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Diagnosed - what now?
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Route67 Offline

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Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #1
Diagnosed - what now?
Hi again all....

I was diagnosed in early july; after almost a year of severe nocturia and visits to 3 urologists, a nephrologist [kidney specialist] and a couple GP's, I finally nailed it when I visited a sleep clinic and did the overnight test and was told I have severe sleep apnea, with a number of 29.5. They loaned me a CPAP for a week but I never really got used to it.

Now back in the states {I live part-time in Mexico}, I need to get started again but would certainly like to skip the overnight sleep trial and move right on to the purchasing and getting-used-to-it phase. The machines and masks are much cheaper here, based on what I have seen on the Supplier list of this forum.

So...... can I just buy the machine {A Fisher-Paykel Icon w/ humidifier was the one they loaned me} and a mask and get started? Or do I *have* to visit a sleep clinic here in New Hampshire? My worry being that they would want to start from square one, sell me the device and masks, do an overnight trial, monitor my progress, etc....when I already have written proof [in English] from a trusted sleep clinic in Mexico City. I think I have read here that a "DME" has to set the machine properly and monitor me over time, and they would probably also like to get me to buy from them, no?

Bear in mind my insurance deductible is high, so anything I am spending will be out of pocket. I will also do a consultation with a local dentist who swears by the OAT device, but in all reality I am quite sure I need a CPAP machine and asap; I haven't felt good in months and months.

Thanks one and all!
08-14-2012 10:50 AM
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PaulaO2 Offline
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Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #2
RE: Diagnosed - what now?
I answered this question in your other thread.

An AHI of 29 is just under the threshold for 'severe' sleep apnea. As if that makes a difference, right?

There's a few threads here on the Icon. Do a forum search for either Fisher-Paykel or Icon and see what comes up. Memory is telling me it is low end. If you are paying out of pocket, Resmed S9 Autoset or the equivalent Respironics (DS510?) Auto is the way to go. Supplier #2 sells used and open box machines for really good prices.

An Auto would allow you to basically self-titrate. You get the sleep study results and look to see what pressure was recommended. If the pressure was, say, 8, then you'd set the auto to 6 to 10. Then you'd use it a week and look at the data. If you are regularly hitting the upper number, raise it a point or two. If you never get up there but stay around 7, leave it alone and enjoy the sleep.

The hard part is going to be the mask. There's a lot of them out there and it can take a LOT until you find the one you like. I have an odd nose (and odd everything else, actually) and a nasal mask didn't work for me so I use the nasal pillows. I tried one of the hybrids (nasal pillow and part that covers the mouth) but hated it. I do not breathe through my mouth at night so I didn't need it anyway.

Ask this dentist fellow if you can try one without buying it. But, like Zimlich said in the other thread, there's no way to tell if it is working or not. An oximeter would help but it is very limited. You'd have to first use one every night for a week or so to see what your oxygen saturation gets to each night. That would set the base line. Then you'd have to use it and the oral device for a week or more then again look at the data. If it is significantly better than without it, consider it done. But if there's little change or if the O2 still does not get into the safe zones, then you will have to use a CPAP.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-14-2012 11:01 AM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #3
RE: Diagnosed - what now?
Thanks again, Paula.....looking over the list on supplier number 2 right now, and also just spoke with a local friend who has sleep apnea.

Same as I have read here, he says since using his machine the difference in sleeping is amazing and feeling better the next day as well. He also reminded me that NOT using a machine is a perfect setup for some serious health problems down the road- or right now.
08-14-2012 11:27 AM
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PaulaO2 Offline
Wiki Editor
Moderators

Posts: 8,065
Joined: Feb 2012

Machine: S9 Autoset
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: H5i
CPAP Pressure: 14-20
CPAP Software: SleepyHead

Other Comments: Ehlers-Danlos Syndrome, Hypermobility Type; chronic sarcasm

Sex: Undisclosed
Location: western NC, USA

Post: #4
RE: Diagnosed - what now?
Exactly. It isn't "just" a sleep issue. It is a life issue.

Some people take a long time to adjust. Many give up far too soon. Yet some put on the mask and it works for them immediately.

PaulaO2
Apnea Board Moderator
www.ApneaBoard.com


Breathe deeply and count to zen.

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-14-2012 12:34 PM
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Sleepster Offline
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Posts: 4,993
Joined: Feb 2012

Machine: ResMed AirCurve10 VAuto
Mask Type: Full face mask
Mask Make & Model: F&P Simplus
Humidifier: HumidAir and SlimLine Hose
CPAP Pressure: MaxI 13.6 | MinE 5.2 | PS 4.4
CPAP Software: ResScan SleepyHead

Other Comments: Diagnosed Nov 2011. Conquered aerophagia.

Sex: Male
Location: Houston, Texas

Post: #5
RE: Diagnosed - what now?
Supplier #1 has the PRS1 APAP Model 550P on sale right now. (Item #DS550P-DS550S). You will need a prescription, though, to purchase it.

