Apnea, no insurance, need advice

[Ultranewb]

I'm about 42 years old, slim, male. I was an engineer, but my job was shipped overseas, thus I have no insurance and little money.

Symptoms started a few months ago. First symptoms were waking up many times in the night with a severely pounding heartbeat - a heartbeat so strong as to literally shake the bed, and I could feel even feel it beating between my back and the bed (if laying on back). So naturally at first I thought I had a heart condition. Then, along with this, I started having episodes where I would literally jump up out of bed from a dead sleep and run around the room, tripping over furniture and what not, before waking up in some kind of panic. So I thought these might be panic attacks. Now, I think I've figured out that what's happening is, I stop breathing while sleeping, and because of lack of oxygen my body goes into panic, thus waking up with pounding heart (adrenaline), jumping up out of bed like a crazy man, etc.

What started me thinking along the lines of apnea is, I have caught myself several times waking where I hear a snore as I'm waking (the snore of course stops instantly as soon as I'm awake), and my throat seems collapsed. And every time where I've "come to" after jumping up and running around the room in my sleep, I've been choking or unable to breathe until I swallow a couple of times, grab a glass of water, etc.

I know little of this condition, and have done little research (just starting now). However, I have several of the symptoms associated with this, such as chronic headaches which started around the same time as these nightly episodes, and high blood pressure which was diagnosed a few years ago.

At this point my sleep has gotten so bad that I haven't slept hardly at all for 4 straight nights (all added together, a couple hours max). I need to go to a doctor about this, and want to, but cost of medical care in the USA is outrageous and I certainly can't afford this without insurance, which I don't have.

Any advice anyone has for me to do this as cheaply as possible would be much appreciated. I have an idea to try to buy one of these machines on my own and just try it. Of course I know I need diagnosis and a sleep study first, but that's just gonna cost thousands I don't have.

Anyway, thanks for any advice.

[NightMonkey]

If you have simple OSA, you can learn to titrate your effective pressure and manage your therapy.

Two important things you need to think about:

- Make sure you get the appropriate machine with software.
- You have no insurance and you think you have undiagnosed sleep apnea. Someday you will have a job and both health insurance and maybe life insurance again. If you go to a doctor and get a diagnosis of sleep apnea it will make insurance very expensive for you in the future.

Get help from the forum on picking the right machine/software and how to titrate and manage your therapy.

[DIY Dude]

Been there, doing that. I have insurance but didn't wish to go through all the hoop jumping, including sleeping over night in a strange place etc etc. I suspected apnea from some of the same symptoms you list and was a confirmed loud snorer from eye-witnesses. So I just went out and bought my own equipment and got started. This is science, but it ain't rocket science. As an engineer I'm sure you'll be up to the task. Here's what I did/got:

Wrote myself a prescription using the standard fax form from our host's website and sent it in with my equipment order (see below). You may not have this option and be dead in the water before you can even start. It's very frustrating that you have to have a prescription when you know you have a problem that would benefit from CPAP. The real danger with these machine is NOT obtaining/using them, so why the need for an Rx for a glorified fan, respirator mask and a humidifier, forms of which are legal for purchase anywhere? I'm afraid it's a bit of a scam. Fortunately for me I'm a healthcare provider in another field. Since you aren't, try to get the Rx from your dentist. That's probably the cheapest and most readily available source of an Rx. Mouth breathing is a co-factor in dental decay and gingivitis. CPAP nasal mask/nasal pillows will assure that you are nose breathing. Leave it at that. No need to get into the apnea/hypopnea aspect of it, which may be beyond his or her scope of practice as a dentist.

Found from here and the internet that the DeVilbiss Intellipap was among the best-rated and by far the cheapest auto cpap machine (automatically adjusts pressure for you making a sleep study and pressure diagnosis by a doctor less important) and bought it from our host site.

Got the integrated humidifier and the optional software package (full $150 version) to monitor myself rather than depend on a health care provider to read my data, all on advice from many here and on other sites. Had a user here email me the clinician's version of my machine's manual so I can go in and change the locked settings in the machine if I need to.

Found one of the highest-rated and cheapest nasal mask in the Respironics Comfortgel and bought that model with special 6 foot light weight hose from another manufacturer (can't remember which) which you'll see it on our host's site as an optional add-on.

