About

I came kicking and screaming to CPAP, but here I am. I have a love-hate relationship with my machine, my mask, my HMO, and the sleep clinic.  With the DME, let’s just take out the “love” part.  “Nuff said.

Responses

  1. Fabulous site. Reading your blog is very much like eating my favorite dessert – I find myself clamoring for more! I leave for the DME in 5 minutes, but will come back to enjoy more. Great writing!

    • Welcome Laurie. I’m glad you find it helpful.

  2. Hi,
    I am going nuts with my FX and reading what you have to say is EXTREMELY helpful. I love the mask because my face is wider so I don’t get the leaks that way but I’m glad someone else thinks the vent holes are a twisted idea! My trouble is I can’t seem to figure out why the air keeps hitting my eyes and causing irritation/infection. I will try your suggestions on fitting and hopefully problem will be solved.
    Thanks

    • I sure hope the suggestions work for you. I get eye leaks when the nasal pillows are leaking (why, oh why, do leaks make a beeline for my eye???). Besides the fitting techniuqes, a couple of other things you should check:
      1. Make sure the inner pillow didn’t turn itself inside out. Sometimes that happens when you wash the pillows and when they are starting to wear out.
      2. As the pillows wear out, they get “mushier” and don’t hold the seal as well.

      You might check with an ENT. Some people seem to think that the pressure of air in their noses is going up into the tear duct that drains into the nose–it’s supposed to have a valve that prevents that from happening, but some people experience this problem. In that case, the direct pressure from the nasal pillows may not be best for you.

  3. THIS is a very helpful blog. Thanks for the info re:DME and insurance. Fitting guide is also right on.

  4. This blog is awesome! It should be required reading for anyone newly diagnosed with OSA. I wish you were here 8 years ago when I was diagnosed with OSA and got my first machine. Well done!

    • Thank you (blush)!

  5. Thankyou for your blog as a very newly diagnosed stressed out person it is reassuring to find that others are also experiencing some of the issues that I am. I was beginning to wonder……if I was just a complete nutter. I have settled on the Resmed Swift Lt for her and hope that I do not end up regretting it. Once again this blog is worth its weight in gold as I find out more information here than elsewhere thus far.

  6. Hi,

    Good posts. Have question about getting a sore throat about 5 months into using my Respironics with nose pillow. I only feel it when swallowing from time to time on one side of upper neck. Went to ENT and PCP and didn’t find anything. Could it be my machine and/or humidifier settings. How can I test this out? or suggestions? Its my PCP that had me check for apnea beginning of year.

    • If you want to test out your humidifier settings, lower it ONE notch and try that for 5 to 7 days to see if it makes a difference. If it’s definitely worse return to the original setting plus ONE and see if that’s better. If it’s better but not completely, lower it one more notch and see what happens after a few days.

      Some people run their humdifiers in “passover mode” (I used to think that was only in the spring–LOL!) which means no heat at all, the air just blows over the water and collects only what evaporates. Others find they don’t need the humidifier at all. Some people want more humidity.

      I find that there is a very narrow range for my humidifier to help me. Too much and I get nasty sinus headaches. Too little and I feel dry and parched. I have to adjust it at different times of the year.

  7. Great Blog! Why is PR System One REMstar Auto with A-Flex better than PR System One REMstar Pro with C-Flex. What does Auto mean? Thanks!

    • A CPAP like the Pro blows at a constant pressure all the time (not counting the ramping feature and flex (exhalation pressure relief). So if your doctor prescribes 10 cm of pressure, it will blow at 10 cm all night long.

      An auto adjusts automatically within a range of pressures. If you’re having little or no airway obstruction, it will blow at the lowest set pressure, but as your obstructions increase, the pressure will go up to prevent apneas. The settings may be anywhere from 4 to 20, but ideally should be in a narrow range of about 5 or 6 cm. So mine, for instance, is set 9 to 15. When I start out the night, it starts at 9 cm, but in REM sleep when I typically experience a lot of obstruction, the pressure will increase up to 15 to eliminate my apneas. Many people do well on a single, fixed pressure all night and don’t need an automatic machine. Some of us absolutely need an auto adjusting machine because our pressure needs vary during the night.

