Need an ASV Machine or Prescrption

[Woodup]

Help! After 18 months of failed therapy, sleep studies, and thousands of out-of-pocket expenditures for devices and medical bills I beg this communities assistance.

I am looking for a doctor within 2 hours drive of or in the Chicago area who understands and is willing to prescribe me an ASV machine. Or someone willing to part with a used bi-level autoASV machine, preferably Resumed S9 series or later for reasonable $. Are there any recommendations?

Without getting into detail, nothing to this point has worked to resolve my moderate-level sleep apnea. I feel exhausted and horrible every day.

Tried:
APap - feel dizzy/headache, horrible no matter what the settings, even with AHI<1
Auto BiPap - slightly better but still dizzy/headache and lots of centrals, no matter the settings - AHI's from 3 to 10.
Oral Appliance - failed, cannot tolerate, caused active TMJ. Extremely crowded throat anyway.
Positional therapy - this has helped but only slightly.

I find it tragic that two of the largest supposedly reputable sleep clinics and the top-rated sleep hospital in Chicago have offered next to nothing. The small improvement I have made has come from my own research and detailed record keeping/titration efforts. I believe, due to asthma/cop, that my CO2 level fluctuates between too high, due to breath-stacking, and/or too low, due to hyperventilation, thus never stabilizing. The last shot I may have (before going down the radical path of Stanford Protocol), is to see if a bi-level ASV with targeted minute ventilation can improve this. Unfortunately, I can find no doctor in this area who is competent enough in this field and/or willing to properly support this effort.

I'm desperate here, man. This is not life, this is like walking death.

Thank you so much for any assistance you might offer. And my sympathies to my fellow sufferers.

[Julie]

What type of mask do you use and how good do you think the fit is?

[Woodup]

Thank you so much for asking. The first 3 months mask leak rates were unacceptably high. I struggled with APap therapy and thrashed about during sleep, the mask coming off or partially dislodging frequently. I tried 4 different masks: nasal pillow, full face, nasal mask, before finally settling on the Respironics Dream Wear nasal. It stays in place almost every night, leak rates are typically < 1% of the masks rated flow, and I mostly sleep through the night now. I've not been able to achieve better leak rates with any of the other masks. Anyway, Sleepyhead says the leak rates are good for what it's worth.

[Pugsy]

Used ASV machines are pretty scarce.
I don't think forum member grayghost4 has any but I can't remember for sure.
Send him a PM and ask if he has one.
memberlist.php?mode=viewprofile&u=72737
Watch the forum closely....you never know what someone might offer tomorrow. I have seen some that are smoking hot deals..and if you find one be prepared to move on it because it won't last long.
Watch craigslist...I have seen some on craigslist...nothing in my area at this time though...just checked yesterday.

Do you have any history of heart disease? Specifically any history of impaired cardiac function...like congestive heart failure?

[Woodup]

Thank you so much for the great info, Pugsy. Much appreciated! I do not have a history of any heart disease or issues, but may get an echo anyway to confirm my left ejection fraction % would not cause an issue on an ASV. Thank you for mentioning that.

[palerider]

is to see if a bi-level ASV with targeted minute ventilation can improve this.

ASVs don't target any specific minute ventilation... they work to maintain something like 90% of your current minute vent. (and can gradually trail off to nothing as 90% becomes 90% of the previous 90%, repeatedly)

to be able to effectively set a minute vent, you're going to have to go with an iVAPS machine, like the S9 ST-A

[klv329]

0 hour asv s9...$850 ain't cheap. I think he's been on this site before...

https://offerupnow.com/item/detail/1701 ... lower-hr-s

[klv329]

Here is an Aircurve 10 asv asking price 1,000 in San Bernardino , ca
https://inlandempire.craigslist.org/for/5879945291.html


The 36007 doesn't have asvauto (variable epap) and has minimum pressure support of 3 which some dont need.
This is also a 36007 from a person around my area...I told the seller it wasn't worth more than $100...
https://sarasota.craigslist.org/hab/5840279158.html

0 hour asv s9...$850 ain't cheap. I think he's been on this site before..

https://offerupnow.com/item/detail/1701 ... lower-hr-s

[ellee]

Hi. I am selling my Resmed s9 h5i. It will come with the carry bag, power cord, and 1 used disinfected tube and one sealed brand new tube.

