Welcome to Apnea Board !
As a guest, you are limited to certain areas of the board and there are some features you can't use.
To post a message, you must create a free account using a valid email address.
Login or Create an Account
Hi all. New to the board so please forgive me if I make any mistakes with the post, and let me know anything else needed to review.
I've been on CPAP therapy for 20+ years now. ResMed AirSense 10 APAP 9-12 CM EPR1. I was diagnosed with a terminal neuro-progressive condition called Lewy Body Dementia. It's a form of Parkinson's which effects my brain, i.e. it's a neurological condition. Typical life expectancy is 3-8 years.
Home Sleep Study in May came back with 28.9 AHI. In lab was done 8/25, waiting for results. I've been trying to get my Pulmonologist to look at my ResMed data and he can't connect remotely, so no dice. Offered to bring my CPAP in so they can pull from the card...we don't have the ability to do that...just sad.
Look for anyone to review my data. Over the past year, roughly 85-90% of my apneas are Clear Airway (Central Apnea). Some nights I have over 100 of these events. AHI average is 7.8, but highs can be 16. Doctor has prescribe a BiPAP...my research indicated will do nothing to improve my apneas at night. Any insight would be helpful.
My thoughts on this --- that is a lot of Centrals. You should be looking forward to getting a BiPap. The Resmed Aircurve 10 ASV is for treating Central apneas.
Also, read the various links on this site. There is loads of information on here. And one of them explains how to set up your graphs to best help others to help you. Hide the Pie Chart, hide the full calendar. The 3 main graphs to show are Flow Rate, Pressure, and Leaks. Look at the signatures of the more experienced ones, often labeled Advisory Member or something like that, and you'll see various links in their signatures. Those links are good reading.
tdoty821, talk to your pulmonologist or neurologist about referring you for a titration study that evaluates optimum pressure for your CPAP, and includes evaluation of ASV if needed. If you can't get a specialist to pay any attention to you, just talk to your primary general care physician. They are often the most open and best source for a referral like this and more likely to take an interest in your data. Oscar data printed out should be sufficient for any of these doctors that are not equipped to look at your SD card. It appears your neurological condition has progressed to a point that interferes with your spontaneous breathing at night. This could be completely resolved with ASV. I'll be glad to help you pursue alternatives to get you the care and therapy you need. Sorry about your diagnosis.
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.
Everything I've read says ASV is the only thing which will effectively control the CA events. You have an ASV, I assume for CA's. Has it helped you? Did you try BiPAP before that?
I've tried that for months with no success in reducing the CA's. I switched back to straight CPAP at 12 with EPR only on during 30 minute ramp. I'll attach the Oscar screenshot.
Thanks Sleeprider. Any help would be greatly appreciated. I have a pulmonologist appt 8/15 and will bring my machine and laptop to show him the past 12 months of data. It's 90% CA's which really should be a wakeup call for him. I'll let you know.
My first experience with apneas was through my DME, which gave me two home tests. Then they called and said I quit breathing 40 times an hour (30 is considered extreme). Then, a couple of weeks later, I saw my lung doctor (I have lung issues), and I knew there was a sleep study lab in the same complex. So I mentioned the 40 apneas to him -- and he put me into their sleep study. They ended up prescribing me machines, supplied by the DME. And it was the 4th machine that was the ASV. I don't know what the other 3 were. But I'm pretty sure the first one was a CPAP.
But I am doing well with the ASV. Maybe I have a couple of Centrals during the night, and maybe a couple of Hypopneas during the night. My average AHI is below 0.75, and it's mostly hypopneas. I experiment a lot and change pressures for various reasons. I've tried different masks and cushions. Also, I've paid attention to surrounding issues such as black out curtains to keep the sunlight out. It has taken awhile, but I no longer feel like death warmed over during the day.
(08-08-2023, 06:32 PM)Rich66 Wrote: My first experience with apneas was through my DME, which gave me two home tests. Then they called and said I quit breathing 40 times an hour (30 is considered extreme). Then, a couple of weeks later, I saw my lung doctor (I have lung issues), and I knew there was a sleep study lab in the same complex. So I mentioned the 40 apneas to him -- and he put me into their sleep study. They ended up prescribing me machines, supplied by the DME. And it was the 4th machine that was the ASV. I don't know what the other 3 were. But I'm pretty sure the first one was a CPAP.
But I am doing well with the ASV. Maybe I have a couple of Centrals during the night, and maybe a couple of Hypopneas during the night. My average AHI is below 0.75, and it's mostly hypopneas. I experiment a lot and change pressures for various reasons. I've tried different masks and cushions. Also, I've paid attention to surrounding issues such as black out curtains to keep the sunlight out. It has taken awhile, but I no longer feel like death warmed over during the day.
That’s a ton of Centrals in an hour. My worst is about 15-20 in an hour, then I might have 2-3 in the next. Then two hours later 10. I’m assuming it was the ASV machine which really made the difference for you. I’m also light phobic at night. Have blackout curtains and wear eye covers too. Seems like you’re doing much better with your current setup. Thanks for sharing with me ?
Got my sleep study today and it showed I'm only having Central Apneas. They never tried ASV therapy, and were content with BiPAP ST treatment with an AHI of 10+ still having Central Apneas. Just makes no sense to me at all. If I was still having CA's across CPAP, BiPAP, and BiPAP ST no matter how they titrated me, WHY NOT try the ASV therapy while I was there to see if it helped????
Report also showed "The REM latency was prolonged." That seems to indicate even with their prescribed therapy I was NOT getting restful sleep.
Saw my cardiologist today and show him the report. He immediately recommended I have the remedē phrenic nerve stimulator implanted. It would eliminate the need to any PAP therapy as I'm having 1 or 2 OSA a night.
Please review my report and let me know what y'all think. Thanks in advance!!
