of, I had my one and only Sleep Study done eleven years ago which gave me a diagnosis of Severe Sleep Apnea. My primary care physician wrote me a prescription for CPAP/APAP/and Mask at that time -- I have been using that original prescription to purchase machines, and masks ever since, and with the information available from this forum I have been successfully treating my Sleep Apnea ever since that initial diagnosis from 2004 with no need for further sleep studies or any additional prescriptions other than the one I have from eleven years ago. So I guess I would say the protocol loop is what you make of it.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

MiLady56
Posts: 11
Joined: Thu Apr 16, 2015 6:24 am

Re: Ever Changing Protocol of CPAP

Post by MiLady56 » Thu Apr 23, 2015 1:12 pm

Just As I thought...cause and effect reversed. thks so much.
I think I will have to get new dr. When my mask broke last fall, he wrote an Rx back for "CPAP supplies". Six months later, I request another Rx as my Forehead support broke. He says he doesn't know what to write. I tell him CPAP Supplies, but this time he balks. He asks me to bring mask in. I do, leaving it at front desk. Two days and 3 messages unanswered later, I go to office to ask status. No one will talk to me. I am given my mask back. Having an appt 5 days later, I met with dr who asks if I need prrscriptions. I say yes, my CPAP mask. He asks if i brought it in. He claims he was unaware that I had left the mask for 2 days and visited the office for 45 min trying to talk with someone. He still refuses to give Rx for CPAP and now says I need to do another sleep study to ensure mask fit bec poor mask fit and Lunesta equals death. He explains that poor mask fit causes AF, Lunesta will not let me wake up to breathe so I die.
Thats when I get on this site to make sense of all this.Everybody tells me so much.
Well, out of curiousity, I went to DMEtoday and got them to write a note. It said...."We need Rx for CPAP Supplies in order to get paid by insurance company. If the Rx asks for a letter verifying patient visited RT who properly fit mask, we will be glad to supply said letter."
I took this to Dr's help window. Guess What??? the person at the help desk wrote up the Rx and gave it to me. Like Magic.
Well, then I asked if I could leave a note for the dr. She said yes! So i asked if the RT at the DME gives me a letter verifying mask fit will that satisfy him so that he can feel safe prescribing Lunesta. We shall see?
New Dr., right? But how do I know the next one won't do the same?
Thxs for listening, I needed to vent. Sorry if I bored ya'll.

_________________
Mask
Additional Comments: model#P00793903...250P... and have a modem model 100200w, then bar ode D00019362 D6B9, then ENCORE ID.
Consider the source;-)

User avatar
Julie
Posts: 19898
Joined: Tue Feb 28, 2006 12:58 pm

Re: Ever Changing Protocol of CPAP

Post by Julie » Thu Apr 23, 2015 1:17 pm

Are you kidding - it's a great soap opera ! I hope things go better for you in future though... what a mess, what a jerk, yuck!

MiLady56
Posts: 11
Joined: Thu Apr 16, 2015 6:24 am

Re: Ever Changing Protocol of CPAP

Post by MiLady56 » Thu Apr 23, 2015 1:20 pm

" I have been using that original prescription to purchase machines, and masks ever since, and with the information available from this forum I have been successfully treating my Sleep Apnea ever since that initial diagnosis from 2004 with no need for further sleep studies or any additional prescriptions other than the one I have from eleven years ago."

Nope, every DME in my area requires yearly update of Rx. It is what THEY make of it! It is apparently different across the country, with diff drs.... a scam.But?! If you are suggesting that newbies smart enough to come here before they buy their machine, get a forever Rx, then yes. Newbies pls read the newbie section for questions to ask, best machines, monitoring schedules, find out before doing anything!!!

_________________
Mask
Additional Comments: model#P00793903...250P... and have a modem model 100200w, then bar ode D00019362 D6B9, then ENCORE ID.
Consider the source;-)

User avatar
Jay Aitchsee
Posts: 2936
Joined: Sun May 22, 2011 12:47 pm
Location: Southwest Florida

Re: Ever Changing Protocol of CPAP

Post by Jay Aitchsee » Thu Apr 23, 2015 1:46 pm

MiLady56 wrote:Nope, every DME in my area requires yearly update of Rx. It is what THEY make of it! It is apparently different across the country, with diff drs.... a scam.But?! If you are suggesting that newbies smart enough to come here before they buy their machine, get a forever Rx, then yes. Newbies pls read the newbie section for questions to ask, best machines, monitoring schedules, find out before doing anything!!!
I think (my opinion) that this is being driven by insurance companies. Some insurance companies require an updated Rx annually to justify payments to DME. Since some insurance companies require this, I think most DME just require it of everyone to cover themselves. Rx's don't expire. I sent my years old Rx to our host, CPAP.com, and my orders were filled, no problem. Of course, there was no insurance company involved. You might ask your insurance company if they require your Rx to be updated annually. If not, I see no reason a DME can not fill your order. Of course, if it's the DME policy then...who knows?

My advice is to shop until you can find a Dr. you can work with. I went through 5 or so, before I found one.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: S9 Auto, P10 mask, P=7.0, EPR3, ResScan 5.3, SleepyHead V1.B2, Windows 10, ZEO, CMS50F, Infrared Video

User avatar
Nick Danger
Posts: 621
Joined: Mon Jun 09, 2014 3:13 pm

Re: Ever Changing Protocol of CPAP

Post by Nick Danger » Thu Apr 23, 2015 2:19 pm

Jay Aitchsee wrote: I think (my opinion) that this is being driven by insurance companies. Some insurance companies require an updated Rx annually to justify payments to DME. Since some insurance companies require this, I think most DME just require it of everyone to cover themselves. Rx's don't expire.
If so, those are insurance companies with poor judgment - they are costing themselves more in sleep studies and doctor bills than they can ever hope to save.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: APAP mode, minimum pressure = 9. No ramp, EPR = 3, medium. Soft cervical collar. Sleepyhead software.

