Smallest nasal mask / pillow possible for outsidie use

[Russtafar]

Hello!

UK resident here, male, age 23. Been using the cpap for going on 8 or 10 years (I think, its been a long time), nippy 3+. Use due to reduced lung capacity brought on by multiple lung collapses and a plethora of other spinal conditions (scoliosis, syringomaelia and arnold ciari malformation), and also some sleep apnea to round off the trainwrecck that I am.

Am wheelchair bound. Have never used the cpap whilst going outside but it has come to my attention that my struggling in the chair is due to not getting enough air and not previously what was thought to be muscle deterioration (good news). Am now looking to use it during the day when I am out and about, in conjunction with a Breas Z1, with this I'll be able to control the wheelchair myself and regain some independence which is a fantastic prospect.

Now, I have a full face mask for night times and for when I get particularly tired during the day. Honestly not sure of the make its NHS provided. But as I'm going to be using this new one outside, and as I'm a little self conscious, I'd like some advice on the smallest possible mask. Preferably something clear that doesn't obstruct my mouth too much. I realise theres only so much they can do size wise but just some advice would be appreciated.

Sorry for the medical history but from other posts I've seen here it seems its the more information the better.

Thank-you very much for any help you can offer

[Julie]

Hi, I really urge you to discuss this further with qualified pulm/resp doctors because unfortunately C/Apaps are designed to respond to asleep breathing patterns, not awake ones, and while I don't know if any harm might be done by using it while awake, I also don't know if any benefit would be gained. Have you talked about a small 02 concentrator with them - the kind that e.g. COPD patients use? They only require a thin cannula to your nose vs a mask (of any size).

[tl424]

Hi,
I agree with Julie that this should be discussed further with your MD. However, to answer your question, the Respironics Dreamwear is the most minimalist mask I know.

Here is a link:
https://www.cpap.com/productpage/pr-dre ... -pack.html

Best of luck,
tl

[Russtafar]

Oh no I understand that my breathing specialist already knows all this. He's the one that recommended I use it more to help combat this weakness, to help mee more active. I haven't yet enquired on a mask as I'm looking around first

And thank-you

[Julie]

I would seriously look into the qualifications of your 'specialist' because he's not advising you well. Cpaps are highly unlikely to help you while you're awake... it's the science of them, whether or not the idea sounds good.

Just curious actually, if you already felt you had all the answers, why post here at all? In other words, if you're convinced your specialist absolutely knows and understands what he said, why would you question him?

We may not know all about your other conditions in detail, though a few people here have experienced similar things, but we do know Cpap, what it can and cannot do. You might also want to talk to a (new?) neurologist about it.

[Russtafar]

I'm not questioning him? I'm just looking into a different mask. And he's qualified enough to be the director of one of Londons top respiratory units so I trust his advice

My condition means my lung capacity is around 20% of normal. My breathing is incredibly difficult when I'm doing anything active be that exercising or sitting in my chair upright. Latter predominantly due to the curvature of my spine and a drastically weakened left side. Using the mask helps me regain energy, allowing me to function when I'm not at my best. It means when I'm exercising I can actually breath. It means when I'm standing for the short time I can, I can breath, meaning I can actually use my legs. It means when I'm sitting I can function, my entire focus and energy is not on breathing. This is a highly specialised case, its what I'm guessing is an unorthodox use of a cpap machine. But I know it helps me and I know what doesn't.

Sorry I guess for wasting your time on what I thought was an innocent enough question. Thank-you for the answer though

[rick blaine]

Hi Russtafar,

I live in the UK, and I know a wee bit about the NHS, even after the most recent re-organisation.

If, as you say, your consultant is happy with you using some kind of CPAP during the day, and outside, then he or she is perfectly free to sideways refer you to the sleep service unit at whichever foundation trust hospital you attend for treatment - and even to any other hospital your GP's clinical commissioning group sends people to.

And, as I understand it, he or she may have already done this - where else did you get the machine you are using and the full-face mask?

It seems to me what you are asking is something else: what is the smallest, neatest, least-noticeable mask? And to that question, tl424 has already given you one answer - for a nasal mask. Another small and light nasal mask is the ResMed Swift FX.

