a quadriplegic's questions about cpap

My doc's adamant I need CPAP and sounds reasonable. I lack the subjective symptoms but my sleeping-oxygen level is way down. I'm often a mouth-breather, so the full mask seems the likeliest treatment. I used it at my sleep study Monday night.

I'm a quadriplegic, not as badly paralyzed as Christopher Reeves was, but I'm not real good with my hands. When I'm helped to bed, I'll have the mask put on. But I know there are nights, especially as I'm first using the mask, when I'll want to take it off--will, in fact, take it off in spite of my wanting to keep it on and prove I can. I don't think I'll then be able to get it back on. Am I wrong? And has anyone any physical or emotional suggestion?

Hi, coach - I think it might be possible to rig up some kind of device that could be manipulated with your mouth or a closed hand if you have some shoulder or forearm movement where you possibly could pull the mask on over your head. Some of the pillow/prong type systems come to mind there. However, if you are certain you need a full face mask, and if that seemed to work well for you, those probably would require some fine motor control to work the clips and fasteners. If you are concerned about being able to replace the mask once removed, you should be able to work with your service provider to find something that perhaps could be pulled on without working the fasteners (tricky, but perhaps with some creative problem-solving it could be done). Ultimately, if the mask is comfortable you will be less likely to remove it. However, some kind of assistive device might be rigged up to help you reposition it on your own. If your service provider is unable or unwilling to do that perhaps you can get someone with a rehab background to help you solve this problem. Just an opinion - perhaps someone else will have better ideas. Good luck with your therapy!

I think the respironics Comfort Light mask is proabably the easiest masks I have used as far as slipping it off and on.. almost as easy as a baseball hat. But with any mask I have worn the trick in getting a good skill may involve some fine motor skills. I cannot Imagine what it would be like, but I am sure there is a solution for you.

A far out suggestion....could you attach it to a helmet?

Hi,
I have made a skull-cap (snoopy style flyers helmet) out of velcro receiving (Unbroken Loop Fabric) for a friend who didn't like strapy headgear.

If you think this might be easier for you to manage, please post your contact information and I would be happy to make one for you at no charge.

Liz

That's a fabulous idea. And what a nice gesture, Liz! I can imagine something like that being of great use to a lot of people who have difficulty manipulating all the little clips and doodads. How nice of you!

I would not be concerned as much with putting it on but how to take it off in case of an emergency, especially with a Full Face Mask. Most of them have a quick release of some sort just for that reason, but if you don't have the dexterity and/or strength, that could be a major hazard. If you could use a nasal mask it wouldn't be as much of a concern- if something goes wrong, you can always breath through your mouth. Not everyone who is a mouth breather continues to be, once on xPAP- so don't rule out nasal masks completely. Another thought would be to try an oracle- it is a mouth mask only...I don't have any personal experience with it, but there are a few people who have tried it who might be able to help. Also there is the "No Mask" mask from that company that advertises on the radio...can't think of it right now, but someone should be able to come up with the name. It isn't something I've heard many people having success with but the fact it is held in place with your mouth could be very beneficial in your situation.

Has the paralyzation affected your breathing at all?- not knowing the level of your injury and my rehab classes were I was tested on that type of stuff were way too many years ago... You may end up needing a BiPAP instead of a CPAP- just something to think about. Besides having the lower pressure on exhale, some BiPAPs also have alarms if the power goes off, if the machine malefactions, etc. I don't know if all of them do, but the Respironics Synchrony does.

