OT sleep study update

[Guest guest]

So I got the results for my sleep study.

I don't have the report myself.. still waiting to get it.

My doc called me and even with the perfect night sleep at the center they

detected numerous abnormalities that I need to go back for a CPAP study. They

also mentioned that I may need some kind of dental device?

All of this is wildly confusing.

Jodi

[Guest guest]

At 06:51 AM 12/4/2009, you wrote:

So I got the results for my

sleep study.

I don't have the report myself.. still waiting to get it.

My doc called me and even with the perfect night sleep at the center they

detected numerous abnormalities that I need to go back for a CPAP study.

They also mentioned that I may need some kind of dental device?

All of this is wildly confusing.

Dental devices can be helpful for some, but frankly, I don't feel you can

treat apnea effectively with just a device.

The CPAP titration is like your first test, only with a CPAP on.

INSIST on trying on a bunch of masks before the titration, and find one

you can deal with. Otherwise it'll be very difficult.

There are something like 80 different sleep ailments that can be detected

with a polysomnogram.

I do hope, dear Jodi, that you don't insist on having all of

them.

One thing: when you get your CPAP, INSIST on a fully data capable machine

AND the software to read it. You'll have to buy a card reader and the

software. Only with a fully data capable machine can you monitor your own

treatment and take control of your life the way you have with your

diet.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

>

>

> There are something like 80 different sleep ailments that can be

> detected with a polysomnogram.

>

> I do hope, dear Jodi, that you don't insist on having all of them.

LOL, Marilyn.

Knowing Jodi....

Mara

[Guest guest]

Hi Marilyn,

> Dental devices can be helpful for some, but

> frankly, I don't feel you can treat apnea effectively with just a device.

Yeah, my doc is very against me having a dental device.

She wants me to have an appt with the sleep doc before the CPAP test as there

are a whole bunch of abnormalities besides a couple of apnea episodes that were

light? I don't really understand but yea they said I woke up like over 80 times

or something? And I had a bunch of jerking.. they saw the gasping too. Very

mild snoring.

My doc said that if that was a really good night for me- what would happen on a

normal night? Not even looking at a bad night.

I don't understand any of this. I am relieved and totally overwhelmed. I mean

all of the percentages in that report. WTF does it mean?

> The CPAP titration is like your first test, only with a CPAP on.

>

> INSIST on trying on a bunch of masks before the

> titration, and find one you can deal with. Otherwise it'll be very difficult.

OK.

> There are something like 80 different sleep

> ailments that can be detected with a polysomnogram.

What is a polysonogram? And is this something I need?

Is it separate than the CPAP test?

> I do hope, dear Jodi, that you don't insist on having all of them.

What do you mean, like that my body has more ailments or like insisting on the

polysonogram. Sorry, I'm a bit dense I only slept 2 hours last night My gut

is doing amazingly better though!! YAY!

Considering going on vacation but now with this sleep stuff- not sure. How long

does this whole process of morphing into a sundown klingon take?

> One thing: when you get your CPAP, INSIST on a

> fully data capable machine AND the software to

> read it. You'll have to buy a card reader and the

> software. Only with a fully data capable machine

> can you monitor your own treatment and take

> control of your life the way you have with your diet.

You mean a fully data capable machine for the test or like for home?

Jodi

[Guest guest]

My friend Mara..

Aren't you the one who has told me time and time again to think positively?

right back at ya..

*chuckling*

Jodi

>

> >

> >

> > There are something like 80 different sleep ailments that can be

> > detected with a polysomnogram.

> >

> > I do hope, dear Jodi, that you don't insist on having all of them.

>

> LOL, Marilyn.

>

> Knowing Jodi....

>

> Mara

>

[Guest guest]

Like duh! (In Homer Simpson voice)

Marilyn, I'm sucha yutz.. Now I get what you wrote..

*scratching and banging head against SCD kitchen wall*

Jodi

>

> >

> >

> > There are something like 80 different sleep ailments that can be

> > detected with a polysomnogram.

> >

> > I do hope, dear Jodi, that you don't insist on having all of them.

>

> LOL, Marilyn.

