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CNS Apnea - mandali44 - 01-02-2017
Hello. I have severe sleep apnea, narcolepsy, and restless legs. After many years of using a Bi-PAP without a lot of success, it was finally determined that I have mixed apnea, that is, both mechanical and central nervous system apnea. The Bi-PAP did not help with the CNS apnea. Now I have a machine that somehow makes me breathe. I don't really understand it. Recently (within the last two years), I have had difficulty breathing when I am awake. I had a battery of pulmonary testing and my lungs are fine. (I should mention that I am a very active 72 year old woman.) The interesting thing is that while I feel like I am having trouble breathing, my O2 saturation is just fine. But I feel as if I need to gasp for breath. My pulmonary doc (who is my sleep doc) says that he thinks that this is related to my CNS apnea. The part of my brain that should tell me to breathe when I am asleep, but doesn't, is probably working overtime when I am awake. It is telling me that I need to breathe when I already am. This makes me feel that I have to get air in when I already have air.
It seems to be getting worse. I don't have it all the time but I seem to be having it more often and having it last longer. It is becoming very troublesome to me and I wanted to see if anyone else is having this problem and what they are doing to deal with it.
Thanks for any info you can give me.
RE: CNS Apnea - richb - 01-02-2017
Hi mandali 44. Welcome to the Apnea Board. It looks like you have the correct type of machine to treat your nighttime Central Apnea. What you are experiencing during the daytime is another story but I think it is related to your nighttime condition. I seem to experience similar symptoms during the daytime as well. I brought this to my Doctors attention but she was not ready to listen. I have an upcoming appointment and will discuss the daytime Apnea again. For starters feel free to look through some of my early posts where I discuss my Idiopathic Central Apnea. I point out that it is most likely caused by a fault in the feedback loop between the circulatory system and the nervous system. The Carotid Body is the primary site for this interaction. What is happening is that the Carotid body senses the level of acidity in your blood that results from the formation of carbonic acid. In other words you are measuring your CO2 level. My problem and probably yours is that my Carotid body is not measuring properly and signals that I have done enough breathing. My nervous system then suppresses my breathing. When asleep this results in Periodic Breathing, Central Hypopnea and Central Apnea. Our doctors seem to agree on this and have prescribed ASV machines to treat this. The problem is, what happens during the day? I suspect that when at rest our breathing is suppressed to some degree as well. You can test this with a finger Puls Oxymeter. In my case my O2 level drops to as low as 94% when I am at rest. The problem is that when I get up I am immediately out of breath. It takes a minute or more for me to catch my breath. Once I am active my blood O2 seems to recover to normal levels. Is this similar to what you are experiencing? I have done some research and find that some Doctors are treating this kind of breathing problem with medications used for High Altitude Sickness (Diamox). You might be a candidate for a trial. Diamox is given to people on a routine basis when they are traveling to Machu Pichu in Peru. One caution is that Central Apnea is a condition also associated with Congestive Heart Failure. You need to rule out CHF as a cause of your worsened Central Apnea just in case. You said you were an active person so this might just be a cautionary note. Keep in touch. I think we have something in common here.
Rich
RE: CNS Apnea - mandali44 - 01-02-2017
Thank you for responding so quickly. I think you are right about my breathing being suppressed at rest. However, when I become active, sometimes I still am fighting to breathe. This morning I am breathing regularly but yesterday I was gasping for breath for hours. I have an appointment on Friday with both the respiratory therapist and the sleep doc and plan to discuss this.
As to Congestive Heart Failure, I had a cardiac stress test when I was having the pulmonary testing. They had to stop the testing after 10 minutes because they were unable to get my heart rate up. I was told that I have the heart of an active 36 year old woman. I was a distance jogger (marathons and half marathons) for many years and now I tap dance daily. I think all my cardiac exercise protected my heart. I have read that sleep deprivation can damage the heart and I have been running on empty for so many years that I have brain damage. Without the machine I had 60 episodes an hour so I didn't have any REM or deep sleep.