I barely used this machine because I was sold this machine and was not properly followed by a doctor. So when I got better insurance I was able to get a better machine followed by an awesome doctor.

Please contact me.

[LSAT]

Might be a good idea to start a new thread that says S9...... for sale.

What model S9? How many run hours on the machine? How much $$ ?

[JimW159]

I don't know if you are committed to a ResMed machine or not, but there is a Respironics System One 50 series Bipap Auto SV Advanced for sale on Los Angeles Craigslist for $499
http://losangeles.craigslist.org/lac/ha ... 69742.html
I know absolutely nothing about how this machine compares in features or performance when compared to your stated preference, but here it is. It shows 2500 blower hours with 239 days use over 4 hours a time.
It may be a good price for a good machine or maybe not, you decide.

[Woodup]

My sincere apologies to everyone for not replying sooner. I’ll do my best to be more timely here in the future, hopefully with something beneficial to others. Between work, travel, the holidays and the two little ones I kept getting off-track with posting and other important things (not to mention OSA negatively affecting all the above).

Also, I'd like to thank everyone who responded with all the helpful info. In particular, LSAT, Pugsy, ellee, JimW159, and klv329 for the links / helpful info related to ASV equipment for sale. Thanks to klv329, I was able to snag an S9 AutoAdapt ASV with 44 hours on it (like new) for a really decent price - thank you so much! If you or someone you know could use a Respironics System One 560P unit with about 9 months of use on it for anyone you know please let me know - it's yours for nothing (though I realize it may not be worth the shipping to Florida). If not I’ll offer it up to the second responder. Auto CPAP did not work for me; just made feel much, much worse. I also picked up a Respironics 960P ASV with 144 hours on it at a fairly decent price from Secondwind, both as a back-up and to experiment with a bit since ASV seems to be what I’ve needed.

The Resmed S9 ASV has started to make some improvement after about a month of therapy, thankfully. Nothing had worked up to this point; APAP, Auto Bi-Level, MAD. I still can’t seem to go above 6 cm of Max. EPAP or I feel nauseous the next day (as well as with >14 cm IPAP), but even below 6 cm EPAP I rarely get over 3-4 obstructive apneas a night. And the average daily AHI has been only around 0.6 with ASV thus far, with zero recorded centrals while on ASV. I’ve begun seeing 5-20 min. periods of fairly high Flow Limitation, though (pretty consistent cut-off/jagged insp. square waves). But with ASV thus far I’ve gotten maybe a 30% reduction in symptoms. I’ll take it – but it’s still a long way up from here. I’m still tired, have low-grade nausea / headache every day, and the raccoon eyes are still there (LOL). Perhaps the ASV needs more time to work its magic.

Now yesterday I tried napping and twice noticed air rushing out of my mouth. I use a Respironics Dreamwear nasal mask, and had taped my mouth shut for a couple months while on Bi-Level to eliminate mouth leaks as a potential problem. I had given up on using a full face previously after having the mask coming off constantly. So last night I pulled the Amara View full mask out of storage and gave it a go. Had a sore throat and some nasal congestion – the beginnings of a virus coming on and never a good thing the entire time I’ve been on CPAP. Needless to say I woke up feeling better than in a long, long time, with very low leakage rate / leak time, and the virus in remission. So a full mask it's gonna be for the foreseeable future. A big thank you to Pugsy and my new Sleep Doc both for bringing up mask leak and type which got me thinking about it again.

It also appears nocturnal movement (sleep fragmentation?) has also significantly decreased on ASV, which may help with the full mask. I’ve worn a NightShift Therapy device since August 2016 - it records position and has an accelerometer that records movement intensity. It also has a haptic feedback motor that provides an extremely irritating buzz to the back of your neck when you go supine. Like strapping a tiny cell phone to your neck. I almost never wake up on my back choking and gasping for air anymore. Previously that happened frequently. I also wear a camelback-type backpack (mountain bikers use them) with a Slumber Bump air bladder positioned vertically inside of it which has also helped tremendously with avoiding the supine position – if the Nightshift data are to be believed (and experimentation has shown it can be).

