Forum · idiopathic CSA and frequent awakenings

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[-] dreamless +0 points · over 2 years ago

I'm new to this particular forum.

I was diagnosed with Idiopathic central sleep apnea (CSA) 2 1/2 years ago. I am using a ASV advanced Bipap machine. I'm still struggling to get proper sleep. One problem I have is that if and when I do sleep, I wake up every 30 - 75 minutes during the night. I've been through 4 sleep neurologists and DME sleep advisors and cannot get any answers. All of the above seem to circumvent my problem as if they don't have an answer.

Does anyone have any thoughts about this situation ? I'm sure I'm not the only one out there having any issue like this...i think.

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[-] UnassumingOrangeRedCormorant9252 +0 points · over 2 years ago

Member267080,

You might want to head over to www.cpaptalk.com where members would show you how to download free sleepyhead software and see if therapy is optimal. There aren't as many ASV users but the ones that are there could help you interpret the data and provide advice on how to make adjustments.

I hope this helps.

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[-] Gram +0 points · over 2 years ago

I am sure you are not the only one struggling with this. I was diagnosed about 5 months ago and am still struggling to settle into using my ASV machine (ResMed S9). I am more aware now of the CSA as I am awakening enough to notice the problem. I suspect my awareness is related to the ASV machine giving me that extra burst of air which then awakens me. Sometimes I awaken in a near panic, trying to breathe. My Respiratory Therapist suggested that I may be reacting to the machine's return to normal pressure causing me to feel the drop in pressure, hence feeling like I can't get enough air. As I have reflected on that, I think he is correct. I have both CSA and OSA. I am considering whether to look into getting surgery for deviated septum, hoping that will take some of the apnea out of the picture. I have not yet talked that over with an ENT, though. My pulmonologist did not really encourage this action, indicating that it likely would not help. His attitude was somewhat disparaging toward the procedure, so I want to look into that via an ENT.

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[-] BrainsNeedSleep +0 points · over 1 year ago

Ahh, @Gram, I wish you were still here....I'd ask you to go read the article on complex sleep apnea under the Research tab up top, and print it out and take it to your sleep-care doc....

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[-] MakeSleepAPriority +0 points · over 2 years ago

Just a comment about ASV therapy.... I have had extensive experience with these devices. These devices are complex and they are usually used to treat complex, complicated health conditions including central, mixed and obstructive apnea. Individualized therapy is important and takes constant monitoring by someone who knows the technology AND the physiology of the pathologies being treated to accomplish. It also requires the team to thoroughly understand the detailed downloads the ASV units provide. The treatment team always should also include the patient so your input from your own education on the topic can be quite helpful. The team is essential.

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[-] Steph19 +0 points · over 2 years ago

What is ASV? Is that the machine that adjusts the air flow based on your breathing?

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[-] UnassumingOrangeRedCormorant9252 +0 points · over 2 years ago

http://www.sleepdoctor.com/csa.html

Scroll down to the end of the article for the explanation on the ASV Machine.

MakeSleepaPriority, the situation you have described would be ideal but sadly, that isn't happening in real life. Heck, patients with cpap, apap and bipap machines can't get their sleep doctors to thoroughly look at the datacard. They simply look at compliance and AHI and if all is well, they send you on your way.

By the way, I hope you teach your patients how to access software and download the datacard so they can understand what is happening and spot potential problems they need to bring to your attention. Sleepyhead software, which is free and is a great program, works with many ASV mahcines.

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[-] Gram +0 points · over 2 years ago

Yes, ASV is the one that adjusts air flow pressure based on your breathing.

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[-] Steph19 +0 points · over 2 years ago

This is the kind of machine that was prescribed for me. I used it faithfully for 45 straight days and thought I might die from lack of sleep. I awakened frequently, just as before I started using the machine. However, since I was awakening startled from the blast of air, I was unable to fall back to sleep for a long time. Prior to using the machine, I would awaken frequently but would be able to go back to sleep very quickly.

I have recently been fitted for an oral appliance. So far, I do not find it is making a difference. I still awaken frequently and now have a very dry mouth and lips when I wake up. The appliance is only 2 weeks old, so it is probably too soon to know if it may prove helpful in the long run.

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[-] Gram +0 points · over 2 years ago

So sorry, Steph19, that you're having this trouble. I, too, have FELT like my sleep is not good using the machine, but I have been regularly dreaming which I did not do before using the machine. I plan to discuss this with my Pulmonologist tomorrow. He is the one who kept doing sleep studies until he found out why things we're not going well for me and discovered my Central Sleep Apnea. I am thankful for him. He won't be pleased, though, that I have been taking some "mini-vacations" from my machine! ;-)

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