>

> Knowing Jodi....

>

> Mara

>

[Guest guest]

Jodi, a few more illnesses than the average bear!

(But who wants to be an average bear anyway!)

Mara

> Like duh! (In Homer Simpson voice)

> Marilyn, I'm sucha yutz.. Now I get what you wrote..

> *scratching and banging head against SCD kitchen wall*

> Jodi

>

>

>>

>>>

>>>

>>> There are something like 80 different sleep ailments that can be

>>> detected with a polysomnogram.

>>>

>>> I do hope, dear Jodi, that you don't insist on having all of them.

>>

>> LOL, Marilyn.

>>

>> Knowing Jodi....

>>

>> Mara

>>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

Yeah, my doc is very against me

having a dental device.

She wants me to have an appt with the sleep doc before the CPAP test as

there are a whole bunch of abnormalities besides a couple of apnea

episodes that were light? I don't really understand but yea they said I

woke up like over 80 times or something? And I had a bunch of jerking..

they saw the gasping too. Very mild snoring.

My doc said that if that was a really good night for me- what would

happen on a normal night? Not even looking at a bad night.

I don't understand any of this. I am relieved and totally overwhelmed. I

mean all of the percentages in that report. WTF does it

mean?

First, don't panic. Second, don't panic. Third.... do you know where your

towel is? And did I mention, don't panic?

Polysomnogram = sleep study. Fancy name for it. You just had

one.

XPAP is a generic name for CPAPS, BiPaps, and APAPs. A CPAP gives a

constant pressure. A Bipap gives one inhalation pressure, and one

exhalation pressure. An APAP, properly set up, will vary its single

pressure, depending on needs.

Now, you will want to obtain from the sleep lab a copy of 1] the

doctor's dictated results from both your in-lab sleep evaluation study

(which you just had) AND your second night titration study (1-2 pages

each) -- which you haven't had yet. That's the CPAP study.

PLUS you want the full scored data summary report w/condensed graphs from

both PSGs (5+ pages each) AND a copy of your equipment order (script).

These are all part of your medical records and assuming your are in the

USA you have a legal right to these copies under HIPAA.

I didn't know enough to ask for these and I'm still trying to extract

them from the sleep lab a year later. Because I didn't know what I

was asking for. You do.

Once you have had your titration, you will probably see the doc again to

get the results, and a prescription for your CPAP. This prescription is

filled by a DME.

Be aware that most local DME (durable medical equuipment) suppliers tend

to do the bulk of their xPAP business w/one particular manufacturer and

thus get a bulk price on the devices they order and so prefer to provide

a device from that particular manufacturer. Usually this will be

Respironics or Resmed. If they are offering a Respironics if it has Plus

in the name you don't want it, it is not fully data capable despite it

may or may not have a data card. If they are offering a Resmed you do NOT

want one w/Compact or Escape in the name, they are not fully data capable

regardless of whether they have a data card or not.

Most insurances pay for xPAPs by insurance code (HCPCS) NOT by brand or

model. All CPAPs from bare bone compliance data capable only thru fully

data capable CPAPs " and " APAPs (auto PAPs) are the SAME HCPCS

code: e 0601. Obviously the bare bone CPAPs cost the DME supplier the

least and the fully data capable APAPs the most so they would prefer to

provide a bare bone compliance data only CPAP. BUT they have contracted

for a set price for ANY HCPCS e0601. IF they want your business bad

enough and you are diplomatic but FIRM they will provide you w/a fully

data capable CPAP.

Also ask them about their mask exchange policy. Its better to have a

local DME supplier w/a lenient mask exchange policy if possible. Be aware

that Resmed, Respironics and Fisher & Paykel will provide FREE to the

local DME supplier most any of their masks that a patient has tried and

been unsuccessful with IF the DME supplier will fill out the necessary

form and return form and mask to the manufacturer W/IN 30 DAYS.

DO NOT SIGN ANYTHING UNTIL you insist and the local DME supplier SHOWS

YOU on the LCD screen that access to the data has been turned on. You

should be able to see at least Pressure, Leak and AI, assuming it is a

brand new machine it will say No Data or a 0 or 0's but at least the ID

of Pressure, Leak, etc. will show on the LCD screen.

