Help Needed with Nasal Pillows Mask Selection

Slinky · Post by **Slinky** » Mon Feb 11, 2008 6:14 pm

Jeff, one thing is for sure: when you do find a replacement for 'old faithful' you really need to carefully and lovingly store and save that "antique"!!!! Seriously!!! And forever protect those pictures of it too! With their captions/explanations.

Good luck finding a new mask that is comfortable and fits well.

jdetray · Post by **jdetray** » Mon Feb 11, 2008 6:32 pm

Babs -

It's actually very comfortable, especially compared to the off-the-shelf masks of the day. The standard masks of 1988 gave me open sores on my cheeks after just one night. My custom mask was molded to my face, so it fits perfectly.

It doesn't block my mouth, so I can talk while using it. And since it is form-fitted to my face, there is no air blowing around inside. I sleep mostly on my right side and sometimes my back. I route the hose under my left arm.

On the other hand, it's extremely ugly and does look like some sort of medieval torture device!

For my first two years of nighttime ventilation, the small bi-level machines had not yet been invented. So my machine was a Life Products LP-6 volume ventilator, the type then used in hospitals for life support. That machine weighed about 40 pounds, and believe it or not, I used to travel on business trips with it! A couple of years later, Respironics introduced the Bi-PAP S/T, which I have been using ever since.

- Jeff

_________________

CPAPopedia Keywords Contained In This Post (Click For Definition): respironics, hose, Travel

jdetray · Post by **jdetray** » Mon Feb 11, 2008 6:42 pm

Slinky -

Don't worry. I plan to keep "old failthful" around no matter what happens with a new mask. That ugly mask -- and the right doctor -- changed my life.

I was in bad shape before starting nighttime ventilation. Massive "CO2" headaches every morning, falling asleep at work, terrible fatigue all the time -- I had it all.

CPAP did not help. One doctor recommended a trach as the only solution. It took me two years to find a doctor who knew how to apply non-invasive ventilation to my predicament. He's the one who got that wonderful, ugly old mask made for me.

- Jeff

rested gal · Post by **rested gal** » Mon Feb 11, 2008 10:09 pm

jdetray wrote:Hi Sharon -
How did you learn enough about the headrest to know you wanted to try it? Did someone in this forum recommend it to you?

- Jeff

Sharon probably learned a lot about the Headrest mask in these topics:

LINKS to HeadRest nasal pillows mask topics (same mask has had other names: Aeiomed Aura, then Headrest, then Invacare Twilight NP, then back to Headrest again.)
viewtopic.php?t=3098

Jeff, welcome to the board. My gosh, you could write a book about your experiences! Your description of the process when they created a mask for you was very interesting.

The Headrest mask Sharon likes has been my favorite mask (with some self "customizing") for over two years.

ColoradoDreamer · Post by **ColoradoDreamer** » Mon Feb 11, 2008 11:16 pm

Jeff,
Regarding DMEs and access to ordering masks....

When I asked my DME for the HeadRest they said they did not carry it and then proceeded to rattle off what they did carry. I was insistent that I wanted that mask. They called their HQ and got permission to purchase it. Don't know if this works with all DMEs but it is worth a shot insisting for what you want and not what they happen to have on hand.

It does look like you are due for an upgrade. Is that the Activa prototype?

ozij · Post by **ozij** » Mon Feb 11, 2008 11:43 pm

Hi Jeff,
Another vote for the Headrest.

And since you're used to sleeping with the hose beneath your arm, you may find the Swift II convenient as well.

Most of us Headrest users have gotten used to having the hose routed from above.

With the amount of soft silicone in "old faithful" you probably haven't run into much rainout. Be prepared for that new experience with the Headrest. It worse on lower pressures - and my solutions are:

A heated hose (http://www.sleepzone.com.au)
An additional cover on the heated hose
Finger gauze (2-3 layers) on the mask's tube.

It worth it. I've used the mask both with the rubber band trick and "decapitated" - ever since decapitating it (last summer) I haven't returned to my Breeze.

Whichever mask you use, make sure to soak all its soak-able parts in warm soapy water for 30-60 minutes before the first use - that will keep you from having an allergic skin response to production residue that may remain on some masks.

cpap.com has a mask fitting feature, which tells how to measure your face and which mask is worth trying base on those measurements - take a look at that too. Keep in mind the Headrest comes with an M and and an L seal, but an XL exists a well, and is better for some people.

