Diagnosed with Central Sleep Apnea (CSA)? How's therapy going?

Posted by cyrusmanz @cyrusmanz, Jan 6 2:12pm

Millions of people worldwide suffer from sleep apnea,the vast majority of whom are believed to be under the subgroup OSA (Obstructive Sleep Apnea).
There is a minority of sufferers however who fall under the subgroup of CSA (Central Sleep Apnea), a subgroup that is relatively new in scientific terms.
In fact if I am not mistaken, Mayo Clinic was one of the first organizations who published a paper on CSA.
At any rate, I am a CSA patient and keenly interested in this subject.
My intention behind posting this is to find if there are others like me here who have been medically diagnosed for CSA and if so, how their therapy is going? What machine (if any) has been prescribed and how they are feeling about their therapy.
In my case I have been prescribed a ASV BiPAP machine which I find very effective.
I do not always stop breathing when asleep but occasionally I do. In fact some nights I can go through most of the night without any interruptions and then boom, I stop breathing and wake up.
Before I was on ASV therapy, I was not able to get a good night asleep for years and now I can't even imagine to go to bed without masking up.
What I like about my machine is that it does not keep blowing air pressure down my throat. but rather it only acts if I stop breathing more than an average of 10 breaths per minute. This way I only get therapy when I need it and that is great as I won't be able to fall asleep with positive air pressure blowing in my face.
Anyway, it would be great to hear from fellow CSA patients,

Interested in more discussions like this? Go to the Sleep Health group.

Hello @cyrusmanz, Welcome to Connect. It's good to hear your Central Sleep Apnea (CSA) treatment with an ASV BiPAP machine is working well for you. I have obstructive sleep apnea and use a CPAP machine so I can definitely relate to being woke up when the pressure would get too high due to issue with my breathing and my CPAP mask. I haven't had that trouble for a long time but I am still on the lookout for a better type of mask to help with my sleep apnea.

@gramps, @gamesjr, @tiss, @mstara, @peetiepie and @jeepguy2012 have discussed central sleep apnea in other discussions and may be able to share their treatment experience with you. Mayo Clinic has some information on diagnosis and treatment of Central Sleep Apnea here – https://www.mayoclinic.org/diseases-conditions/central-sleep-apnea/diagnosis-treatment/drc-20352114.

The Mayo Clinic site mentions that some people with CSA have underlying condtions that may be partly causing the CSA. Treating the underlying conditions can help reduce the CSA symptoms. Are you able to share any more about your diagnosis or why the ASV was chosen over the CPAP device?

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@johnbishop

Hello @cyrusmanz, Welcome to Connect. It's good to hear your Central Sleep Apnea (CSA) treatment with an ASV BiPAP machine is working well for you. I have obstructive sleep apnea and use a CPAP machine so I can definitely relate to being woke up when the pressure would get too high due to issue with my breathing and my CPAP mask. I haven't had that trouble for a long time but I am still on the lookout for a better type of mask to help with my sleep apnea.

@gramps, @gamesjr, @tiss, @mstara, @peetiepie and @jeepguy2012 have discussed central sleep apnea in other discussions and may be able to share their treatment experience with you. Mayo Clinic has some information on diagnosis and treatment of Central Sleep Apnea here – https://www.mayoclinic.org/diseases-conditions/central-sleep-apnea/diagnosis-treatment/drc-20352114.

The Mayo Clinic site mentions that some people with CSA have underlying condtions that may be partly causing the CSA. Treating the underlying conditions can help reduce the CSA symptoms. Are you able to share any more about your diagnosis or why the ASV was chosen over the CPAP device?

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Thank you.
Yes, well, I think I fall under the so called "idiopathic" classification where no definitive cause for my CSA has been established as of yet, anyway.
That said my understanding is that CSA is still under study and although some links have been established by observation, no definitive causes have been established as of yet, in scientific terms anyway.
For example a link between the use of opiates and CSA has been observed but not yet established in a scientific study (some people can use opiates regularly and not develop CSA, for example).
Another observation is a link between long term use of CPAP for the treatment of OSA which in a large group of patients has led to the development of CSA but again not a definitive conclusion.

