Cpap

I originally started typing this for my own record keeping, but it occured to me that other folks might appreciate the info.  This post will be added to on a random basis as things change and update.

I originally went into my doctor for insomnia (and knee issues) on Sept 5th.  Symptoms: little to no snoring, waking up with a headache constantly, waking up feeling like my brain was wrapped in cotton constantly, waking up “every hour” most nights, feeling brain dead and fogged all day every day

First sleep test was originally schedule for the night of Oct 2nd.  However I ended up sick with a miserable respiratory infection and had to reschedule.  Next available appointment the night of Oct 30th.

After the first sleep test the administering nurse told me I should hear about my results in about 2 weeks.  I did not.  By the 4 week mark I kept thinking that I really ought to call the doctor and find out what the results were, but I tended to think of it as I was headed to bed, which isn’t exactly a useful time for such.

On Dec 4th (five weeks) I received a phone call from the sleep testing office to schedule my sleep test.  First available date Jan 22nd.

On Dec 5th I received a letter from my insurance informing me that I’d been approved for cpap therapy.  I guess this means they decided I have sleep apnea in some form.

On Dec 5th I called my doctors office and left a message asking for someone to call me back with the results of my first sleep test.  they called me back to tell me that they’d contacted the pulmonary specialist to contact me about going over my results.

On Dec 10th I got a letter from the pulmonary specialists office (with a date mailed stamp of Dec 5th) informing me that my appt was scheduled for Dec 14th.  At that appointment I saw a PA who said this is your numbers, you have sleep apnea, calls us back to schedule an appointment approximately 4-6 weeks after you receive your cpap machine, Bye.  I know they’re busy as hell (the waiting room was packed to standing room only when I went in), but really?  Apnea/Hypopnea Index (AHI) of 48.6/hour (which is high, you’re considered “normal” if your number is under 5).  Oxygen saturation dropped to 84% (anything under 90 is considered low).

After the 2nd sleep test it was confirmed that a cpap machine helps me.  The nose only mask did not work for me, 1: despite normally having no problems breathing through my nose normally the constant pressure as I was breathing made me feel like I couldn’t get a proper breath, and 2: I kept leaking air through my mouth.  Full face mask it is.  The nurse warned me it would take upwards of 3 weeks for me to actually get the cpap machine.

I picked up my cpap machine on Feb 8th.  By this time I’d done a bit of research.  Not all cpap machines are created equal, and its not just about differences between brands and therapies required.  If you’re going through this spend some time doing some research and don’t just take the machine you’re handed.  Some machines actually track all sorts of health info related to your cpap therapy and some don’t, and with that extra data you can make sure that you’re getting the proper help.  It’s worth the argument to make sure you’re getting a good machine.  Also, there are so many different kinds of masks, and not all masks fit all people.

The different machine manufacturers have software to make at least some info available to the user.  How much info they provide varies a bit, and isn’t especially comprehensive.  Especially if you start cpap therapy and your doctor insists your numbers are fine, but you don’t feel fine, seriously consider downloading a freeware program by the name of Sleepyhead.  You’ll have to join one of a couple different online forums to actually access the download, but it’s worth it.  It’ll allow you to actually see all that medical data that your machine is recording and give you all sorts of data to take to your doctor (or even modify your cpap settings yourself if need be).

The good news for me is that my very first night using the cpap machine made a HUGE difference in how I felt the next day.  I woke up with no headache, and no brain fog.  I was still tired as hell as getting used to sleeping with a mask on my face wasn’t quick, but the sleep I got was SO MUCH BETTER.  According to the cpap machine my AHI has dropped to consistently below 2, and on occasion I’ve had some nights with an AHI of 0.

My followup appointment with the pulmonary doctor is March 26th.

 

 

My husband’s been using a cpap machine for several years now.  At first it seemed to help him alot, but over the last year and a half or so he’s been waking up feeling foggy again.  His doctor scheduled an at home check, and the results said that he was fine and no changes were needed.

Once I was comfortable figuring out my data I decided to take a look at his data.  The machine he has is also one of the models that provides lots of data, so it should have been easy.  It wasn’t.  Turns out the SD card in his machine was screwed.  SO FAR, replacing it with a new SD card seems to be working fine.  The downside to that is that we lost all the saved data prior to putting in the new card, the cpap machine itself only saving “summary” data.  However, looking at those summaries, while his AHI is staying below 5, there are several days where its over 4.  Once we have a couple weeks worth of data on the new SD card we’ll be taking a closer look at it to see about adjusting settings to see if we can fix that.

3 Comments

  1. Ping from fredex:

    I recently (well, last Dec) switched from a full-face mask (which I H.A.T.E.D) to a nasal pillow. my AHI and other numbers mostly dropped
    way down to much better levels than I’d ever had before, but the leakage went up considerably. I have two different chin straps, can’t tell that either of them makes any difference.

    And with SleepyHead, i’ve learned that certain careful adjustments can help. I’ve had it set on auto-ramp since forever, but having seen that I changed to manual and started increasing the startup pressure til I got to where I didn’t feel like I was being shorted on air when I first put it on.

    And next time I see my sleep doctor (I think this coming Dec) I’ll certainly be showing him some of the sleepyhead graphs to ask what is THIS thing here, and what does THAT thing on this graph mean?

  2. Ping from bogie:

    I really can’t imagine how you can sleep with that thing. I guess a person can get used to nearly anything but am grateful I don’t have to find out. Anyway, I’m glad it helps!

    • Ping from Ruth:

      I got used to it faster than I was afraid I would. And I have to say that waking up with no headache and no brain fog was a huge incentive to keep trying to get used to it. Even for the first week, despite getting less total sleep than normal, I felt so much better on waking up.