Cheyne-Stokes Respiration -- When to go to ASV machine?

[TexasTom]

Sleepy Head will flag CSR events occasionally, but when I zoom in on "random nothing noted" locations you see that same waxing/wanning breathing pattern.

So my question is "how much CSR during the night is too much?" Trying to understand if I really need a ASV machine, and if so I need ammo for insurance company to upgrade me to the ASV machine. I do have Parkinson's, so the CSR is not unexpected. Thankfully my heart is stronger than an ox, but the head is another matter.

CA's were noted during sleep study, but insurance wanted to see 6 months of compliance with CPAP first to see if it helped. <grin>

[palerider]

Sleepy Head will flag CSR events occasionally, but when I zoom in on "random nothing noted" locations you see that same waxing/wanning breathing pattern.

sleepyhead doesn't flag anything, it reports flags from your machine.

however, the flag your machine is setting is "periodic breathing", NOT CSR.

sleepyhead has that flag mis-labeled.

you can go into your event flags configuration in preferences, and change the label to "Periodic Breathing" and "PB".

[Pugsy]

The Respironics machines report PB..not CSR and PB is just a waxing and waning of the air flow. CSR is a type of periodic breathing but it is not the only form of periodic breathing. I hope Mark changes this CSR thing to the correct PB terminology in future SH releases. It's just causing a lot of confusion and panic.

This is what CSR looks like and usually central apneas are involved.

[TexasTom]

Thank You!

[TexasTom]

Just a follow up. Another thread was dealing with questions about Tidal Volume, but was asked not to post in that thread but back on my original to keep the flow.

I'll meet with the Sleep Doc next week, been going over my SleepyHeadData and notes.

I typically take medications for Parkinson's every six hours. Added evening dose, and have a "supplemental dose" when I wake up. It is interesting to see I have a pretty good sleep, and breathing.... but as my medication wears off I return to Periodic Breathing.

Nights vary, but as medication is "off", I get to deal with dystonia issues. So pretty clear when "on" medication, then when it wears "off". Just thought it was interesting to notice the variation in tidal volume.

Oh... Tidal Volume. 6'3" 270# guy with a big torso/large lungs. CPAP therapy helps, but obvious other issues are at play

Earlier in the evening (medication good)



Later, as medication wears off I return to periodic breathing.

[JohnBFisher]

Personally, in your shoes I would discuss what you just posted with my doctor. If the periodic breathing is a concern for you, I would ask your doctor if it might be time to consider ASV therapy. Remember, of course, that some doctor's greatly distrust the machine data. I would provide such sample graphs from several nights (four at least). I might even include the data from several nights when you did not take medication prior to bed, to see if that changes the graphs. Of course, that's ideal. Since you are meeting with your doctor next week at least one night without medication and the resulting graphs might be informative.

Should your doctor decide to see if ASV therapy is appropriate, then expect another sleep study with ASV therapy titration.

Let us know how it all falls out.

[TexasTom]

Thanks John. Sage advice.

Went through last six months of CPAP with my sleep doc, and consensus is "keep doing what I am doing". Since we can see a correlation of when my Parkinson's medication wears off and periodic breathing. Periodic breathing isn't a concern as the cause is known. When CSR kicks in is when dystonia occurs, which wakes me. So a little medication to help release the muscles and back to sleep.

Everything else looks great, fewer than 5 AHI on bad nights. So advice is try to keep it up, and stick with constant 8CFM on the machine as results look good.

[Danbeck]

For the first 5 years on therapy, I was using the wrong machine, felt horrible. Then with new sleep study, found I had periodic breathing and was given ResMed Adapt ASV. In 4 years have 11,600 hours on it. It saved my life. I've learned that PB is a marker for Parkinson's . I have some issues like tiny foot steps, shakes, etc that makes me think I should check this out. Anyway, your flow pattern makes me suggest that you should evaluate this further. Like right now. Good luck, Dan

[archangle]

Look at how long you're "in" periodic breathing. Looks like a few minutes a night in your graph.