In my case I was having a rough time getting uninterrupted sleep for a long time and eventually this led to bursts of anxiety and at that point I decided that enough was enough and sought treatment through my physician who in turn referred me to a sleep specialist.
I was subsequently diagnosed with severe CSA last year after 2 polysomnography studies which showed an average AHI of >56, with => 90% CSA events.
I however believe that I have had CSA for far longer, dating back to my childhood when my slow breathing used to scare Summer Camp staff who would nudge me up from sleep just to make sure I was still alive:-). Those were the days that sleep apnea itself wasn't even a thing yet, let alone CSA.
At a median of only 9 b/min, my breathing rate is naturally far slower than the average 12-15 b/min, sometimes fluctuating between as low as 7 b/min to as high as 13 b/min , according to my sleep data which I use OSCAR CPAP software to examine ( Open Source Clinical Application Resource for CPAP use) .
My Oxygen Sat levels (SpO2) can drop as low as 82% without a machine (according to both my polysomnography studies and my own experiements with an oximeter) and at 61 if I had gone on without diagnosis, I would have definitely developed cardiac issues as side-effects of CSA, most likely leading to early morbidity.
I am currently waiting for an Angiogram to find the extent of damage (if any) that my undiagnosed CSA has caused over the years. So keeping my fingers crossed.

Anyway, that's my story in a nutshell .
Many thanks for your response which I'll be sure to follow up.
C.M.

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@johnbishop
So the second graph down is "Patient Triggered Breaths" , a detail of my last night breathing pattern while on ASV therapy. As you can see the machine intervened about 1,400 times to compensate for missing breaths and break up any upcoming CSA event, a core feature of ASV therapy. A normal CPAP does not do that.
This is the answer to your question as to why a ASV machine was prescribed and not a normal BiPAP/CPAP machine.
A ASV monitors every breath and acts like a ventilator on standby.

REPLY
@cyrusmanz

@johnbishop
So the second graph down is "Patient Triggered Breaths" , a detail of my last night breathing pattern while on ASV therapy. As you can see the machine intervened about 1,400 times to compensate for missing breaths and break up any upcoming CSA event, a core feature of ASV therapy. A normal CPAP does not do that.
This is the answer to your question as to why a ASV machine was prescribed and not a normal BiPAP/CPAP machine.
A ASV monitors every breath and acts like a ventilator on standby.

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@cyrusmanz Thank you for the explanation and details. Impressive what Sleepyhead data shows. I used it when I had my Dreamstation and Dreamstation Go but am not able to use it with my ResMed AirMini as it doesn't have an SD card or anyway to download the data by a patient as far as I know. The Sleepyhead data I have from the last time I downloaded it from April 2020 doesn't list the Timed Breath details but it may be my setup unless maybe it's only shown in an ASV machine.

There is an older discussion I started on using Sleepyhead but I'm not sure how many folks use it and try to understand all of the data. You might be able to help other members understand and learn more about the program with your understanding and familiarity with the software.

Want to see all the data stored on your CPAP machine's SD Card?: https://connect.mayoclinic.org/discussion/want-to-see-all-the-data-stored-on-your-cpap-machines-sd-card/

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I have mild sleep apnea and central sleep apnea. My doctor said he doesn't think I should stop using bipap. I have an odd sleep pattern where I fully wake up every hour and a half of two hours at most. I can call back asleep. The waking up seems even worse when I use the machine. Any one have suggestions that might help me clarify my thoughts prior to seeing pulmonologist?

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@roxiesmom13

I have mild sleep apnea and central sleep apnea. My doctor said he doesn't think I should stop using bipap. I have an odd sleep pattern where I fully wake up every hour and a half of two hours at most. I can call back asleep. The waking up seems even worse when I use the machine. Any one have suggestions that might help me clarify my thoughts prior to seeing pulmonologist?

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I would write a list of possible questions you have for the pulmonologist and take them with you. I find it easier to refer to questions I have written down, otherwise it's easy for me to forget. You might also want to write down your sleep pattern and symptoms like you did here. Here's a website with some tips on planning your conversation with the doctor – https://patientrevolution.org/visit-tools.

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@johnbishop

I would write a list of possible questions you have for the pulmonologist and take them with you. I find it easier to refer to questions I have written down, otherwise it's easy for me to forget. You might also want to write down your sleep pattern and symptoms like you did here. Here's a website with some tips on planning your conversation with the doctor – https://patientrevolution.org/visit-tools.

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Has anyone tried the new therapy called Inspiresleep.com? It is a device that replaces the c-pap. This device which is planted under the skin and comes with a remote. It been advertised on TV for about 6 months for sleep apnea and replaces the need for a mask.

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@martyk

Has anyone tried the new therapy called Inspiresleep.com? It is a device that replaces the c-pap. This device which is planted under the skin and comes with a remote. It been advertised on TV for about 6 months for sleep apnea and replaces the need for a mask.

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Hi @martyk, There is another discussion on the device that you may want to join. I think it boils down to it only works for those who qualify and I'm not sure what that means other than it doesn't work for everyone with sleep apnea.

Inspire Upper Airway Stimulation: https://connect.mayoclinic.org/discussion/inspire-upper-airway-stimulation/

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I am supposed to have a cpap machine, it didnt work for me, I am a restless sleeper, on the move always, it kept me awake way too much. Not sure if I want anything under my skin as such.

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