Posted by: Jan | January 8, 2011

Things may get worse before they get better!

One of the common newbie themes on the boards is how bad their sleep is at first.  They may  or may not have perceived a problem with untreated OSA, but when new to the machine and mask, people are acutely aware of waking and discomfort, and perceive their sleep to be much worse than it ever was.    This is a common reason people give up on CPAP therapy–there is a period of sleep deprivation that’s just as severe as having a newborn baby in the house, but without the cute little baby to cuddle and make it all worth the torture.

The normal sleep pattern is composed of cycles of deeper and lighter sleep.  Most people do not come fully awake and aware when those lighter sleep stages occur.  If you have severe OSA, you might wake more frequently in the struggle to breathe.  That’s why OSA sufferers find they have to urinate more frequently during the night–they come awake more fully in those lighter sleep stages than most people, and with that comes awareness of a full bladder.  Many people with OSA are surprised to find  that once the OSA is well-treated, they no longer have to get up at night to urinate.  Their kidneys and bladders haven’t changed, only their level of wakefulness that lets them feel the urge to empty their bladders.

Now, add to this mix a machine that may be noisy and add extra light to the room, a chunk of hard and heavy plastic strapped tightly to your face,  air blowing directly in your face and cold vented air blowing on your body or making noise against the bed clothes, feelings of claustrophobia, etc.  As you come to those lighter stages of arousal during the normal sleep cycle, there are plenty of disturbances here to bring you even further into waking.  So, in the beginning stages of Xpap treatment, you may come awake more frequently and fully than you do without treatment.

Sleep deprivation takes its toll, and tolerance for all these disturbances erodes.  This is why some people starting out on CPAP feel worse instead of better.  It’s not surprising at all.  I think newbies should be warned to expect it–if it doesn’t happen, they are really lucky.

The best advice I can give is HANG IN THERE.  It will get better, but you must give it time.  Not hours or days.  Probably weeks or months.  I know that weeks or months sound unsurvivable, so take it one night at a time or you will be overwhelmed.

Each night when you wake, make a mental note of what’s bothering you.  Each day tackle the biggest bother–is the mask hurting or uncomfortable, is the air blowing too cold or warm, are you mouth breathing, are you leaking, is the noise bothering you?  Pick the worst thing and work on it.

If you work diligently to eliminate the annoyances, you should see your sleep periods begin to lengthen out.  I considered it a victory when I could sleep 4 hours at a stretch instead of 2,  then 6, and then over 8 hours one glorious weekend.

It WILL get better, but it helps to understand that it might get worse first.

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Responses

  1. Janknitz,

    I really appreciate your statement:

    “Sleep deprivation takes its toll, and tolerance for all these disturbances erodes. This is why some people starting out on CPAP feel worse instead of better. It’s not surprising at all. I think newbies should be warned to expect it–if it doesn’t happen, they are really lucky.Sleep deprivation takes its toll, and tolerance for all these disturbances erodes. This is why some people starting out on CPAP feel worse instead of better. It’s not surprising at all. I think newbies should be warned to expect it–if it doesn’t happen, they are really lucky.”

    In my own case, I really was very worried about issues of the CPAP waking me up more frequently than my apnea had (which, from my conscious point of view was “not at all” most nights). And I even tried to bring this up with the doctor. And he poo-poo’d my concerns. And simply told me that I’d feel better in two weeks.

    You know me as robysue on both cpaptalk.com and the forums at http://apneasupport.org/ So you know how long and hard of an adjustment period I’ve been going through.

    I’m still angry at my doctor for not being willing to be up front about the very real possibility of weeks (and months) long sleep deprivation issues while adjusting to therapy. And the anger has fed my insomnia monster ….

  2. I think doctors have NO CLUE what this is like. More than 50% of their patients will give up alltogether, a small number will take to CPAP like ducks to water, and of the remaining group, very few will actually complain to the doctor.

    And, they really don’t care. It’s not their job, and they perceive themselves to be too busy (how doctor that specializes in sleep–especially those that never touch a patient–can be that busy is a bit beyond me, but, whatever) to give a hoot. It’s a rare sleep physician that understands the nitty gritty of dealing with CPAP every night for the rest of your life.

    Fortunately, there are (some) good RT’s and DME’s, and support systems like apnea support groups and online forums that can help.

  3. Dear Jan, you said: “Many people with OSA are surprised to find that once the OSA is well-treated, they no longer have to get up at night to urinate. Their kidneys and bladders haven’t changed, only their level of wakefulness that lets them feel the urge to empty their bladders.”

    It is not generally known that apneas increase the production of a diuretic hormone called ANP, which causes the kidneys to make more urine than what is needed. Here’s a link to a medical paper which discusses that:

    http://www.sleepcenterinfo.com/pdfs/pdf-references/osa-and-nocturia.pdf

    Obstructive Sleep Apnea, Nocturia and Polyuria in Older Adults

    “Conclusion: In subjects with elevated AHI (>15), nighttime urine production and ANP excretion are elevated.”

    My husband has severe OSA and is on CPAP. Most nights the CPAP is successful in almost eliminating apneas (AHI 0.5 to 2.5) but he has the occasional bad night (AHI 8.0 to 10.0). We notice that, after a bad night, he has polyuria throughout the day, and it may take a day or so for his kidneys to settle down to “normal” again. This is our personal experience.

    Many thanks for your interesting and informative blog, Jan.

    • Thank you for that very interesting information! I learned something new.

      I guess if you don’t have an EFFICACY capable CPAP machine, this is one way to tell if your therapy is effective or not (assuming you’re someone who has to get up to urinate at night or frequent urination during the day in the first place). But isn’t it interesting to have efficacy data available to see this correlation?

  4. Fortunately my husband’s CPAP does show his AHI after each sleep. How he feels, correlates inversely with the AHI; the lower the AHI, the better he feels afterward. We would not want to be without that data.


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