If you have called your insurance and know that you have the option of

more than this one local DME supplier you are NOT committed to HAVING to

go w/this particular DME supplier just because that is where the sleep

lab sent your equipment order (script). You can call the sleep lab and

have them send the order (script) to another of your choosing if this one

won't work with you to provide what you want (w/in reason, of

course).

Now, assuming that you see your doc before you get the prescription for a

machine...

This is actually GOOD. Don't expect your doctor to be familiar w/the

various brands and models of xPAPs available. Research now, do your study

results, find out what your insurance covers. You have time to research

the various xPAPs online now at cpap.com before your appointment. Decide

which ones interest you NOW and print out a comparison of them (cpap.com

allows you to do that). Take that printout w/you to the doctor and insist

that the two of you come to a MUTUAL agreement on which xPAP he will

order for you. Be diplomatic but be firm. YOU are the one who will be

sleeping w/this device for the next 5 years AND YOU are the one PAYING

for it, makes no difference whether via insurance or out of

pocket.

Bear in mind, that there MAY be the possibility that your doctor will

have determined from your evaluation and titration studies they you will

need more than just a CPAP, that you will need one of the more

specialized xPAPs such as a VPAP or BPAP, etc. Unlikely, but be prepared

for that by having done a comparison on them too so you have an idea of

what you prefer.

Understand too, that should your doctor suggest you need a VPAP or BPAP,

most insurance companies will insist that you " fail " CPAP

therapy BEFORE they will pay for a VPAP/BPAP except under very strict,

complicit specifications so don't be too rigid. The most important thing

is that whatever you get is FULLY DATA CAPABLE.

<g> Amazingly, my insurance did not insist on my

" failing " CPAP before they got me my Bipap because I

demonstrated in the sleep lab that I needed two pressures. I did fine

with a higher pressure on inhalation, but needed the lighter pressure to

exhale.

You'll want to have your doctor write the prescription for YOUR machine,

not like the original script I had, which read " CPAP or BiPAP as

Recommended... "

If your equipment order (script) will be for " just " a straight

CPAP and not one of the more sophisticated bi-levels (Bi-PAP) or SV, etc.

most doctors write a fairly genetic script (see above) and then most DMEs

will take advantage and provide you with a bare-bones CPAP. They do this

because a bare bones machine costs them less, and that way, they have

more profit.

I emphatically suggest that you ask your doctor to write a very explicit

equipment order so that you get EXACTLY what you want and really need.

The following are some suggested orders (not to recommend one machine

over the other, just to give you and your doctor an idea).

1] Respironics REMstar M Series Pro w/C-Flex (w/heated humidifer if you

prefer)

2] Pressure ---- cms (whatever your pressure is)

3] C-flex setting 3 (or whatever your doctor suggests)

4] Ramp off (unless you prefer it on)

5] Show AHI/Leak feature On

6] Fisher & Paykel HC 150 heated humidifier (unless you prefer the

integrated heated humidifer. If so just add " w/heated humidifier to

the REMstar Pro "

7] Nasal mask, Full Face mask, or Nasal Pillows mask of patient's choice.

I strongly recommend, if you do best with a nasal mask or nasal pillows,

that you have your doctor include a basic full-face mask, like the

Zzz-mask in the script order. Nasal and nasal pillows are great for

regular sleeping, but if you get a cold or allergies, you NEED a

full-face.

1] Resmed S8 Elite w/EPR (w/heated humidifer if you prefer)

2] Pressure ---- cms (whatever your pressure is)

3] EPR setting 3 (or whatever your doctor suggests)

4] Ramp off (unless you prefer it on)

5] Efficacy & Usage Data access

6] Fisher & Paykel HC 150 heated humidifier (unless you prefer the

integrated heated humidifer. If so just add " w/heated humidifier to

the Resmed S8 Elite)

7] Nasal mask, Full Face mask, or Nasal Pillows mask of patient's choice.