Hi - this is really important. Are you sure that your low oxygen levels are because of sleep apnea? You said you are a quadriplegic - are your breathing muscles involved at all? It's possible that they are and you might not be aware of it. Your body relaxes during sleep and if your respiratory muscles aren't strong, they become even less effective and your oxygen levels can drop. This is different from sleep apnea but a lot of doctors are used to seeing people with apnea and don't seem to understand that this problem needs to be treated differently. I say this from personal experience. I am 18 and I have a neuromuscular condition. About two years ago I started to experience fatigue and morning headaches, like a lot of the people describe here, only it wasn't from apnea - it was from retaining CO2 in my sleep because of shallow breathing. I started using a BiPAP and I use it with a very high IPAP and a very low EPAP. This helps me to rest my breathing muscles and get deep breaths at night. When I went in for my sleep studies, the sleep techs could not seem to understand that I was not a typical OSA patient. This is very, very dangerous - if your problem is based on weak muscles and not airway obstruction, regular CPAP will make your breathing worse. Forgive me if you actually do have obstructive apnea. I want to be adamant about this though because I have seen a lot of neuromuscular patients treated improperly by doctors who don't know any better. Good luck and feel better!!! If your problem is shallow breathing, BiPAP on the proper settings (high IPAP, very low EPAP) should help a lot.

All,

God, what a fine collection of answers.

Jess, You address the specific diagnosis problems about which I was concerned. I just wasn't confident that my sleep technician got it that my quadriplegia complicates diagnosis and I am only first-meeting my pulmonologist later today. You have given me the vocabulary I need to cross-examine him. I admit I was hoping to avoid any PAP, lack most all the annoying symptoms--but have terrible overnight oxymetry readings. Sleep apnea diagnoses have become so in that I thought I might be a high-functioning quad with lousy but normal-for-a-quad-and-not-in-need-of-therapy readings. Now--having read a couple of Medline paragraphs describing studies, mostly in Australia for some reason--I'm afraid I think probably most long-term quads are likely to need PAP and should have oxymetry done every five years whether they think they're symptomatic or not.

Christine, I can get the damned thing off, wouldn't have even tried it if I couldn't. I'm a C-6, -7 so have good biceps and triceps but my finger movement comes from tendon transplants. My hands are useful but I type with a peg.

The Rest, Thanks for yr input. I'm seeing my oxygen rep Wednesday and am printing out yr ideas to use as a basis for my questions. The rep sounds willing to improvise. Again, this is a great board. Thank you all.

Coach, here ya go:



Pantyhose tights are as handy as duct tape! I tried this out a little while ago. It works.

The headband style straps are not fastened to the mask. Just slide the homemade straps into place. No clips to bother with. The whole thing can be pushed aside (or up) easily if you ever need to get it away from your mouth fast.

Rested,

Smooth. It looks simple and like it will work. You've worked miracles on my expectations already. I see the rep Wednesday, will call him tomorrow and tell him to access this thread for a look at it before he comes. Now I'm off to meet my pulmonologist for the first time, a story about which I'll not bother you with details. Thanks.

Coach,

I know how tough it is to realize you have issues with your breathing. Believe me – I was 16 when it started. I’d had a neuromuscular condition for my entire life, but I had always been stable and had never expected to have breathing problems. I had a lot of trouble adjusting to the bipap. In fact, I am still struggling. I have way more experience with this than I ever wanted to have so if you have any more questions feel free to post them here or email me at jessjcb@hotmail.com. There is also a Yahoo group called NIVusers that is for people who use bipaps and the like because of neuromuscular issues.

I also wanted to direct you to a website that has a lot of very valuable info on non-invasive ventilation (that is basically what you and I are doing when we use the bipap to help our muscles). Dr. Bach is a doctor in New Jersey who has a huge amount of experience in this area. His site is http://www.doctorbach.com. I don’t know what you discussed with your pulmonologist today, but I also want to recommend that you get a full set of pulmonary function tests done in addition to overnight oximetry. This will tell you how much you are able to expand your lungs and how strongly you are able to cough. People like you and I, with respiratory muscle issues, are often fine as long as we are healthy, but if we get sick we have trouble coughing up all of the secretions in our lungs and that makes us prone to pneumonia. There are several ways to deal with this problem and prevent pneumonia before it happens – Dr. Bach explains some of them on his site.

