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Permalink Reply by RL on January 21, 2011 at 1:46am

http://www.medterms.com/script/main/art.asp?articlekey=9634

So is this different from Central Sleep Apnea only in severity of hypoventilation?  Have you heard of the other symptoms mentioned in the linked article?  This article suggests that breathing while awake (voluntary breathing) is not affected, only autonomic (involuntary) respiration is a problem.  I have seen other threads on SG in which people mention having pauses in breathing while they are awake, and maybe mentally concentrating on something, then finding themselves not breathing, at which time they consciously start breathing again.  Would that be a different condition?  When is someone diagnosed with Ondine's syndrome instead of Central Sleep Apnea?  Do PSG studies evaluate for this condition also?  

Did your doctor diagnose you with this condition?  If so, what was that process like? What age were you diagnosed with this, as you mention having symptoms since birth? The "congenital" part of the description seems unique.  This seems more complicated than most OSA patients experience, but certainly relevant for some.  Does this condition get worse with age?  It sounds like you and your mother were not treated at an early age so it is curious to me how you survived well into adulthood if that is the case.  Do have oxygen prescribed with your CPAP or does the CPAP get enough air into you to keep your oxygen levels up?  Did you have an overnight sleep study at a lab or some other means of diagnosis?

 

Anyone else with knowledge of this could answer any of my questions too.  This sounds rather rare, but still related to sleep apnea, especially Central Apnea which I am interested in understanding as much as possible.  

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Permalink Reply by James Strebe on January 21, 2011 at 7:25am

 



I was never formally diagnosed with this. My doctor only suggested the possibility of a mild form of it because of my past history with breathing problems. (The conscious effort to breath) Most of my young life I thought that all humans had to make conscious efforts to breath. It was not until I started having sleeping partners and the question of why I would always stop breathing in my sleep came up that I found out that even while awake then suddenly gasping for air was not normal. Although I had brought this to the attention of my several different doctors thought out my life, it was always brushed aside. As I grew older it became so severe that just taking a nap became dangerous "because it is a lot worse when I sleep". The decision to have formal diagnoses came when I started to feel like I was losing my mind. My memory had become so bad that I would be driving down the street and would totally forget where I was going. I do not use O2 although sometime I wish I had it.
My sleep study was done by a heart lung doctor in a hospital setting. I use an auto adjusting CPAP. I thought that the subject was very interesting so I posted it here to see if anybody else had this problem.

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Permalink Reply by RL on January 21, 2011 at 9:28am

Thanks for your reply James.  Your response is helpful in understanding your situation.  I was diagnosed with "complex" sleep apnea which is a combination of obstructive apnea and central apnea.  I've been seeking knowledge and experience regarding the central apnea part since there was no cause determined for this for me.  My diagnosis was done through a sleep lab and my Rx included an oxygen feed into my cpap while sleeping.  I believe this did help me, but the cost of the oxygen was a concern to me (the power use of the concentrator & monthly rental fee) as well as the awkwardness of the extra equipment.  It also generated a noticeable amount of heat and I don't have air conditioning in the summer.  I asked my doctor to Rx me an overnight oximetry test to determine if I still needed the additional oxygen and with the saturation averaging 91 they decided the CPAP was adequate without the oxygen.  So I'm wondering if you are finding your APAP has helped you to feel more rested and alert during the day.  If not, you could ask for an oximetry test yourself, to see if you do need the oxygen supplement.  I've been wondering if I need it back, as I haven't gotten my energy back as much as I think I should.  I'm still working on ways to improve that and identify what the cause(s) of my tiredness are.  

If any SG techs or M.D.s know about this condition, I'm still curious if this condition is part of what could be determined from a PSG test, though I suspect it would require additional knowledge of patient history to label it as such. This condition might be something parents would need to be aware of if their child was having breathing issues so they could take them to a doctor to be evaluated.  What a difference reduced oxygen would make to a child's brain development!

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Permalink Reply by James Strebe on January 22, 2011 at 10:44pm

I too have suffered with low or no energy levels.  I have noticed that if I sleep without the use of the APAP for any extended period of time such as when I get catch a cold or the flu that both energy and cognitive abilities drop way off.  After a few days of being back on the APAP I find that I am even more tired than before but I also notice that my cognitive abilities have increased.  I believe this to be my mind and body saying 'Thank you for the sleep but now I want to get back all the sleep that I missed out on.  It's like my body it trying to play "catch up".  After a few more days of extra rest (naps or early bedtime, late rise) I return to normal energy levels.

I really don't know what my diagnosis was and I never asked.  By the time I had the test done I was almost completely out of my mind.  I truly believe that without rest, the human mind would go insane.  I do remember that the doctor had this extremely serious demeanor and that he told me among other things I had stopped breathing over 170 times. After the sleep test I went through a gamut of other tests before he prescribed the APAP.  He told me that the APAP had a recorder in it and that after a few months I was to take it back and get one that had adjustable set points so that I could set it to the pressure level that I liked.  I never took it back because it works great.  I never thought of asking my doctor for an O2 monitor but now that you mentioned it that is what I'm going to do.  I was just going to buy one myself.

 

I think if I had an O2 generator I would put it in another room close the door and just run the tubing to my bedroom.  I did ask my doctor further about Ondines he told me that with my genetic background, past history and the test results it is highly likely that I have it, at least to some degree.  He told me that other than the possibility of taking medication that there was nothing more that could be done for me.  I opted out of the medication because of it strong side effects.

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