User avatar
TangledHose
Posts: 862
Joined: Wed Mar 13, 2013 11:13 am
Location: Centennial, CO

Re: Ever Changing Protocol of CPAP

Post by TangledHose » Thu Apr 23, 2015 2:37 pm

Before I got smart enough to ditch Apria, they had called me to let me know that my first five years were up on the first machine that I had acquired through them as my DME.

They got me a new machine through insurance (not the same insurance that I had at first) without any need for a new sleep study or new prescription.......they simply used what was on file from five years before.

Since that time I have decided to primarily use cpap.com for a home machine, an additional travel machine, several masks since my insurance deductible is so high it's basically out of pocket and the prices at cpap.com are so much better than brick and mortar DME. Still on my now eleven year old original prescription with no problems. I do apply for reimbursement from my insurance company and they have always accepted the purchases, but it only goes to my deductible so I don't really get reimbursed, but the amount I paid is deducted from my deductible balance.

This brings up an important reminder: Always request your own copy of any cpap prescription for your future use!

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

herefishy
Posts: 1012
Joined: Sun Oct 30, 2005 8:24 am

Re: Ever Changing Protocol of CPAP

Post by herefishy » Thu Apr 23, 2015 2:41 pm

I'm either fortunate or stupid, and am not going to worry about which. When diagnosed 10 years ago, I was not very severe, didn't have much trouble adjusting, and have gotten along fine since with no other contact with the medical profession. When I need a new mask, I just get on e-bay and get one, and same with any other supplies, and when I need a new machine, I just get a second hand one from this forum. I sleep fine, and feel fine.

_________________
Mask: Mirage Activa™ LT Nasal CPAP Mask with Headgear
Additional Comments: pressure 10-12

User avatar
TangledHose
Posts: 862
Joined: Wed Mar 13, 2013 11:13 am
Location: Centennial, CO

Re: Ever Changing Protocol of CPAP

Post by TangledHose » Thu Apr 23, 2015 4:09 pm

At one point about three years into my initial CPAP treatment period my primary care physician discussed with me the possibility of repeating the sleep study as a follow-up. I presented her with my print outs from SleepyHead showing my compliance and also that my APAP machine was set properly and was adjusting to my pressure needs as designed, my average AHI number for several years of data was a respectable 1.3 and probably in reality that AHI number is lower because some of the Centrals were "awake" centrals that would not be flagged during an official sleep study. She looked over my data and agreed that a follow-up sleep study would not provide any additional useful data that I didn't already have from SleeplyHead and my APAP. She promptly dropped the subject of any follow-up sleep studies.

Be your own advocate.

*** One caveat to the above information: although I was classified in the "Severe Apnea" category my Apnea is mostly vanilla OSA, I do not have complex apnea, so my justifying not doing another sleep study may not be directly applicable to someone else that is suffering from a more complex situation that might require more professional follow-up and treatment.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Simplus Full Face CPAP Mask with Headgear
Additional Comments: Also own F&P Icon Auto for backup and travel; and a Transcend when packing space is limited
Link to Sleepyhead:
http://sleepfiles.com/SH2/

yaconsult
Posts: 1099
Joined: Fri Nov 14, 2014 10:43 pm
Location: "Silicon Valley", CA

Re: Ever Changing Protocol of CPAP

Post by yaconsult » Thu Apr 23, 2015 6:23 pm

In my experience, the only one likely to care about monitoring is the insurance company, most likely through the DME/equipment supplier. And they are only really interested in knowing that the machine that they are paying or have paid for is being used. That's it. Not how well it's working.

Sleep studies are VERY expensive. Once a diagnosis is made, I can't see either a doctor or insurance company wanting to do them again for some years IF your machine indicates that you are using it on a regular basis based on the information stored on the machine.

In my case, I had a new doctor and the medical facility had a sleep lab that didn't exist when I had my home study done by a technician about seven years go. So I agreed to go for a new study in January.

_________________
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear
Additional Comments: January 2015 Sleep Study Results: Apnea/Hypopnea Index (AHI): 80.2, Sleepyhead

Janknitz
Posts: 8410
Joined: Sat Mar 20, 2010 1:05 pm
Location: Northern California

Re: Ever Changing Protocol of CPAP

Post by Janknitz » Thu Apr 23, 2015 6:34 pm

Your doctor is an IDIOT!

Write him a letter asking for the following prescription:

"CPAP mask of patient's choice, CPAP supplies as needed. Duration of need 99 years". You get the RX, not your DME, so you can go wherever you want--give DME a copy, never the original.

Unless your state or insurer requires annual updates to your prescription this should suffice.

Your doctor doesn't even know what he's looking at when he looks at your mask. He's not a DME, he's a bozo!

If he balks, find another doctor. A podiatrist can write a script for CPAP mask and supplies, so can a dentist.
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

User avatar
LSAT
Posts: 13229
Joined: Sun Nov 16, 2008 10:11 am
Location: SE Wisconsin

Re: Ever Changing Protocol of CPAP

Post by LSAT » Thu Apr 23, 2015 7:20 pm

I also had a sleep study 6 years ago...that was it. I used my original prescription for 5 years until I needed a new machine. My newest prescription is now 1 year old and I don't expect to need a new one for another 4-5 years. Most people can monitor their own therapy with the proper machine.

_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier
Mask: Fisher & Paykel Vitera Full Face Mask with Headgear (S, M, or L Cushion)
Additional Comments: Back up is S9 Autoset...... Buckwheat hull pillow
Last edited by LSAT on Fri Apr 24, 2015 4:16 pm, edited 1 time in total.