One other thing – never ever let a doctor give you straight oxygen. When I first started having breathing problems, my pulmonologist saw that my O2 sats were low and so he prescribed oxygen. BAD IDEA. Dr. Bach explains this on his site. If your breathing is already shallow, breathing extra O2 will only compound the problem. When I tried to sleep with oxygen, I woke up feeling dazed and horrible. O2 shuts off your brain’s drive to breathe and makes you retain even more CO2. Don’t let them give you oxygen!!

Anyway. I really don’t want to freak you out. I know when I started hearing about all this stuff it was really scary. You will figure it out. Your lung function may be relatively good and you will probably do very well with a bipap at night. I just wanted to make sure that you are aware of all these things, because I wasn’t and neither were most of my doctors. You know what they say…better safe than sorry. Again – good luck!!!

Jess

Jess,

I saw the doc today and he seems knowledgable, has worked with more quads than I expected. I'm mixed, have both obstructive and muscular apnea. I'm starting CPAP with some oxygen probably Wednesday (if I'd read your post before I saw him I'd have quizzed him differently about O2; if I wake up feeling way off, I'll inquire immediately--& see below). The doc today showed me a chart of my recent sleep study. CPAP alone left me having too many episodes during REM. When some oxygen was added there were significantly fewer. I'll try to run what you said about oxygen causing extra retention of CO2 by the provider rep I'll see Wednesday. He and my doc are close and he's a respiratory therapist himself. For the past year + I've been doing oxygen directly through a nasal canula but my oxymetry still was lousy. The doc who prescribed the O2 thought I had Stokes-Cheyne syndrome (I think, this is all new to me, so even my vocabulary is approximate), not apnea, but as my doc today explained apnea and how it's defined, it's apnea with which I'm dealing. In 6 weeks the plan is to do overnight oxymetry, and today's doc thought it likely I'd need BiPAP. I asked why not BiPAP now, but didn't know enough to retain what he said. Too, I did pulmonary function tests as recently as last year and in the next few months expect to do them again.

Thanks for the continued feedback and the web sites. I guess I should add a little more detail, too. For a guy with lousy lung function, my lung function is excellent. I know exactly what you mean about chest colds and pneumonia, have had pneumonia unnumbered times; it's how my colds often as not end. For no reason anyone has suggested, by the way, the pneumonia vaccine seems to keep me from getting colds, if not 100% at least to a most remarkable degree. Without the vaccine I was getting one or two colds a year. I've had it three times now and in the nine years after think I had only one (mild--no pneumonia) cold!

Don't worry about scaring me. As I'm sure you know, it's important for those of us with multiple issues to learn as much as we can and use the docs as sources and allies, not treat them as infallible guides. I'm pretty good at it, but boulder ignorant about this stuff, have learned more in the past 24 hours than the sum of all I knew before.

Since it sounds like you are going to be on CPAP- at least to start- you may want to have some sort of alarm system if the power goes out. There are alarm systems you can purchase, but they can be hard to find. An easier solution would be a USP, like they use for computers- most have an audible alarm when the power goes out but you can turn the alarm off on some so the backup power is provided seamlessly. Its not usually such a problem with nasal masks- it can be a more of an issue with full face masks, especially when you have other medical problems that complicate matters.

The Chenye-Stokes is a form of CSA (Central Sleep Apnea) that are usually associated with heart disorders. CPAP & BiPAP are often used to treat it and ResMed is coming out with a specialized auto-BiPAP ST (AutoSet CS) to treat it...not FDA aproved yet.

It will be interesting to see how the CPAP does- you'll have to let us know how it goes and how the overnight oxymetry does.

As an occupational therapist I think you all gave some exxcellent ideas for adapting masks. Velcro can work wonders. However, it sounds like there is a lot of diagnosing going on which makes me feel uncomfortable unless you have a medical degree. Your rehab MD probably knows whether or not you need O2. Good luck.