I need an M with the headgear, but an L when the mask is decapitated.... an angle thing, I guess.
O.

jdetray · Post by **jdetray** » Mon Feb 11, 2008 11:50 pm

Rested and Dreamer -

Thanks for the information and links. My DME is a small local company, which means I get good, personal attention. But they don't have much of anything on hand, so it has to be ordered.

I seem to be getting a lot of recommendations for the HeadRest, but it's quite difficult to know what will be best for me. I'd like to hear from anyone with strong feelings, pro or con, about various other nasal masks.

As far as I know, my custom mask is not a prototype for anything. It was made by a dental reconstructive surgeon in Boston who worked up the design in cooperation with my (then) pulmonary doc.

The dental surgeon applied the same techniques and materials he used for reconstructing shattered jaws and broken facial bones. I don't think he made very many of the masks, because it was quite a labor-intensive process, with each mask being hand-made from scratch.

I found it very interesting to be involved in such an unusual project.

My pulmonary doc went on to head the Dept. of Medicine at one of Boston's largest hospitals. He is a big proponent of non-invasive ventilation and believes doctors are too quick to trach patients when non-invasive techniques would do the job. Once, when he was giving a medical lecture on this topic, he brought me in as "Exhibit A" to show what can be accomplished with non-invasive ventilation. He's easily the most impressive doctor I've ever been around, and I've been around a lot of them.

- Jeff

ozij · Post by **ozij** » Mon Feb 11, 2008 11:55 pm

Jeff, what you're looking for is opinions on a Nasal Pillows mask - you can edit your subject line to get more of the info you want.

A nasal mask is actually what you don't want.

O.

jdetray · Post by **jdetray** » Mon Feb 11, 2008 11:58 pm

ozij -

Am I correct to assume that "rainout" refers to condensation forming in the circuit and getting into the mask? You're right -- that has never been a problem with "old failthful."

I must find and read all the tips about the HeadRest. I haven't been on this forum very much and don't really know my way around, yet. I've been pretty much on my own for 20 years as far as the world of ventilation is concerned. What I don't know would fill a book.

- Jeff

ozij · Post by **ozij** » Tue Feb 12, 2008 12:14 am

jdetray wrote:ozij -

Am I correct to assume that "rainout" refers to condensation forming in the circuit and getting into the mask? You're right -- that has never been a problem with "old failthful."

Yes. And the Headrest is more prone to it than others.

I must find and read all the tips about the HeadRest. I haven't been on this forum very much and don't really know my way around, yet.

That's how most of us started out here - that's OK.

I've been pretty much on my own for 20 years as far as the world of ventilation is concerned. What I don't know would fill a book.

Well, you're not on your own any longer - unless you choose to.
Welcome - and happy reading.

O.

sharon1965 · Post by **sharon1965** » Tue Feb 12, 2008 6:43 am

jdetray wrote:ozij -

Am I correct to assume that "rainout" refers to condensation forming in the circuit and getting into the mask? You're right -- that has never been a problem with "old failthful."

I must find and read all the tips about the HeadRest. I haven't been on this forum very much and don't really know my way around, yet. I've been pretty much on my own for 20 years as far as the world of ventilation is concerned. What I don't know would fill a book. - Jeff

jeff,
as usual, the kind and lovely rested gal has provided you with awesome links in her post (i know RG, i'm lazy and just directed jeff to the collected wisdom ) ...just click on them and you'll find a plethora of posts and fixes for this interface

for rainout, i use a hosecover, keep my cpap a little lower than my bed, use my heated humidifier as a passover (ie: off) except in the winter and use plenty of nasal lubricant to make up for the hh being off

as for other choices, the folks that babette has converted to the NAII really love that one, too

good luck...you've got some reading to do, rested gal has given you homework

sharon

boynedoc · Post by **boynedoc** » Tue Feb 12, 2008 10:23 am

If you are looking at nasal pillow masks, don't overlook the Opus 360. Its the only mask I've used, but I've been in this arena for just over a month.

Thats alot different than you for certain. I use a pressure of 16 and once adjusted correctly is pretty darn stable, haven't had much of any leak issues.

Sleepy Dog Lover · Post by **Sleepy Dog Lover** » Tue Feb 12, 2008 10:44 pm

Jeff, welcome to you and your very ugly but durable mask to the forum. When I first got my CPAP, I went to my DME and they let me try on and try at pressure every mask they had. It was wonderful, and that is how I found my headrest, which I absolutely love. Masks are a very individual decision, and not every mask works for every person. Try checking with your DME and see if they will let you do that.

Mask

Additional Comments: Pressure 16 C-Flex setting at 3; Encore Pro 1.8.49; Encore Analyzer