1] Respironics REMstar M Series Auto w/A-Flex (w/heated humidifer if you

prefer)

2a] Minimum pressure (whatever your doctor has determined)

2b] Maximum pressure (whatever your doctor has determined)

3] A-Flex setting 3 (or whatever your doctor suggests)

4] Ramp off (unless you prefer it on)

5] Show AHI/Leak feature On

6] Fisher & Paykel HC 150 heated humidifier (unless you prefer the

integrated heated humidifer. If so just add " w/heated humidifier to

the REMstar Auto w/A-Flex "

7] Nasal mask, Full Face mask, or Nasal Pillows mask of patient's choice.

1] ResMed S8 AutoSet Vantage (w/heated humidifer if you prefer)

2a] Minimum pressure (whatever your doctor has determined)

2b] Maximum pressure (whatever your doctor has determined)

3] EPR setting 3 (or whatever your doctor suggests)

4] Ramp off (unless you prefer it on)

5] Efficacy & Usage Data access

6] Fisher & Paykel HC 150 heated humidifier (unless you prefer the

integrated heated humidifer. If so just add " w/heated humidifier to

the REMstar Auto w/A-Flex "

7] Nasal mask, Full Face mask, or Nasal Pillows mask of patient's choice.

You will notice the similarities to each suggestion.

1] Exact brand and model of machine

2] Scripted pressure (the autoPAPs have a pressure range rather than a

set pressure)

3] Scripted amount for lower pressure at exhalation

4] Starts w/4 cms of pressure and ramps up to your set pressure after you

get to sleep

5] Allows you to access your nightly data via the LCD screen

6] While the integrated humidifiers are most convenient for travel and

take up less space on your nightstand, in really dry situations sometimes

they can't provide as much humidity as you might need or want. For many

the integrated humidifiers are more than satisfactory.

7] This ensures that you can try several masks, including a Full Face

mask (sometimes they insist on a script specifiying full face if the

script just says mask, or will only provide the exact mask mentioned in

the equipment order).

To the best of my knowledge the only other fully data capable CPAPs (as

of January 2008) are the Puritan Bennet GoodKnight 420E autoPAP and one

other Puritan Bennet GoodKnight straight CPAP. I'm not sure of the

correct model. Nor do I know the specifics for those Puritan Bennet's or

I would have included them. Those who have the 420E really like them so

hopefully further information can be included by someone who knows the

Puritan Bennet devices.

> I do hope, dear Jodi, that

you don't insist on having all of them.

What do you mean, like that my body has more ailments or like insisting

on the polysonogram. Sorry, I'm a bit dense I only slept 2 hours last

night My gut is doing amazingly better though!! YAY! Considering going

on vacation but now with this sleep stuff- not sure. How long does this

whole process of morphing into a sundown klingon take?

Congrats on the gut doing better!

Heh. BTW, two masks I can seriously recommend to you are the Respironics

Comfortlite 2 with either the nasal mask or the nasal pillows, and the

Aeiomed Headrest. I do NOT recommend the Swift Light because Resmed

has recently cheapened the making of the nasal pillows (out sourced it to

China) and many Swift Light users report that the pillows do not give

good therapy.

You mean a fully data capable

machine for the test or like for home?

You want a fully data-capable machine for at home.

Here's why:

http://www.cpaptalk.com/viewtopic.php?f=1 & t=40856 & p=357821 & hilit=+Three+nights#p357821

This post on CPAPTalk has three of my charts in it. With a fully data

capable machine, you can get charts akin to this -- see when you had

different events, AND check leak rates. If your mask isn't sealing

properly, or if you breathe through your mouth, you'll have a high leak

rate, which means your therapy air is going away and not doing you

much good.

BTW, a whole whack of the advice on dealing with doctors and what to put

in prescriptions comes from a very wise lady who goes by the name of

" Slinky, " on CPAPTalk. I just copied and pasted it from where I

saved it, except for the stuff that applied to me personally.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Marilyn,

Thanks so much for posting this comprehensive information about the XPaps. The pulmonologist who read the sleep study and diagnosed my DH never talked about any of this and after a 6 month follow-up, told him that since he was so compliant with using his BiPap, just come back if you have problems. I've always been suspicious there should be a lot more feedback on how he was doing with the BiPap.

