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snoring over new bi-pap , wife cannot sleep
#1
snoring over new bi-pap , wife cannot sleep
I will be writing on behalf of my husband, who had a stroke 7 years ago and has expressive aphasia (inability to talk or write).  He also has congestive heart failure.  He weighs 260 pounds and is 6 feet tall, paralized on his right side and only able to transfer by standing and pivoting from bed, to wheelchair to toilet, etc.  He is on Medicare.

Sleep apnea as well as AFIB contributed to my husband's stroke in 2012, so he has used the same CPAP machine since and has done well.  However we were assigned a new neurologist / sleep specialist after his last one moved.  I told the new guy we got a message "motor life exceeded" on his existing CPAP.  He ordered a new sleep study and insisted my husband has *central sleep apnea* rather than obstructive sleep apnea.  So we were forced to get a new bi-PAP or VPAP (it's been called different names by technologist, respiratory therapist and doctor).   It supposedly forces air only when his brain "forgets" to tell him to breathe, so not blowing all the time.  Without compliance, the new machine will cost us $1,000 plus we will have to pay out of pocket for all supplies.  

We've tried FIVE different masks ranging from his old nasal mask to FOUR different full face masks, combined with a chin strap.  The mask is not leaking around the silicone liner.  His jaw does not drop, so the chin strap seems unnecessary.  He is "puffing" with his lower lip as he exhales, which causes a honking sound so loud it scares our two dogs and wakes me.  We keep trying to meet Medicare's compliance of using this new machine 70% of the time for 4 hours at a time, but I'm becoming sleep deprived.  As his sole caregiver who lifts, bathes, toilets, and sees to his medical needs, I absolutely need at least 6 hours' sleep a night - preferably 7 or 8.  I've also begun to have short bouts of AFIB myself after we go to bed.  I'm certain it's the stress of this.

We only have 1 bedroom.  He sleeps in a hospital bed at the foot of my bed so I can hear him if he needs to use the bathroom or has pain.  So sleeping in another room is not possible.  

We're over a month into this with no resolution to this problem.  We only have another 1 1/2 months to come into Medicare compliance.  I've contacted the sleep center, the machine provider, the respiratory therapist and the neurologist hoping for a solution.  Our family practice doctor who has known us for 20 years says the neurologist could advise Medicare that despite his new diagnosis he should continue to use a regular CPAP as it has served him well for 7 years, but the neurologist refuses saying we must get used to it.  He did have a second sleep study done.  I don't know if it will be covered by Medicare.  I've been using his old CPAP most of the time just so we can get a little sleep, but with the "motor life exceeded" message, I don't know how long it will continue to be useful.  

I'm exhausted.  My dogs are so terrified they pee on the floor the second they see me put the new machine on my husband.   Dont-know

Has anyone had a similar problem who could help us before I have a stroke of my own??
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#2
RE: snoring over new bi-pap , wife cannot sleep
Welcome to the forum rnstuph! I'm sorry to hear about all the health difficulties your husband has, and we will try to help you to understand and manage it. For someone with this level of disability, you are a full-time caretaker, and combined with managing your household, this is very hard. So I'll start with the suggestion that you take care of yourself, and get some "me" time as you need it.

With congestive heart failure (CHF), many individuals develop central apnea and more specifically Cheyne Stokes Respiration CSR). These are serious sleep disordered breathing problems that will not normally respond to CPAP therapy. Your husband's doctors prescribed bilevel (BiPAP) therapy, however even that will not likely resolve the problems you describe, and what he will ultimately require is a higher-end bilevel device, described as bilevel with a backup rate.

We need to determine what machine he is using, the coach you to collect the data from that machine and post it on the forum using the free OSCAR software. This will tell us exactly what a sleep test would, and will identify the types and frequency of apnea, as well as any other breathing disorders. Your husband's condition is challenging, and the most we can hope to do is to give you information that you can use when discussing his therapy with his doctors. Here is the link to OSCAR. Based on your profile, it appears your husband is using a Resmed Aircurve 10 VPAP S, Vauto, or VPAP ST. Your description says "It supposedly forces air only when his brain "forgets" to tell him to breathe, so not blowing all the time." That means he is using the VPAP ST or the ASV. Both are advanced VPAP and we can tell you how it works.

Both ST and ASV are bilevel devices, meaning that they use a lower pressure during exhale and a higher pressure during inhale. This does some of the work of respiration, and if the difference in pressure between inhale and exhale is large enough, it can cause a breath to be taken. The VPAP ST provides the same inhale and exhale pressures all the time and when a central apnea occurs (no spontaneous breathing effort), it switches from exhale to the inhale pressure on a timed basis to maintain respiratory rate. The ASV is an Adaptive Servo Venitlator and is more sophisticated. It also provides a low exhale pressure, but that pressure can vary, increasing automatically to prevent obstructive apnea. The inhale pressure varies on each breath and provides inhale support as much as needed, when needed when spontaneous effort is weak or missing. It also resolves CSR by maintaining the breath volume, as well as the rate.

On all of these machines, there is a small plastic door on the left-side of the machine (you may see a blue tab). Opening that door will reveal a SD memory card or card slot. If there is no SD card, get one from your medical supplier or buy a 4 to 16 gigabyte SD card at Walmart or similar store. It should cost under $10. If your computer does not have a card slot to read a SD card, you may also need to buy a USB card reader. Again inexpensive. This will allow you to get data off that machine that will show us the type of machine, settings, his respiratory statistics and detailed charts of his breathing and any disorders. We can use that information to tell you why things are or are not working and help you to advocate for your husband.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

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#3
RE: snoring over new bi-pap , wife cannot sleep
First of all we need to know what machine you have exactly.
Second thing is downloading and getting familiar with OSCAR.
Third thing is to put an SD card inside your new machine, making sure the small switch on the card is on the 'unlocked' side.

Aside from that ever thought of spinal injections with etanercept? It's a new treatment for stroke patiens.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4110406/
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#4
RE: snoring over new bi-pap , wife cannot sleep
THANK YOU SO MUCH for your response.  The therapist has been willing to work with us, but otherwise we're struggling.

I will try to accumulate the information you mentioned so you have a better idea what equipment we have.  

AGAIN - Thanks!!
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