Posted by: Jan | June 6, 2010

An Embarassment of Pillows

Even though the data showed that my therapy is spot on and sleep apnea is not responsible for my 4:30 a.m. wake up calls, I decided not to cancel my appointment with the sleep lab to talk about this issue.  We agreed that nothing is showing up in the data and I need to pursue other possible causes with my primary care doctor.  But, a few things were accomplished:

1.  I am still waking several mornings a week with a swollen and weepy right eye because of leaks.  The RT suggested I try other masks.  She fit me with an Optilife.  At first it seemed to seal really well, but she wanted to show me the “nose cup” and when she put that on it was a no go.  There was no way to seal that nose cup.  So we put the pillows on again, but this time could not get it to seal.  And I hate the chin thing—you sort of need to have a chin to use it, and I don’t have a chin.  The chin thing ended up riding up below my lower lip like a British soldier’s helmet.  Because she tried it on me, she couldn’t use it again and gave it to me to take home to play with.  Even with tweaking, this just isn’t going to work.  I can’t see how it works for almost anybody?

 2.  Plan B is to have me try the Opus 360, but they didn’t have any samples in the office.  The RT promised to order some and call me when they come in.

3.  Meanwhile, she gave me a handful of size small Swift LT pillows to take home.  Woo Hoo—now I have plenty and don’t have to feel like I must treat them like delicate eggshells anymore.  The advantage was immediately clear.  I took a brand new one to sleep in Friday night and did my usual wash and drip dry thing Saturday morning.  Saturday afternoon I decided to go for a walk, but as I was putting my shoes and socks on I realized I was sleepy (even though I slept almost 10 hours the night before!).  So I just got on the bed, put my old nasal pillow on the headgear, and had a lovely nap, even though the other set of nasal pillows wasn’t completely dry yet. 

 Ordinarily, I would have slept in the recliner in the t.v. room without the cpap (too embarrassing to move it out there with a snotty teenager in the house).  In the privacy of my room I got a nice nap and felt very well when I woke.  I was still tired and ready to go to bed at bedtime and slept well for many hours again (except for a horrible nightmare about my husband getting a head injury!). 

 Looking at my data, I asked about the fact that my pressures often bump against the top limit of 13, even though I’m not having any apparent ill effects from that.  The RT suggested setting the top to 15, though she was concerned I wouldn’t be able to “handle” it.  I told her I’m pretty sure I’d be fine at 15, so we set it there.  I don’t know if it’s making any difference, but I seem to be sleeping a little more comfortably.  It did “blow out” the nasal pillow a little Friday night but I woke just enough to fix the leak and go back to sleep. 

 It’s funny, but having all those extra nasal pillows makes me relax a bit.  I don’t have to worry about getting down to just one terribly leaky pillow that would make me miserable.  As I get new mask sets every three months, I’ll make sure to trade out the two that don’t fit and keep a good stock on hand.  One more step in the “fix it and forget it” direction.

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Responses

  1. The one thing doctors never tend to say is, “I don’t know.” If they only knew how stupid these logical contortions sound! (It’s all in your head. Have you considered anti-depressants? It’s your time of life.)

    I’m glad you have things working out to some extent. I think the beginnings of my treatment are lost to sleep deprivation, or maybe just the mists of time!

    I found that the results of my sleep study are
    1. a recommendation for the new FX mask, and
    2. nothing else.
    So I said (whined, insisted) I wanted a new machine, and the sleep specialists promised to try but said insurance agencies are cracking down on spending and might not help until my old, no-data machine breaks, and cannot be fixed.

    Since I might be responsible for the entire cost anyhow, depending on the deductible, I’m considering how a used machine compares, price-wise, to a new one.

  2. I hear you, Gail!

    Has it been at least 5 years for your machine? If so, then I think you shouldn’t have any trouble getting a new machine IF you can get a good DME to work with you. It all boils down to the paperwork–a good DME will know how to work the system.

    If you are going to have to pay out of pocket anyway, check out the CPAPauction.com site.

    • Will do, thanks!


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