I will be following up with our insurance company and finding out about getting him a new machine with the full data capability. I would surely like to keep him around a long time !

Sue R

PS He was turned down for more life insurance and since sleep apnea was his only medical issue, we think that's why.

[Guest guest]

re: dental device

guessing you're grinding your teeth - do you have TMJ???

eileen

>

> So I got the results for my sleep study.

> I don't have the report myself.. still waiting to get it.

> My doc called me and even with the perfect night sleep at the center they

detected numerous abnormalities that I need to go back for a CPAP study. They

also mentioned that I may need some kind of dental device?

>

> All of this is wildly confusing.

>

> Jodi

>

[Guest guest]

At 06:44 PM 12/4/2009, you wrote:

Thanks so much for posting this

comprehensive information about the XPaps. The pulmonologist who

read the sleep study and diagnosed my DH never talked about any of this

and after a 6 month follow-up, told him that since he was so compliant

with using his BiPap, just come back if you have problems. I've

always been suspicious there should be a lot more feedback on how he was

doing with the BiPap.

I will be following up with our insurance company and finding out about

getting him a new machine with the full data capability. I would

surely like to keep him around a long time !

Sue,

Well, it's technically off topic for this list, but since the folks over

at CPAPTalk.Com don't smack me about the head and ears TOO hard for going

on about SCD whenever the topic of diet comes up, I figure apnea -- which

is incredibly common these days -- can be an occasional OT but possibly

related, just as LDN is.

One reason I feel this way is because so many of us who come to SCD

frequently feel cheated by the medical establishment where our gut issues

are concerned. I know I did. (For years I was told, " Just take

a little lomotil if it bothers you.... " ) SCD put ME in charge of MY

health.

I realized very quickly that CPAP therapy is as bad or worse than the

treatment of our guts. This is not to say that there are not good docs

and caring practitioners in both fields out there -- there are. Still,

I've learned an amazing amount from the wonderful folks over at

CPAPTalk.Com, and I continue to learn.

For instance, I was titrated at 10 and 14 -- and my machine (which is a

very fancy Bipap) was set at EPAP 10, MinIpap 10, and MaxIpap 14. I

couldn't breathe out against the pressure. Reason? In the lab,

apparently, I was having pain issues (still related to my surgery) and

was partly breathing through my mouth. This meant to get a specific

pressure to keep my throat clear, the actual pressure had to be higher.

But when the surgery pain issues were resolved, I wasn't sleeping with my

mouth open, and the higher pressure was actually causing central apneas.

If I hadn't had the fully data capable machine, and hadn't been

monitoring my leak rates and apneas and all, I wouldn't have realized the

issues. As it was, I figured out, within 10 days, that my EPAP was too

high. (There was a REASON I was on a Bipap -- I couldn't breathe out

against the same pressure I inhaled with!) I called the RT and explained

my conclusions; she agreed; my prescription was changed, and I've been

just fine since.

Without the data -- which, btw, parallels keeping a food data for SCD! --

I could have gone months or years with ineffective treatment.

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

[Guest guest]

Eileen,

Apparently one of the ways they try and treat sleep apnea is with a dental

device.

I grind my teeth but I don't have TMJ. That would be the least of my issues at

this point.

Jodi

> >

> > So I got the results for my sleep study.

> > I don't have the report myself.. still waiting to get it.

> > My doc called me and even with the perfect night sleep at the center they

detected numerous abnormalities that I need to go back for a CPAP study. They

also mentioned that I may need some kind of dental device?

> >

> > All of this is wildly confusing.

> >

> > Jodi

> >

>

[Guest guest]

it is the least - lol i have it and don't think about it unless i'm having my

steak and every once in a while it bugs me - good luck!!!!!!

eileen

> > >

> > > So I got the results for my sleep study.

> > > I don't have the report myself.. still waiting to get it.

> > > My doc called me and even with the perfect night sleep at the center they

detected numerous abnormalities that I need to go back for a CPAP study. They

also mentioned that I may need some kind of dental device?

> > >

> > > All of this is wildly confusing.

> > >

> > > Jodi

> > >

> >

>