Anyone else with CSA?

topic posted Thu, August 10, 2006 - 5:27 AM by  Maria
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I've just been diagnosised with Central Sleep Apnea. The doctor says he has little info on this type of apnea as OSA is much more common. Does anyone know where I can find more info?
posted by:
Maria
New York City
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  • mc
    mc
    offline 63

    Re: Anyone else with CSA?

    Thu, August 10, 2006 - 9:43 AM
    Welcome, Maria.

    I think you are the first person on this board to post specifically about CSA as a sufferer.

    I really don't know much and for the moment, all I can reccomend is stuff you probably already tried like doing a Google search for "Central Sleep Apnea" and visiting the AMA and groups like the Mayo Clinic online.

    From what little I do know, CSA is different than OSA because it involves your central nervous systsm (autonomic breathing) - essentially, something misfires in your brain's breathing patterns when you go to sleep and interrupts your breathing cycle. The results, however, seem to be more or less the same - interrupted breathing leading to interupted sleep patterns, oxygen deprivation and stress on your system. Interestingly, on my search this morning I found that with CSA, unlike OSA, there is a possible area of treatment that involves meds. I had already known that CPap and BiPap therapy were also indicated for CSA. I wish there were meds to consider for OSA as part of the initial treatment.

    Whatever the case, we welcome you here and want you to know that you are around good folks. We aren't neccesarily health care professionals but we understand the huge impact sleep apnea has on our lives. Please feel free to ask anything you want or vent or go on a rant about the stress of living with apnea. People have also raised issues on the practical aspects of apnea therapy (like cleaning masks, dealing with congestion, etc...) and have been able to share bits of information gleaned from personal experience. If you have the time, read some of the other threads. Or, just bring up issues right off the bat.

    In the meantime, if you have not already looked in these places:

    - Google search results for "central sleep apnea"
    www.google.com/search

    - Mayo Clinic article (it is multiple pages and not just the first, linked page here - just click on the continuing links):
    www.mayoclinic.com/health/s...a/DS00148

    - Medline Plus (online medical reference):
    www.nlm.nih.gov/medlineplu.../003997.htm

    - Good 'ol Wikipedia:
    en.wikipedia.org/wiki/Sleep_apnea

    I don't how much your doctor has told our or you have discovered, so please do not take any of the following comments as consdescending or in question of your intelligence: In the meantime...

    - avoid depressants (including alcohol near bedtime) and narcotic sleeping pills as they can dramatically compound both OSA and CSA symptoms
    - bug your doctor for more info or a good referral
    - know that while therapy for sleep apnea can seem quite intimidating at times, the results (when treatment is applied well) is usually quite phenomenal if your apnea is severe

    Good luck Maria. Tell us more about what you find out about CSA. I am sure there are or will be others here specifcally suffering from CSA.
    MC
    • Re: Anyone else with CSA?

      Thu, August 10, 2006 - 10:34 AM
      Thank you for your warm welcome and info.
      • Re: Anyone else with CSA?

        Thu, August 10, 2006 - 8:50 PM
        Hey, Maria!

        What is your doc suggesting with regard to treatment? That must be very scary...I am glad you found us and I welcome you warmly!

        Darla
        • Re: Anyone else with CSA?

          Sun, August 13, 2006 - 11:07 AM
          My doctor suggested CPAP which I went for this past Friday. I was not able to sleep with it. I tried on several different masks. I'm not sure what the study is going to show since I probably splet for about an hour or so. I get the results in 2 weeks. I didn't feel any better with it either. It doesn't seem like something I could get use to. I'm disappointed because I had really hoped this was something that would work for me.
          • mc
            mc
            offline 63

            Re: Anyone else with CSA?

            Sun, August 13, 2006 - 12:17 PM
            Maria...
            I think I know somewhat as to how you feel. It took me almost (3) years to get to where I could actually comply on a regular basis. There are still times when I just get so frustrated with the whole getup I end up just ripping it off and not using it.