I also saw a new Sleep doctor last week (neurologist), and after looking at my machine data stated I met the criteria for treatment-emergent central (complex) sleep apnea. I left his office with a prescription for an ASV unit, which was put to use immediately. And orders for testing: Brain MRI - due to my symptoms and related family history of migraines/nausea. A round of blood tests: ABG/O2 Sat, Comp Metabolic Panel, CBC-W Differential. He also mentioned an overnight titration might be beneficial (either Repironics or Resmed ASV, whichever yields better results over the next month) and utilizing capnography to test the breath-stacking / CO2 build-up theory I’ve got in my head – another potential cause of morning nausea. I’ve been trying to locate a DME that rents in-home capnometers, because the doctor’s office hasn’t able to find one yet. I don’t believe those symptoms have been caused by aerophagia as I’ve never experienced associated gas build-up, bloating, or cramping in the morning.

ASV has improved the nausea however, and it’s interesting to note my I:E (Inspiration to Expiration) ratios as reported by SleepyHead are now 1.0:1.5 – 1.0:2.0 vs. almost exactly the opposite (shorter exp. times) while on Bi-Level and APAP. It could just be Respironics vs. Resmed’s I, E data reporting algorithm differences, but it is consistently these new ratios every night on ASV. It will be interesting to see if that changes while on a Respironics 960P ASV.

I’m still getting 5-10 minutes a night of sPO2 desats below 88%, which the new doctor is a bit concerned about. They don’t always align with the large flow limitation instances, either. I’ve started to raise pressure support / max IPAP a bit, up to 13 cm. I was getting nauseous over 14 cm before, but perhaps that was due to mouth leaks and resulting lack of therapy previously.

I also seem to have acquired a nasty case of Tinnitus. I had almost given up on BiPAP in late November 2016 and was taking a week off of it, when promptly upon returning from an overseas flight found I had fairly loud tinnitus, in both ears. It’s ringin’ like crazy 24/7 now - never had it before. Has anyone else here developed tinnitus while on PAP? I read TMJ can cause it and since my Narval MAD recently seems to be causing a minor amount of jaw discomfort, I’m discontinuing it for a month or so to rule that out.

In spite of this crazy ringing in my ears, the arrow finally seems to be pointing upward, however. Thank you all very much for your extremely helpful information (including others who’ve posted re: ASV therapy), and for reading this post. I had thought I’d been run over and left for dead, so to anyone who feels that way: Don’t. Give. Up. Research/read the threads here (and on Apnea Board /others), thoroughly and often – I have found things that worked for me.

And continue searching for a new doctor if yours is not offering solutions that work, or either will not or cannot discuss your therapy in detail with you. In desperation I called around to some of the independent DME’s in my area (NOT the big A), explained my plight, and came up with a few names of doctors they felt had a good reputation. It took 3 months to get an appointment with the current sleep doc, but now that we’ve met and he’s seen what’s going on, he’s getting me back to the office in 3 weeks. And he has no hesitation getting into details of my machine settings and doesn’t get defensive or dismissive by my questioning. Probably because he actually knows what he’s doing, has confidence in his knowledge, and seems genuinely interested in improving my situation. What an upgrade!

Wishing a great 2017 of effective therapy to all!

[Woodup]

Sorry everyone, my use of the term Amara View full in the above was misleading, as I believe there are multiple Amaras. I have the Amara mask which fully covers the mouth, but has a nasal opening cushion built into the top of the mouth mask. Would the term Hybrid fit? The nasal opening looks similar to the Dreamwear's, just oriented 180 degrees opposite; opening to the top instead of from the bottom.

[linuxman]

Sorry everyone, my use of the term Amara View full in the above was misleading, as I believe there are multiple Amaras. I have the Amara mask which fully covers the mouth, but has a nasal opening cushion built into the top of the mouth mask. Would the term Hybrid fit? The nasal opening looks similar to the Dreamwear's, just oriented 180 degrees opposite; opening to the top instead of from the bottom.

There are multiple Amara's, but only one View (and that's the one you describe) so there's no ambiguity about it. That's a full face mask. Hybrids combine a covered mouth area and a nasal pillow.

[raisedfist]

Sounds like you are making progress. /What facilities did you attend previously? I had great experiences at University of Chicago Medicine.