Kennedys Disease Community
CPAP

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https://kennedysdisease.groupee.net/eve/forums/a/tpc/f/8581031121/m/1727005036

04-30-2013, 12:17 AM
BC Paul
CPAP
I am currently undergoing a CPAP trial (I have been diagnosed with both obstructive and central sleep apnea). It seems that when I have an episode of central apnea (when the chest wall does not automatically rise to take a breath), my tongue and throat also relax and the pressurized air takes the path of least resistance and inflates my stomach. Several times this has resulted in so much abdominal pressure that taking a proper breath has been extremely difficult and the bloating has been far harder to deal with than the fatigue from disrupted sleep. Has anyone else had this problem and how have you dealt with it? I have still not been able to see any professional with any knowledge of how KD is likely to affect the symptoms I am dealing with.
05-06-2013, 10:21 AM
Bob Heitzman
Not specific to your symptoms but...

As my SBMA progressed it became hard for me to lie flat on my back without causing difficulty breathing. Even tilting back for the dentist was, and still is, a problem. Acid reflex was also a problem. I have never been diagnosed with sleep apnea but the only tests I've had are overnight oixmetry.

To address these issues I elevated the head of my bed. I now have out of those old tin home hospital beds that have electric tilt and up/down. I also sleep on my side; I recommend a "side sleepers pillow" to avoid neck and jaw pain. I also lost a bunch of weight. I take prilosec for the acid reflux.


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email:rheitzman at gmail
05-06-2013, 01:56 PM
BC Paul
thanks Bob, I've gotten rid of the machine until I can be seen by a respirologist, so I am contentedly snoring again. I do have some elevation at the head and sleep on my side when I can, (bad shoulder), as it makes it easier to sit up when I wake gasping for breathe. None the less, I would rather wake up and be tired than be bloated and miserable(naps are good).
05-06-2013, 02:43 PM
Lolo
Not sure if it is smart to ditch the Cpap before seeing your Dr. I have sleep apnea (not KD, my spouse does) and have been using a Cpap for about 15 years. I have never felt "bloated." Before I was diagnosed, I was sure I was dying and nobody could tell me why. Well, I have severe sleep apnea, central sleep apnea and some kind of daytime problem too. I understand central sleep apnea comes from the brain not the chest, your brain does not tell your body to breath. Imay be wrong but that is how it was explained to me. So, if not on the Cpap and your brain doesn't send a signal, you may not wake up! You actually may need a bi-pap, not a cpap? Please go to the doctor!
05-06-2013, 05:45 PM
BC Paul
Thanks Lolo, getting rid of the machine was a joint decision. It was a trial which sent a wireless feed to the lab so they knew it was not helping with the central apnea anyway. Specialist in two weeks which is remarkably quick, so I don't have to hold my breath waiting for an appointment (ok, bad joke). I was doing not bad before I was tested and diagnosed with all these predicaments, so I should be good for a while yet (besides, if I stopped breathing now, my wife would kill me)
05-06-2013, 08:21 PM
Lolo
At least you have a good humor!! Wishing you the best and hope it all gets fixed quickly
05-26-2013, 10:19 AM
BC Paul
Your comments Bob, may have been right on the mark. As part of the ongoing search for answers, I have been to a speech therapist which required a barium swallow test. Turns out I have Dysphagia and GERD; which led to a discussion about the Vagus Nerve which it seems could be involved in many of my symptoms. I have had the best nights sleep in several years (6 hrs straight)for the last week by taking Zantac and Tylenol arthritis just before bed. Pulmonary specialist later this week and another oxymeter test to follow.
06-24-2013, 12:52 PM
BC Paul
Just a followup, am now using a foam wedge (which replicates Bob's suggestion above), but when travelling to NIH recently, had recurrence of problems when sleeping flat in hotel rooms. I wonder how often the use of CPAP devices is treating symptoms and masking problems?
06-25-2013, 08:53 AM
Bruce
BC Paul, the wedge works great for me and has for many years. When traveling, I ask the hotel's maid service for additional pillows. Usually 2-3 more makes the difference in creating a temporary wedge. Give that a try and see if it helps.