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Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
#1
Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
43 y/o male.

Years ago I had a basic in home sleep study done by the VA. They gave me a Phillips CPAP with a nose mask. Nothing about it worked for me and they weren't super helpful in trying to find a solution. They basically said I needed to fight through it, but I felt like it was trying to kill me. 

Fast forward to last summer. I was feeling pretty good about myself overall and did a 500 mile bike ride with no issues. 

Fast forward to last Sept. I got sick and was sick for about 3 weeks. Negative tests for COVID, flu and everything else they could test for. 

Once I got 'better,' i was never really better. I was exhausted, got out of breath easily, had constant swelling in one lower leg, and ended up putting on about 30 pounds in about 3 months. 

My doc tested me for a lot of stuff. We did lung scans, vein ultrasounds, EKGs and Heart Ultrasounds and numerous blood panels. Found a small fluid thing in the lungs that wasn't a big deal, had some borderline results on thyroid function, and slightly elevated CO2 in the blood along with a few nonspecific inflammatory markers, but nothing conclusive. 

Doc suggested we nail down this sleep apnea thing, so sent me to a specialist who put me in for a more detailed sleep study. That was last night. 

The tech said they had to switch to ASV to get me into a comfortable sleep pattern during the study. Said he witnessed Cheyne Stokes respirations during the study and suggested I may have central sleep apnea in addition to obstructive sleep apnea (I think he called it 'dual sleep apnea or something to that extent). 

So, it looks like CSRs are usually linked to heart failure or strokes, neither of which I have had (as far as I know). I am not at a high elevation. I saw that it can also be linked to neurological issues... and I do have some lower body nerve issues stemming from herniated discs in my back, but nothing that I would think could cause this. 

I haven't been able to find anywhere how likely central sleep apnea and CSRs are outside of those conditions... 

I know the sleep doctor will read the report and get back to me soonish, but is this development something I should be worried about in the opinion of the wise old sages on this forum?
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#2
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
(04-23-2024, 09:44 AM)srpmccarthy Wrote: So, it looks like CSRs are usually linked to heart failure or strokes, neither of which I have had (as far as I know).

Now might be a good time to see a Cardiologist and rule out any possible heart issues, at least for peace of mind.

When you were using the Phillips Cpap, did it record alot of Clear Airway events?

Also, if you have a copy of your sleep study, you can post it here and we can take a look at it.
OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
(04-23-2024, 10:39 AM)OpalRose Wrote: Now might be a good time to see a Cardiologist and rule out any possible heart issues, at least for peace of mind.

When you were using the Phillips Cpap, did it record alot of Clear Airway events?

Also, if you have a copy of your sleep study, you can post it here and we can take a look at it.

Thank you. 

I haven't seen a cardiologist, but they just did the EKC and heart ultrasound. I will definitely see about getting a consult with one if I can. 

Honestly, I don't recall anything about my time using the phillips CPAP other than it was miserable. 

And as soon as the sleep study is available I will share it. All I can see right now is the log/notes the tech made.
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#4
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
Welcome to the club,

That ultrasound will be helpful in 2 ways, checking the heart in general and for getting the ASV, as a step in ASV scripting will be getting the echocardiogram. To be clear, if you show Central Apnea in the PSG sleep study, ASV will be a good friend. As Philips Respironics is not for sale in the US now, you will want to request the ResMed AirCurve 10 ASV when it comes time for that info to be requested. Again an if right now, but if a doctor is mentioning ASV, they had to have seen Central Apnea, likely within a Complex Apnea diagnosis. Yet another if, if so no other machine will substitue or give good reliable therapy.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
I read your post; it was very similar to the story I live (save for the 500-mile bike ride!). 
Been in the apnea world for 12 years. 

Recently diagnosed with CSA so another study was done a week ago because  the machine I was given was not working. Still having events. Awaiting the report on the results. 
The technician said when I asked how did my brain do?, 'You finally went into NREM towards the end of the night.'
I understand the words, I just have no idea what that means.