Sleepster
Apnea Board Moderator
www.ApneaBoard.com


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
08-14-2012 01:09 PM
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zonk Offline

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Posts: 7,908
Joined: Feb 2012

Machine: A10 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Activa LT
Humidifier: Integrated /ClimateLineAir
CPAP Pressure: 9/13
CPAP Software: ResScan

Other Comments: CPAP since Nov 2010

Sex: Male
Location: Australia

Post: #6
RE: Diagnosed - what now?
(08-14-2012 10:50 AM)Route67 Wrote:  So...... can I just buy the machine {A Fisher-Paykel Icon w/ humidifier was the one they loaned me} and a mask and get started?
If your apnea is worse at some sleep positions ... than autoPAP would be the best therapy choice.
If buying the Icon stay away from the Novo which is not data capable machine
My first choice would be S9 AutoSet bc it offer better data reporting on the screen, supported by ResScan and SleepyHead software..
(This post was last modified: 08-14-2012 04:41 PM by zonk.)
08-14-2012 04:08 PM
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archangle Offline
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Posts: 3,159
Joined: Feb 2012

Machine: ResMed S9 AutoSet
Mask Type: Nasal pillows
Mask Make & Model: ResMed Swift FX
Humidifier: ResMed S9 H5i
CPAP Pressure: 16-20
CPAP Software: ResScan SleepyHead EncoreBasic

Other Comments: Happy PAPper

Sex: Undisclosed
Location: USA

Post: #7
RE: Diagnosed - what now?
In my opinion, anything other than CPAP borders on quackery. They don't work as well, if at all, often cost more, and delay getting real treatment, CPAP.

You do need a prescription to get a CPAP machine through normal channels. Insurance usually requires a sleep study before they'll pay. Local DMEs (CPAP sellers) will rob you blind if you don't buy it with insurance. Online suppliers are cheaper, but getting the right mask may be more difficult, and you usually can't get them paid by insurance.

Some buy used machines on craigslist.

Get the ResMed S9 AutoSet or the PRS1 Philips Respironics Model 60 Auto. Get a heated humidifier to go with it. These are Auto CPAP and will do everything a manual CPAP will do, and usually won't cost anything more to you. If you have a pig headed doctor who won't prescribe APAP, the S9 Elite or PRS1 PRO models are good manual CPAPs. Do NOT accept an S9 Escape or Escape Auto, or a PRS1 PLUS. These do not collect the data you need to manage your therapy.

Don't bother with any of the other CPAP machines unless you get a really good deal. Including older machines from the same manufacturer. The other machines all have limitations for data collection.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
08-14-2012 08:13 PM
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Route67 Offline

Preferred Members

Posts: 68
Joined: Aug 2012

Machine: S9 AutoSet
Mask Type: Nasal mask
Mask Make & Model: Resmed
Humidifier: Resmed
CPAP Pressure: Auto
CPAP Software: SleepyHead Other Software

Other Comments: On CPAP for 2 years, still can't sleep. Edit; make that 4 years now, still can't sleep.

Sex: Male
Location: New Hampshire, USA

Post: #8
RE: Diagnosed - what now?
Thanks a lot, everybody. I went with the advice from Paula and called secondwindCpap today.......nice people, took my order very effectively and got it out today; a 2nd-hand Gently Used ResMed S9 AutoSet and Accessories [including hose]for $549; the nasal mask was 89 more.

I am happy with the purchase and seriously can't wait to use it. I fully understand that it will be difficult to get used to, I had a very hard time with my trial period last month. But I also know that my brain is not working the way it should be because I am over-tired in the daytime and feel lethargic and lousy most of the time.

Will be here early next week, can't wait!!

cheers one and all.......
08-14-2012 08:48 PM
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trish6hundred Offline

Advisory Members

Posts: 6,436
Joined: May 2012

Machine: Resmed S9 AutoSet for Her
Mask Type: Full face mask
Mask Make & Model: Fisher & Paykel Simplus
Humidifier: H5i Heated Humidifier
CPAP Pressure: 10 - 7-20 Cm H2O
CPAP Software: Not using software

Other Comments: I started CPAP in 2008. Totally blind since birth.

Sex: Female
Location: Missouri, USA

Post: #9
RE: Diagnosed - what now?
Hi again Route67, Glad to hear that you found a new, (to you,) machine and accessories. Best of luck and continue to keep up posted on how you do with your CPAP therapy.

trish6hundred
08-14-2012 10:50 PM
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zimlich Offline

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Posts: 392
Joined: Feb 2012

Machine: Respironics PR System One BiPap Auto SV Advanced
Mask Type: Nasal mask
Mask Make & Model: ResMed gel Nasal Mask
Humidifier: System One
CPAP Pressure: 8-20 ASV, 8 EPAP,PS 12
CPAP Software: Not using software

Other Comments: I use the Quattro FFM when necessary

Sex: Female
Location: Norfolk, VA

Post: #10
RE: Diagnosed - what now?
Route67, how are things going? Please keep us posted.
08-20-2012 09:07 AM
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