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Worried about Cheyne-Stokes Respirations
#1
Worried about Cheyne-Stokes Respirations
Hey everyone,

I am a long time lurker on this forum but have never had a reason to actually post myself, before now. First, let me start off by giving a little bit of background on my sleep journey thus far. I am 30 year old male, 5' 8" and weigh 145 lbs. Since I was a teenager, I have suffered from severe insomnia. I used to routinely go to bed at 4 am (as you'll see, I still do), wake up at 7 for school and STILL not be tired the next night. This went on for so long that my primary care prescribed me Ambien for 5 years, until I finally stopped around 21 years old when I switched PCP's. My new PCP was aghast at the thought of a teenager with a developing brain being prescribed such a strong medication for so many years. Needless to say, I got my first sleep study when I was about 23 years old. Like any person in their early 20's, I couldn't be bothered to go to a follow up appointment at the time to discuss my results  :| 

A couple of years later, I finally decided to call up the sleep center and request a copy of my results. The first one was uneventful, other than the fact that I had 150 arousals (Index = 28.2), 53 RERA's (Index = 10), and 1 OSA event, but I never fell below 93% oxygen saturation. Nonetheless, they still diagnosed me with obstructive sleep apnea. Fast forward to 2017, when I move out of state and my NEW primary care sends me for a second sleep study with CPAP titration. I took a single Benadryl to help sleep that night but still only got 2 hours and 20 minutes of sleep (the sleep center was wild). In that short time, at a pressure of 7 cm H2O, I had an AHI of 71.8 with O2 as low as 78%!! Overall, they determined that I was intolerant to CPAP for whatever reason and recommended a follow up with BiPAP titration. Two months later, I go for another sleep study using BiPAP with a FFM. I end that study, having had an AHI of 0 and only two RERA's at a final pressure of 12 IPAP/7 EPAP. The comments also said "since the patient has some remaining snoring events, BPAP pressure of 13/9 cm of water may be more optimal." 

After I started treatment, I was still noticing fatigue the next day even after sleeping 7-8 hours. I will admit, that I was VERY inconsistent with my treatment, partially due to my perceived lack of benefits. I'd wake up in the middle of the night and take the mask off, or not wear it at all. I am now at a point in my life where I have taken my health much more seriously the last few years and feel as though quality sleep is the missing link. Since my early 20's, I've been diagnosed with Fibromyalgia (which causes me substantial pain at night) as well as a torn labrum of the shoulder (which causes me to toss and turn A LOT). I'm not sure if either of these conditions have anything to do with my terrible sleep or not. Anyway, I finally decided to download and upload my 3 years worth of data into OSCAR and was concerned with what I saw. From the day I took the machine home until now, my AHI's seem out of control. I typically have an AHI of between 20-30, sometimes 40 and I've NEVER seen a pretty AHI # <1 like many users on here. In addition, the type of apnea's OSCAR is showing are predominately Clear Airway apnea's that scarily resemble Cheyne-Stokes respirations. After doing some major reading on the forums over the last week, I decided to make some changes in the clinical menu of my machine and set it to VAuto. I don't necessarily feel comfortable having done this without the recommendation of those who are more knowledgeable but I also don't have a Dr. to consult right now unfortunately. Since I've tweaked the settings, I've noticed a drop in my overall AHI score but am still having the CA apneas with the Cheyne-Stokes respirations. OSCAR is not labeling them as such but I'm concerned at the thought nonetheless. Here is an example from last week when the machine was set for (12 IPAP/7 EPAP) and another from this week set on VAuto (5-15, PS = 4). What do you guys think? ANY input would be greatly appreciated.

Sorry for the long drawn out post. I just don't want to miss any important pieces!


TL;DR

I am concerned that I'm having central apnea's and Cheyne-Stokes Respirations.


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#2
RE: Worried about Cheyne-Stokes Respirations
You have complex or central sleep apnea and are being treated for the wrong condition. The machine you need is the Resmed Aircurve 10 ASV. The Vauto can only treat obstructive sleep apnea, but the ASV works very differently. The best way to understand the ASV is to request the user manual at the link at the top of this forum page.

The next step is up to you. I think treating your central apnea will finally give you a fighting chance to resolve your insomnia and other problems. How you get there is to talk to your doctor and ask him flat-out if he has expertise in the treatment of central and complex apnea using ASV. Ask this before going in for any appointment. If not, find another doctor that can help. With the new doctor, review your history and results and request a titration from bilevel to ASV. It's obvious you will quickly benefit from ASV therapy and if you have good insurance they will pay for it in accordance with your terms for deductibles an copay. Alternatively, find a Resmed Aircurve 10 ASV in the online marketplace. There are used and new machines available at significantly discounted prices compared to DME suppliers. I'll wait to hear back from you before going further with descriptions of ASV or how to procure.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
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Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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: Worried about Cheyne-Stokes Respirations
Looks like we have a new customer. Welcome to Apnea Board. Sleeprider's already covered what's needed for now. We will get into some really interesting discussions on the ResMed AirCurve ASV soon. You might need a seatbelt.