I know you are not a Sleep neurologist, but, you are an experienced sufferer, so I ask: When I meet with the sleep specialist in about a week, I wonder if you have any suggestions about what I might ask or point out in addition to:

No cardiac complications in history
No pulmonary complications in history
Do I still have OSA?
I was misdiagnosed for two years with Narcolepsy
I have recently been diagnosed with Acquired Brain Trauma. I am in Neuro Visual Therapy for this.
Had a non-TIA -TIA on 12/6/22 all the indicators flashing red, no blockages seen in the scans-
  feel like that was the tipping point into CSA. 

My exhaustion has rendered me practically nonfunctional. I have no skin between me and my emotions anymore. 

Is this where I shut up and just listen?

thank you for reading this and offering any thoughts you might have.
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#6
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
(04-25-2024, 01:28 PM)laokg Wrote: I read your post; it was very similar to the story I live (save for the 500-mile bike ride!). 
Been in the apnea world for 12 years. 

Recently diagnosed with CSA so another study was done a week ago because  the machine I was given was not working. Still having events. Awaiting the report on the results. 
The technician said when I asked how did my brain do?, 'You finally went into NREM towards the end of the night.'
I understand the words, I just have no idea what that means.

I know you are not a Sleep neurologist, but, you are an experienced sufferer, so I ask: When I meet with the sleep specialist in about a week, I wonder if you have any suggestions about what I might ask or point out in addition to:

No cardiac complications in history 
No pulmonary complications in history
Do I still have OSA?
I was misdiagnosed for two years with Narcolepsy
I have recently been diagnosed with Acquired Brain Trauma. I am in Neuro Visual Therapy for this.
Had a non-TIA -TIA on 12/6/22 all the indicators flashing red, no blockages seen in the scans-
  feel like that was the tipping point into CSA. 

My exhaustion has rendered me practically nonfunctional. I have no skin between me and my emotions anymore. 

Is this where I shut up and just listen?

thank you for reading this and offering any thoughts you might have.

I assume they will have had a chance to review your medical history, but if not, definitely cover all of the history related things. 


My approach was to discuss literally every aspect of my health that was even peripherally related. And as he explained things to me I jumped in with questions as they came up. I am sure Dr. personality plays a role but I would say tell them everything that might be related and ask for clarification on anything you don't understand. Like, when my Dr. was telling me his theory about what was going on, I would ask about anything that didn't seem to fit so I could better understand.

To me, it's one of those situations where maximum information transfer going both ways is the best scenario.
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#7
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
Interesting case, and similar to mine. I was 29(10 years ago), in good shape, no health complications but started waking up gasping. Went and had a sleep study done and they told me mixed apnea but predominantly central in nature. Had a bunch of tests done on my brain and heart after the study and everything checked out. Between my sleep doc, neurologist, and 3 cardiologists and thousands of dollars later, no one can tell me why I have central apnea or what the root cause is. It's very frustrating. The good news is that after some ups and downs and trian/error, i am well treated on my resmed ASV.
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#8
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
thank you. self advocacy. it's going onto notes all over the apartment.
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#9
RE: Just had a sleep study - Central Sleep Apnea with Cheyne Stokes
I regularly  see CSRs in my OSCAR daily reports, mostly at near the start of end of sleep or when I am having mask/breathing issues and "half asleep". I also have night sleeps with no CSRs.  For 80 year old I am strong competitive swimmer  with relatively heavy workouts. Working with cardiologist and electrophysiologist on seemingly asymptomatic AFIB but ok echocardiograms. It is my call whether to have an ablation. Still, I am concerned with CSRs and  have attached two files from OSCAR  F12 screen shots from a particularly bad night with 4 CSR OSCAR reports via Res Med : one shot of the entire night and the other of a selected 20 minute CSR segment. 

CPAP background: Returned to CPAP after 5 years stop when  pulmonologist-read sleep lab test to showed CPAP not needed after the 10 previous successful CPAP years.  Restart based on A Flutter finding suggested prudent to re check on Apnea with pulmonologist home test. Mild + result.    Very difficult re start with masks and machine; after several subsequent pulmonologist Rx home tests, the pulmonologist decided  I was better off with just mandibular device than CPAP. Eventually using mandibular, mandibular and mask, and now just mask I have been having much better results in the AHI 2-8 range but also still mixed, as the attachment example shows. 

I would value inputs on the attached CSR readings. Obviously more attachments available if other views or nights useful.         
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