      If you get an auto machine, it can still be run in a fixed pressure just like a CPAP. So the auto machine is superior, because it can be run in either mode. The beauty of this is that if you are having a problem, you can use the auto mode to see what pressures might work better to keep your apneas under control by setting a wider pressure range and “autotitrating”. If you only have a fixed machine, this is not easily done, most of the time you’d have to go through the expense and inconvenience of a new sleep study. (It can be done on a CPAP machine, but with much more trial and error). If you are in the process of losing weight, for example, your pressure needs may change. What a pain to have to go through a new sleep study every 30 lbs or so! That’s why, IMHO, an auto is better than a CPAP.

      • Thanks! They switched my machine yesterday from the cflex brick to the AutoIQ version. At this point I have no complaints because I slept 8 hours last night laying on my back. This was only my fourth night on CPAP. I didn’t move all night. I think the exhale feature on the AutoIQ is much better. I found it very easy to exhale. I haven’t slept 8 hours straight in many years. And I haven’t slept on my back all night since I was a teenager. I’m 48 now.

        They said I can’t get the A-Flex because my doc didn’t prescribe it. I would push back…but this Cflex machine seems to be working fine.

        The DME seems ready to work with me, so that makes me happy.

  8. love your site! You and I are traveling the same path when it comes to CPAP brother! It has taken me 18 months but now I can’t sleep with out the dang thing. Thanks for providing the info on the FX. I have a swift LT which I like but had always wished it was a tad bit lighter. Your posts gave me the courage to try the FX and I ordered it from my DME today.

  9. I’ve just been diagnosed with apnea; my dr said I was have 51 per hour and ox had dropped to 80%. I had a stroke in 2010 of myustery origin – I can’t help but wonder if apnea was involved. Anyway, I’m feeling quite overwhelmed. This blog looks awesome but I think I’ve read too much because it is all swimming in my head right now.. I don’t have a cpap yet; the dr sent a prescription to a dme who contacted my insurance but hasn’t gotten ins approval yet. Before the diagnosis, I could get to sleep easily, just not sleep well then. Now I can’t get to sleep either; I’m feeling anxious! I wish the insurance would give their approval so I can move on. Any suggestions for dealing with the anxiety?

    • Terry,

      There is a steep learning curve with a new diagnosis of sleep apnea. Right now the most important thing to know is that whatever else happens you MUST get a machine with full EFFICACY data that tells the number and kind of events you have each hour (Apnea Hypopnea Index or AHI) AND leak data. This information is essential, NOT OPTIONAL, to ensure you the best possible therapy. You will not get full EFFICACY data on any of the following machines that DME’s usually provide:
      Any ResMed with Escape in the name (Escape or Escape Auto)
      The Philips Respironics System One (Remstar) Plus.

      DO NOT let them give you one of the above! Other models in those brands are OK (I don’t think the Philips Respironics (Remstar) System One Auto IQ is a good idea either, but much better than the Plus machine, because at least it has data.

      Do not meet with your DME or let them tell you what machine they will give you until YOU call your insurance company and ask the following questions:
      1). Do you have to use a network provider? If so, where is a list of network providers in your area?
      2) Does the insurance company cover ANY E0601 machine?

      Knowing those two pieces of information are CRUCIAL. Then if a DME tries to give you any of the above machines, you can tell them that you will not accept those machines. If necessary you can go to another DME who will give you an efficacy data machine. If they try to tell you that those are the only machines your insurance will cover you will know better, because you checked yourself.

      As for the anxiety, I will tell you that it’s very hard to get used to the CPAP at first and anxiety may worsen initially. I had a lot of claustrophobia with the mask. However, one reason you probably have so much anxiety is that you spend most of each night bathed in stress hormones because your body is starving for oxygen and struggling to get you to breathe! Once you get a good CPAP therapy established, that stressor will be gone from your life, and it’s quite amazing how much less anxiety you will have. So you may have to put up with a little more before you can get some relief.

      Yes, I have a suggestion, look up some deep breathing exercises on the net (i.e. “Square breathing” is one such technique) and practice, practice, practice during the day. It really does help! And when you feel like ripping that mask off because you feel like you can’t breathe, promise to do some slow, deep breathing for 10 breaths first. Really commit to it. That helped me a lot to stop from ripping the mask off–it gives you time to realize you CAN breathe and calms you down a lot.

      Settings they put on CPAP machines to “help” newbies often work against you. So if you’re having issues, go to cpaptalk.com and ask for help (be sure to register and list your equipment). There’s great help there.

  10. Excellent information! Is there a particular hose management system/device you would recommend for another side sleeper?

    Pam

    • I made a homemade one, as you can see from my blog post about it. You might ask on CPAPtalk.com what others recommend.


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