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NEED ADVICE FOR NEWBIE W NO MACHINE
#1
NEED ADVICE FOR NEWBIE W NO MACHINE
Good Sleep Peoples, Please help!!!! I know I have central sleep apnea.. Unfortunately, had EEG and sleep study and both did not show apnea because I was awake for most of them but as I go through specialist after sleep specialist after cardiologist it has taken a very bad turn. I can't even nap without that electric shock of your body waking you and if it doesn't then I wake up with almost migraines and gasping for breath.

I had my husband watch me when I sleep and he said I have long instances of no breathing. I get maybe 3 - 4 hours of sleep a night. I can't work. I can't drive. I can't do anything. I feel like I am waiting to die. Sad((((((

Besides knowing WHY I have it (I am happy to chase that with the neurologists for the rest of the year) I ABSOLUTELY NEED TO SLEEP. I am fine once I get to REM but NREM is a disaster and opiates, benzos make these events WORSE. Sad(( 

The sleep doc said they would give me a prescription for a machine but 

1. The fitting place can't schedule me for months
2. Unsure if the prescript MUST be for ASV. 

I know this is what I need. How can I get an ASV (money is not an issue ATM bc, well, if I can't sleep or die in my sleep then none of htis matters)??? 

Can I buy one and THEN, after the second and third in-house week-long sleep study happens (can't FREAKING GET IN UNTIL JULY) what are the chances that insurance will reimburse?
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#2
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
ASV machines are not common but you may get lucky and find one on Craigs List, but even then, it may be a bit of a gamble to pay and not get ripped off.
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#3
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
G'day Sleepslayer. Welcome to Apnea Board.

If your doc will give you a prescription, you can buy a machine on-line for (usually) much less than through a DME. Go to the Supplier List at the top of this page for a list of 30 or so on-line suppliers and start searching. Supplier #2 is noted for having "gently used" or new-old-stock machines at very fair prices. Having said that an ASV is going to be expensive, especially if it turns out not to be the machine you need.

I can't comment on the arcane rules of the American medical insurance industry - perhaps some other members can chime in there. But I note you mentioned "week long sleep study". Generally a sleep study is a single night - do you need a longer study because of your inability to sleep during the previous one night study? You might be better off having at at-home study. They're not as comprehensive as an in-house study, but because you're in your own domestic environment they might be more conducive to getting enough sleep for a diagnosis.
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#4
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
There are several resellers (distributors) listed on Amazon that would have access to the Resmed Aircurve 10 ASV and that would not ask for a prescription and would ship in just a couple days.  I can't link to any sales, but you can call them and ask about the price and availability of the ASV.  The top resellers that might help with a discounted price are:
Medguru, LLC  651-355-9044
Sistemma 425-505-3065 

Supplier #2 would be a good source if you have the prescription sorted out, and they can sell both new machines and "lightly used" of the Resmed Aircurve 10 ASV or Resmed S9 Adapt.  I'm not recommending the Philips BiPAP Auto SV because you are self-titrating, and you will need to see the data to effectively set the machine.  For either the Aircurve ASV or Adapt, the following chart is the recommended titration protocol.

Speaking of prescriptions, be sure that your problem is actually central of mixed complex apnea, or the ASV is a complete waste of time and inappropriate for your treatment.

[Image: attachment.php?aid=4210]
Sleeprider
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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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#5
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
Welcome and we will help as much as we can.  I have to ask how do you know you have central apnea?. without question It sounds like you have apnea.

Fred
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#6
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
Hi Fred,

I know we're not here to diagnose and determine, blah, blah :Smilebut I have endergone teats for heart, I do not have anxiety and it (this sleep monster) responds negatively to benzos and Amy type of CNS depressant. It's like adrenaline beyond anything I've ever experienced and then at the same time something isn't.. coming back. It's the worst sensation I've ever experienced and I have it every night/morning. It doesn't happen in R.E.M. That I can tell and bookends my sleep. I wake up in tears and my heart actually hurts. 

I had two surgeries this year (unrelated) and I *think* the anesthesia messed w my brain. I'm a science-based person and I've tried everything. No caffeine. No alcohol. Good sleep hygiene. It's destroying me. This took forever to figure out but I know it in my bones. I know the docs will believe me once I have another test but I don't know if I have that long. Even if I take a NAP it happens. It's as if my brain goes to sleep too. 

I had one sleep study and they want to do it again bc I was awake for most of it. 

I need a machine and fast. I am wary of bad retailers and of course the wrong machine but at the same time I feel like I can't live like this.
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#7
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
My thought would be to get a good used ResMed AutoSet and try that. It will provide clear indication of "Clear Airway" events which are typically Centrals and will provide a good picture (data) of what is happening. Then, if needed, resell your AutoSet for close to what you paid and buy an ASV or other machine (VAuto) as needed.

It could be a cheaper option.

Fred
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#8
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
Your Boulder Craigslist shows a company called Healthstar located in Parker, CO offers a Resmed Airsense 10 Autoset for $599. Might be worth a look. I'm sure they can get the ASV if needed. Might be worth a call. Their contact information is: "Contact us at 720-851-702eightor visit our office at 10230 E Progress lane Parker, CO 80134"
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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#9
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
I agree with others on this. Even though you believe the ASV is definitely the right machine, I personally would try the Autoset first. Post results and the gurus would give pointers on settings. Then post again. This will then clearly indicate how many and of which apneas you really do have. The ASV is a great device, I know because I have one, but it cannot effectively emulate a regular CPAP. By doing the above, you'd make certain you need to pay for an ASV if indicated, and if not, you'd be saving a boatload of money and still be treating the Apneas.

Keep us updated, and best to success.

Coffee
Dave

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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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#10
RE: NEED ADVICE FOR NEWBIE W NO MACHINE
You guys are amazing. THANK YOU so much. I ordered a machine - can't remember which one at the moment because I'm so tired but I will defer to your  collective wisdom once I get some data. For now I am just really anxious about going to sleep tonight because it will happen again. And again until I get something in place. 

This  type of fear and exhaustion is hell. 
Sad
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