Signed,
Some guy on the forum that did a bit of self advocacy to make sure he got the ASV
Coffee
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#4
RE: Worried about Cheyne-Stokes Respirations
Thanks for the responses and warm welcome Sleeprider & SarcasticDave94, I appreciate it.

I am definitely not opposed to being my own advocate when it comes to my health. As far as insurance goes, I have an HMO plan which requires me to go through my PCP to do ANYTHING. Surprisingly though, they paid for both sleep studies as well as my current Resmed device (albeit, with the 'compliance' caveat). I have no doubt that with the help of my PCP, I can get them to upgrade me to the ASV machine instead. I have done a fair amount of reading on the ASV machines and had come to the same conclusion but am a bit worried about what 'underlying' issues could be causing these respirations; as I'm sure everyone has googled the implications of Cheyne-Stokes respirations!

Either way, I will go ahead and download the user manual and get to reading! I have a few questions still:

1. Do you have any possible ideas/explanations as to why, during my actual sleep study (attached below) I didn't have any recorded central apnea's but then I get my machine and all of the sudden, that's the major apnea that I'm having? It leads me away from feeling as though my complex sleep apnea is treatment-emergent central sleep apnea.

2. It has been 3 years since my last sleep study and due to the fact that my health insurance is relatively sub par, I've never had a Dr. of any kind managing my BiPAP treatment beyond the day of my sleep studies. Sleeprider, you had mentioned finding a Dr. that has expertise in the treatment of this type of sleep apnea. When I see my PCP, what kind of Dr. should I be asking them to refer me to? To a pulmonologist? Back to the sleep center?

In the event that this process takes longer than I'd like, I may go the route of looking for the Resmed Aircurve 10 ASV in the marketplace but would obviously prefer to not have to pay out-of-pocket if insurance will cover it.

I look forward to getting this taken care of once and for all with your guys' much appreciated guidance!

P.S. - My seatbelt is already strapped!!!


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#5
RE: Worried about Cheyne-Stokes Respirations
If me, I'd begin the conversation with your GP or PCP. Ask this doc a few things including:
Does he or she know about CA?
Would they consider writing the script for the ASV? Order an ASV oriented sleep study?
If not, who do they recommend as a specialist?
Also check your insurance guidelines on who is in-network for this.

It is possible you may need a new sleep study showing CA or mixed events, and one that is with ASV in mind. I myself would consider a new doc/sleep center if you're not convinced the current one has been doing a very good job. IMO an average grade or less for the current and I'm headed elsewhere.

Also probable is the need to have an echocardiogram, an ultrasound of the heart that needs a cardiologist to sign off on the amount of your LVEF - left ventricle ejection fraction. It is presented as a number in percentage form; you will need 45% or higher to pass. I've had to have one specifically for the ASV and a new one recently for other heart issues. This is an easy test that your insurance and the docs will probably require so as to verify the ASV won't cause a heart issue. It may be done at a local hospital within the Imaging Dept. You'll know if you have what they want to test for, which is CHF-congestive heart failure.

Sleep study and no CA or mixed? 1. I think you said it was not recent. 2. CA are notorious for being consistently inconsistent.

More questions? I and others will have answers.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
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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#6
RE: Worried about Cheyne-Stokes Respirations
The central apnea can be idiopathic, which simply puts you in the same category as 99% of other members on this forum that use ASV. No cause is required. No neurology or other scary stuff. Sometimes it is just having a low apneic threshold, so when you use positive pressure therapy to resolve obstructive apnea, it reduces your blood CO2 levels lower and reduces respiratory drive. Whatever the cause, it won't likely be found, and is easily resolved with ASV. The entire sleep industry is geared to treat obstructive sleep apnea, so someone with more complex problems seems to confound a majority of the doctors. There are a few good ones, and the reason for asking your doctor if he has expertise in these matters is that many will tell you they don't recognize CA as a problem. You can't work with "that" guy because no matter what he sees, it is always obstructive apnea. Don't waste your time with a doctor that is not working to solve the problem, and is aware that obstructive and central or complex apnea require a different solution. You have tried CPAP and Bilevel, so you are almost there. Read our Wiki on Justifying Advanced PAP. http://www.apneaboard.com/wiki/index.php...vanced+PAP
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


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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