I will let you know what my doctor says about my daytime Apnea and I hope you will share with me the results of your appointment.
Thanks.
RE: CNS Apnea - richb - 01-02-2017
(01-02-2017, 09:49 AM)mandali44 Wrote: Thank you for responding so quickly. I think you are right about my breathing being suppressed at rest. However, when I become active, sometimes I still am fighting to breathe. This morning I am breathing regularly but yesterday I was gasping for breath for hours. I have an appointment on Friday with both the respiratory therapist and the sleep doc and plan to discuss this.One more thing to check. O2 desaturation can cause a rise in blood pressure. I found that if I took my BP at rest it was slightly elevated. All I needed to do was take 10 deep breaths to get my BP to low normal. Also sounds like CHF is not an issue for you.
As to Congestive Heart Failure, I had a cardiac stress test when I was having the pulmonary testing. They had to stop the testing after 10 minutes because they were unable to get my heart rate up. I was told that I have the heart of an active 36 year old woman. I was a distance jogger (marathons and half marathons) for many years and now I tap dance daily. I think all my cardiac exercise protected my heart. I have read that sleep deprivation can damage the heart and I have been running on empty for so many years that I have brain damage. Without the machine I had 60 episodes an hour so I didn't have any REM or deep sleep.
I will let you know what my doctor says about my daytime Apnea and I hope you will share with me the results of your appointment.
Thanks.
Rich
RE: CNS Apnea - mandali44 - 01-02-2017
I hadn't thought about checking my blood pressure but that is a good idea. I normally have good blood pressure but it starts elevating when I have had to layoff exercising. I am currently on blood pressure meds as I broke a bone in my foot and was not dancing for some months. My foot is healed and I am back dancing but it takes a while for my blood pressure to lower, especially as I am not back to my full activity level.
RE: CNS Apnea - richb - 01-02-2017
I suggest you install Sleepyhead software and take a look at your flow and pressure waveforms. You can post images for us to comment on once you have 4 posts of your own.
Rich
RE: CNS Apnea - mandali44 - 01-02-2017
I just downloaded the SleepyHead software but I am not quite sure how to interpret all the information. One thing I should point out, it says my average amount of sleep is a little over 5 hours. This is actually an improvement from when I first used my AVS. Because I was so used to running on empty, I would wake up after 3 or 4 hours as my body would think, wow, a good night's sleep, time to wake up. I am trying to increase the length of time I sleep, but it is slow to improve. I am unable to lie in bed with the mask on waiting to fall back asleep. I wore a mask for so many years without much relief that I have a real aversion to it. In some ways it is fortunate that I have narcolepsy because I fall asleep as soon as my head hits the pillow and I don't have to lie there waiting for sleep.
I will post some of the SleepyHead results in my next post. What part of the results is the most helpful and what is the best way to post it?
Thanks.
RE: CNS Apnea - OpalRose - 01-02-2017
Hi mandali44,
See the tutorials under my signature line.
This will guide you in organizing your graphs and the best way to post them here.
RE: CNS Apnea - Gideon - 01-02-2017
My sig leads you through SleepyHead from download thru posting.
Post if you have issues with this.
Rich is not the only one on the board familiar with ASV though I am not one of them.
You have found a good place.
Fred
RE: CNS Apnea - richb - 01-02-2017
mandali44, You are making very good progress toward gaining control over your treatment. As you can see there are a number of us taking an interest in your situation. Read trough the suggested Sleepyhead tutorials and post your data including flow and pressure waveforms. In addition, highlight some 5 to 10 minute segments of both Apneas and "normal" breathing to get and give us an idea of your various sleep problems. The Sleepyhead data will confirm your diagnosis or suggest we look at something else. The more you know the better you will be able to work with your Doctor. Also, continue to read everything you can find on this forum and elsewhere regarding Central Sleep Apnea (not involving CHF). The scholarly literature is limited with everyone suggesting more research.
Rich