For a full-face mask, the lightest and smallest (IMO) is the Resmed Air.

You can buy any of these masks yourself, although UK vendors will need a prescription. (You can download a blank 'scrip form from ResMed's UK website.)

Alternatively, your consultant can ask for you to be seen again by the same sleep service unit which issued you with your current equipment.

If they're at all like the one I go to, here in Gloucestershire, they will have a range of masks in their storage cupboards - including the ResMed Air. And provided your consultant does the right paperwork, prescribing you with (ie, giving you) a second mask should be both possible - and free.

[Grace~~~]

Hi Russtafar ~~~

I am sorry to hear about your physical challenges but it is wonderful that you are overcoming and adapting.

We are SO MUCH MORE than our bodies.

I agree with the poster above that the dreamwear mask might interest you.
Are you too young to remember that cartoon 'The Snorks'?

You'll see the dreamwear mask is vented out the top of your head so you look like a snork and not an elephant.
Masks with the hose in the nose seem to pull on my face even when reclined and sleeping so I imagine it would be more so when sitting and awake?

...but with the dreamwear it could kind of balance on top of your head?
...and your whole view is completely unobstructed.

I hate the feeling of trying to talk with the mask on but your mouth is free and so you could definitely talk
if you wanted. Also, I find that it pulls off and on super easy so there's not as much fiddling with it for quick off/on.

I think there are smaller nasal pillows, but it is really the hose placement being balanced on top of your head that makes me think this is what you are looking for? If you have long enough hair you can make a 'top bun' with your hair and it really stabilizes the hose and straps.

Good Luck!

I'd love to know what mask you decide on and how it works?
Please keep us posted.

[Pugsy]

You might also look at the nasal pillow mask that I use.
See the link in my equipment profile. The ResMed Airfit P10 nasal pillow mask.
Minimal headgear with super easy adjusting for fit and comfort. It is about as next to nothing as I have ever found in terms of nasal pillow masks and I have tried pretty much all of them.

[Russtafar]

Thank-you very much! And I'll most certainly check back with what gets decided. Very excited about this. I've not been outside by myself in over a decade. Craving it.

You might also look at the nasal pillow mask that I use.
See the link in my equipment profile. The ResMed Airfit P10 nasal pillow mask.
Minimal headgear with super easy adjusting for fit and comfort. It is about as next to nothing as I have ever found in terms of nasal pillow masks and I have tried pretty much all of them.

Sleek looking piece of kit!

[brazospearl]

I think it's so exciting that you'll be able to go outside on your own with your new gear. Looking forward to hearing about your adventures.

[chunkyfrog]

I am impressed that your doctor is willing to "think outside of the box",
accommodating your unique situation.
Good for you for advocating for your health and independence.
I agree with the Resmed P10 nasal pillows mask--lightest mask ever!

[HoseCrusher]

The difficulty I see is figuring out a good pressure to use. The xPAP machine is designed to keep your airway open during sleep and things are different while you are awake, and different again while you are doing activities.

The software reports will be useless.

How about this...? When you get set up, put on a pulse oximeter. This will give you something to track while you are out tearing up the town. You can adjust pressure to where you feel good and where you get decent (for you) numbers on your pulse oximeter.

Obviously you are covering new ground so keep a journal to track progress.

[ChicagoGranny]

I would seriously look into the qualifications of your 'specialist' because he's not advising you well. Cpaps are highly unlikely to help you while you're awake... it's the science of them, whether or not the idea sounds good.

Just curious actually, if you already felt you had all the answers, why post here at all? In other words, if you're convinced your specialist absolutely knows and understands what he said, why would you question him?

Wow, you just make some dumb posts, Julie. If he is having problems maintaining airway patency while awake, experimenting with CPAP is a good idea. Why are you trying to run him off?

if you're convinced your specialist absolutely knows and understands what he said, why would you question him?

Duh. He never questioned the doctor. He just asked about small masks. SMH.

[palerider]

I'm not questioning him? I'm just looking into a different mask. And he's qualified enough to be the director of one of Londons top respiratory units so I trust his advice

could just mean he's political, or a good *manager*, not necessarily a good *doctor*.