            I don't know how thing will work for you and I cannot assume you are the same as I am...but here are things that have helped me to finally get "used" to the whole deal enough to use it regularly:

            - finding a mask that really works with me...I made the false assumption that my first mask was more or less representative of the way all masks feel in use. For me, I found out over a year into the process that I was wrong. Getting a different mask immediately made the whole deal more bearable.
            - I don't know if you have a nasal-only mask or a full-face mask...but you could try the other if one isn't feeling right. Full-face masks let mouth breathers and partial mouth breathers feel more "natural" about it...Full-face masks also help when one has nasal congestion
            - When I started to use my iPod at night, it really helped me to become less preoccupied with the discomfort of the mask. Having music on is very soothing to me.
            - I experimented with humdifiers (ones specifically for cpap/bipap machines) and after going back and forth, I generally don't use one. Others have found it much more bearable to use one. I think the bottom line is a humdifier (or lack of) is also a comfort factor so I suggest investigating that.
            - Another major milestone for me was to combine my bipap therapy (Cpap's and BiPaps are almost the same thing) with the use of non-depressant sleep therapy meds or natural remedies to help with my sleep. For me, personally, I chose an alternative route over drugs like Lunesta/Ambien (which was also suggested for me). You can read about it on another thread ( livingwithsleepapnea.tribe.net/th...b1c ) - I try not to talk about too much here because I know it can be quite contreversial. But I think whatever works with each individual could help. There are numerous sleep meds that do not depress breathing (csa) or contributes to throat closure (osa).
            - And last but not least, this might sound silly but I tried to inject some humor into the situation by "role playing" as Darth Vader when I put my mask on - Seriously, a little bit of "Luke, I am your father" and "together we can rule the universe" helped me feel like less of a freak and helped make the strange breathing feel a bit better.

            I have no idea if any of these suggestions will help you. Just thought I would share in case one actually might. In the end, I can only tell you that if you stick with it, it will get better and become more routine. You are definitely NOT the only one who just can't stand the whole getup as you start therapy. I suspect compliance is a major issue in osa/csa therapy.

            Check a new post today (08-13-06) where I posted a link to another great sleep forum I found - there is lots of traffic there but it seems there is a huge group of people sharing experiences about numerous sleep and sleep disorder issues:

            www.talkaboutsleep.com/messag...dex.php

            Peace, Maria.
            MC
            • Re: Anyone else with CSA?

              Sun, August 13, 2006 - 4:16 PM
              Thanks, MC for the support. I am definitely going to try whatever I can because I need to feel better. Some days are better than others but the worst I think is the mental exhaustion. I want to be able to think clearly!! I also want to be able to wake up and feel like I actually got a good night's sleep. So I will try and try and try until I get there. :-)
              • Re: Anyone else with CSA?

                Sun, August 13, 2006 - 5:18 PM
                Maria,

                I was one of the lucky ones - had very little problem adjusting to all the machinery. I DO realize how lucky I am!

                mc referred to both CPAPs and BiPAPs, and if you don't know the difference, I'll tell you. They are essentially the same machine, same therapy, however the CPAP has the same CONITNUOUS air pressure for both inhalation and exhalation. The BiPAP (which I use) has differing ihalation/exhalation rates depending on what the sleep study showed was most beneficial. It's actually rare that I do not use my machine...THAT'S how helpful I have found it. I use a full face mask, and I hate the headgear (particularly the fastening strap - lower), but it helps me live my life, so WTH. Can't make an omelette without breaking eggs, right?

                Hang in there. I share mc's reluctance to go the pharmacological sleep route because of the depressive respiratory effects. Now that I am on a semi-normal sleep schedule, I find I no longer have the same needs for sleep aids as I once did.

                Darla
    • Re: Anyone else with CSA?

      Wed, September 6, 2006 - 8:18 PM
      Maria, how are you managing with your CPAP machine? Are things getting any better?
      Tell us what problems you are having and maybe someone can help. Even me, since I've learned quite a bit from the ASAA site.

      Are you having only central apneas? Did your doctor suggest any reason why you are having them? Have you seen a specialist about this? Also, I noticed that one of the CPAP machine makers has introduced a machine especially designed for central apneas. Have you found out about it?

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