Look at how completely you stop breathing. Looks like you're breathing pretty well and your breathing only gets really low for 10-20 seconds. You then get good breaths for a while before you have another dip in breathing.

Stop and think about what's going on in the airflow graphs. Maybe even try varying your breathing while awake to match the graphs, breathing for a while, then slowing down and pausing for x seconds, etc.

From the graphs you've posted, I don't see anything that would worry me. The main concern about PB/CSR is the time at which you're not breathing, how long, how frequent, etc. and the oxygen deprivation, stress, and sleep disturbance you have. PB/CSR/CA aren't necessarily any more dangerous than regular obstructive apnea, just harder to eliminate. If it's bad enough, you'll probably show up with a higher AHI or CAI.

Quite a few CPAPers see some waxing and waning patterns like this with no problem.

What's your AHI? To me, it looks like you're "cured." Are you having any problems you blame on apnea or CPAP?

I think you should just do your regular followups with your doctor and not worry unless you're having problems.

[JohnBFisher]

Archangle, it sounds as if the OP and his doctor understand the cause of the PB. There is no "cure". There is just learning to manage the symptoms. In this case, it appears taking medication is all that's required.

In addition to the more common heart issues, periodic breathing can be a marker of someone with Parkinson's Disease or with some form of dystonia. For example, someone with Multiple Systems Atrophy might start to develop periodic breathing.

Please be aware that while left unmanaged, the periodic breathing actually does place a fairly high burden on the body. Though seen as the symptom, it essentially tends to magnify the underlying problem through a positive feedback loop with very bad consequences.

Fortunately, the OP and his doctor have identified the cause of the periodic breathing. This allows them to better manage and control the periodic breathing. My compliments to both. Far too many patients with Parkinson's Disease just let the various symptoms occur, without attempting to manage and minimize them.

[TexasTom]

Thanks John.

First clue I had about apnea's was when I ended up in the ER due to blocked colon (no BM for nine days, not good)... and I was trying to sleep, and the darned O2 meter kept blaring when I would drop into the 80's. It was a pain in the butt, but it would wake me up. I'd sit up, cough, it would go to 96. Drift of to sleep it was 82 when I would wake back up. Since then we've ramped up the medication and I'm doing pretty well.

For the first 5 years on therapy, I was using the wrong machine, felt horrible. Then with new sleep study, found I had periodic breathing and was given ResMed Adapt ASV. In 4 years have 11,600 hours on it. It saved my life. I've learned that PB is a marker for Parkinson's . I have some issues like tiny foot steps, shakes, etc that makes me think I should check this out. Anyway, your flow pattern makes me suggest that you should evaluate this further. Like right now. Good luck, Dan

I had PD for some years and never knew it. It was odd as some days I felt like I was drunk, with a loss of balance and slurring of words. I'd get odd comments about "could you speak up" which had never been an issue, and my wife would always ask "are you mad at me?". Nothing made sense, but seemed to get worse as the day went on. Sleep, back in the morning, did OK.... but by afternoon that shakiness would reappear.

There is no medication that stops the progression, only manage symptoms. Best you can do is to exercise, eat sensible, and try to get a good nights sleep. Over time as I have ramped up the medication, and add supplemental medication as needed, I'm doing better sleeping. Still not eight hours, but better than three. CPAP has helped keeping the oxygen levels up. I really feel better than I have in years. I hate exercising, but a good sweat 3x weekly (intense 45 minute work out, 40 minutes at 90% target heart rate), then off days with weights and a book by David Zid (Delay the disease) is helping.

I'd look into finding a decent MDS (movement disorder specialist). PM me if you have questions.

Tom

[JohnBFisher]

Me? Oh, I've got a great neurologist, who also specializes in sleep medicine. I've had all sorts of tests ... MRIs, Neuro-Psychology, Neuro-Ophthalmologist, Modified Barium Swallow Test, Sleep Studies .. You name it. I have Sporadic OPCA (Olivoponotocerebellar Atrophy). That is, my cerebellum and brain stem are degenerating. My situation is likewise progressive. We attempt to manage the symptoms. Like you, that's about all that can be done.