Posted by: Jan | May 16, 2010

What if Fish Designed Beds???

So, what if fish designed beds? 

What do you think it would look like?  What do you think it would feel like?

The reason I ask, is that I think that people who design CPAP interfaces–masks especially and machines to some degree–probably don’t use CPAPs.  They think they know what might work, but they really have no idea.  Having people who don’t use CPAP design CPAP machines and interfaces makes about as much sense as asking fish–who never sleep lying down–to design beds. 

What got me thinking about fish designing beds was a series of videos posted about here:  http://www.cpaptalk.com/viewtopic/t52138/Vids-of-Dr-David-M-Rapoport-at-Manhattan-AWAKE-5510.html#p480978.  Dr. David Rappaport seems like a very smart, nice guy.  He works with Fisher Paykel to help design CPAP machines.  He clearly doesn’t use CPAP.

FP, Dr. Rappaport, and other CPAP designers and researchers are clearly concerned about a major problem–CPAP therapy is almost 100% effective when used, but the compliance rate with CPAP is less than 50%.  So fine groups of reasearchers are doing what they can to figure out why the compliance rate is so low, and what to do about it. 

CPAP machines can make or break CPAP therapy.  They need to provide optimum pressure to keep your airway open.  As a general rule, CPAP machines do that very well, but they don’t always do their job comfortably.  That is–the way the machines deliver pressure can make the user uncomfortable.  For instance, straight CPAP machines deliver a steady and constant pressure.  That’s great for getting the air in, but I can tell you it can be uncomfortable to breathe out against a steady pressure.  Particularly if you have asthma as I do–it’s a lot of work to breathe out against a pressure setting of 13 or 14 cms of H2O (CPAP pressure is measured in centimeters of water displaced by the pressure). 

So they invented CPAP machines that drop the pressure when you exhale, so it’s easier to breathe out.  For certain brands of machines this is called “EPR” (Exhalation Pressure Relief), Phillips Respironics who makes my machine calles it “flex”.  Another thing that’s uncomfortable is to have 12 or more cm’s of H2O pressure blasting your face when you are wide awake and clearly breathing on your own.  So manufacturers have come up with automatic features, that start you off at a low pressure when awake, and then increase the pressure as your airway resistance increases, then lower it again as your airway resistance decreases.  This is more comfortable.

But, to Dr. Rappaport and other researcher’s surprise, features like EPR and flex do NOT increase CPAP compliance.  Their studies sounded a bit small, and, according to Dr. Rappaport, “patients are unable to articulate what it is that makes them uncomfortable” (they should have asked ME!), so they have to guess.  And they guessed . . .

WRONG!  The latest theory is that there’s no reason to have CPAP on at all if you are awake.  So they are trying to develop a sensor that will determine when you are awake, and either drastically dial back the CPAP pressure, or–Dr. Rappaport’s preference–turn it off altogether.  That, they have decided, will increase patient comfort and compliance with CPAP.

HUH????????????

Ever try breathing in a CPAP mask with little or no air coming in?  It’s possible.  Some masks have “fresh air” valves that let fresh air in.  At the very least, you can breathe in from air that comes back in the vent holes when air isn’t going out.  But it’s not very pleasant.  It feels like you are suffocating, even though you aren’t.  And a lot of us with OSA have at least a touch of anxiety and claustrophobia (probably caused by the OSA in the first place).  Even when my CPAP is on, I’m not very comfortable at 4 cm’s, which is the lowest possible setting.  I have my minimum pressure set at 9 cm’s for comfort.  Below 9, I feel like I’m not getting enough air.  And Dr. Rappaport and friends want the CPAP to stop blowing at all if I’m awake (which is when I’d notice it–hello!)???

I watched all of the available segments of his presentation, and throughout it all, I wanted to scream one thing at him:

IT’S THE MASK, STUPID!!!!!!!!!!!!!!!!!

Clearly, this fish has never slept in the bed of a person with OSA. 

Compliance with CPAP has a little to do with the machine.  If the machine is not set correctly for your needs and comfort, if it’s too noisy, or the humidifier isn’t working right, you might not like and use it.  But for the most part, I think the machine manufacturers have those issues solved.  Whether you use CPAP, APAP, SVAP, or BiVAP, as long as it’s the proper delivery system and setting for you and the machine doesn’t drive you nuts with extraenous noise, it’s going to be OK. 

But then they strap this chunk of plastic on your face.  The chunk must seal for the CPAP machine to work.  The chunk must vent CO2 properly.  It’s heavy, it’s hard, it hurts, it’s too tight, or it’s too lose and leaks.  It makes you feel claustrophobic.  You can’t open your mouth or talk or scratch your nose.  People look at you in this contraption and run screaming from the room.  The vented air blows on your partner.  The mask makes noise.  It’s AWFUL!!!!!!!!!!!!!!  And they want you to wear this every time you sleep, every night, for the rest of your life. 

When is see the way masks are designed, when I try them and I hear other’s experiences with them, I can’t but help think that they were desinged by people who don’t wear CPAP masks and use them every night of their lives.  The bottom line is that masks look terrible, they are uncomfortable and scary (claustrophobia), they hurt and leak and make noise and feel awful, they interrupt the sleep you are supposed to be improving on CPAP and they make you miserable. 

THAT, dear researchers, is why compliance stinks.  Make a mask or series of masks that fit great over a broad percentage of the population, don’t leak, aren’t heavy, don’t make you look like an alien from another galaxy, don’t cut you off from senstions of the world,  and are incredibly comfortable in any sleeping position, and complaince will increase. 

Until that day, don’t waste your time tweakiing CPAP machines to make us feel like we are dying!!!!

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Responses

  1. AMEN!

    You have addressed a thing I have been wondering about lately: how many people who are actively involved in designing and making my CPAP products actually use those products? My conclusion, with no research at all, is Not Many.

    There is a lot of cleverness, even ingenuity, in the designs for face masks, but it’s like cell phones – so far we have lots of bells and whistles that don’t address the real problems that prevent compliance.

  2. Thanks for commenting, Gail (I love feedback).

    I wish someone had challenged Dr. Rappaport to spend a month of nights on CPAP–I bet that would give him a fresh perspective on what affects compliance–especially with his goatee and moustache ;o)

  3. “especially with his goatee and moustache ;o)”
    LOLOL

    I *have* heard that when a doctor has to stay in the hospital, procedures get changed.

    No reason to think mask design would be different.

  4. You are 100% correct!!! I wake up 2 – 5 times a night adjusting my nasal mask and unless I’m so sleepy I fall asleep immediately, I spend 20 minutes adjusting and readjusting the mask. I wake up with a sweaty face and then just take it off about 5 a.m. and go back to sleep.

    • Try a Padacheek mask liner (www.padacheek.com). They really help with the sweaty face problem and leaking.


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