Hooked all of the stuff up per directions. Installed software and allowed it to update on the internet to the latest version. I've now been using my auto CPAP for about a week. I had to work up to it because the mask isn't real comfortable given my rather large nose (get pressure welt on bridge of my nose). Downloaded my data from the machine to the computer via the included SD card and am now analyzing it each day and seeing that my apnea/hypopnea index is in the acceptable range and that the pressure I arbitrarily set for myself based on my internet research (8-14 cm) is pretty much in the ballpark of what the machine wants to give me while I sleep. So things are good. I'm into this about $750. My insurance deductible is $250 so really I'm into it about $500 plus my time doing the research. I've spent far less time and hassle that I would have to see my providers and sleep in a strange bed overnight hooked up to sensors. I'd do it again in a heartbeat.

Things I would do differently: Would probably have bought a nasal pillow mask instead of a straight nasal. Again, this has to do with my particular nose shape. I would still recommend the mask I got to an average new user like yourself. It's a good place to start and it was cheap. That's it. No major missteps so far. Happy with everything else. I'm going to give my mask a chance to see if I can adapt to it (already a little better after a week) but if it doesn't happen then I have my eye on another one and will probably pull the trigger on it. There you have it.

[Pugsy]

Cpap machines and masks require RX for online purchases. If you have a general primary care physician that is willing to write the RX that will work. It does not have to be a "sleep doctor". Any medical professional that can write RXs will work. MD, PA, NP or even dentist. With RX you could utilize the cpapauction and get a gently used machine at significant savings. ResMed products won't be found at the auction though. ResMed policy.

Craigslist could be an option if you can find one local. Make sure you are well versed in models. Many craigslists sellers don't fully describe what they are offering or don't know. Most of the machines on craigslist will be either Respironics or Resmed machines. Not all offer data collection so that software use lets you know how well things are going or not.
Both Respironics and ResMed have easily available free software. Older models of both brands require expensive card readers. So for that reason you might limit yourself to the latest models which use a simple SD card for data transfer at worst if your computer doesn't have a SD slot you will need a generic cheap card reader from Walmart about $10.

Those models would be the Respironics PR System One and ResMed S9 series. Then you have to make sure that you understand which machines offer data and which machine do not. Presence of SD card in the machine doesn't guarantee full data. Some machines offer only hours of use on the data card. Avoid any ResMed machine with ESCAPE in it, no full data.
In the Respironics line the PR System One Remstar PLUS, is to be avoided, no full data.

To self diagnose and self treat full data makes things go a whole lot easier. APAP machines will offer variable pressures during the night which could help speed up the selection of the optimal pressure but you could do it with straight cpap machine. It just might take a bit longer to get things dialed in.

Regarding masks. Check out Ebay. While they aren't allowed to sell whole mask setups due to the RX requirement, replacement parts don't have the same restriction and a person can "build their own" mask with the replacement parts purchased separately. You just have to know which parts you need.
The Swift FX that I use has the headgear, a short hose connector and the nasal pillows.

Should you stumble on a really,, really good deal on an older model machine it might be worthwhile to consider the pricey card reader. Just make sure you know what you are getting.

[Gerald]

Ultranewb........

The advice given by the others is first rate......spot on. I can add nothing more. What they are telling you is correct. Because you are an engineer, you'll do well. It'll become a "game" to see how well you can do. I predict that you'll quickly adapt and find the therapy comfortable.

Go for it!

G

[scrapper]

DIY Dude: Wrote myself a prescription using the standard fax form from our host's website and sent it in with my equipment order ....Fortunately for me I'm a healthcare provider in another field.

I do hope that you have a license to write prescriptions.........and that your state board doesn't nick you for self-medicating...........even if it is a "glorified fan". I agree with you to a certain extent, but it's an issue not worth losing a license over or going to jail over.

[Ultranewb]

Thanks for all the advice, it is much appreciated.

Of course needing to have a prescription for this, much less anything else, is just a total scam. You even need prescriptions for contact lenses - EVEN IF YOU JUST WANT COLORED LENSES WITH NO CORRECTION. I don't know why citizens allow the things they do in this country. I lived for many years in Thailand. There is no prescription required for anything you want - you just walk into a pharmacy and buy it.

At any rate, thanks again. I will take all of your advice.

[DIY Dude]

DIY Dude: Wrote myself a prescription using the standard fax form from our host's website and sent it in with my equipment order ....Fortunately for me I'm a healthcare provider in another field.

I do hope that you have a license to write prescriptions.........and that your state board doesn't nick you for self-medicating...........even if it is a "glorified fan". I agree with you to a certain extent, but it's an issue not worth losing a license over or going to jail over.

It's an issue only with controlled substances or with for-profit procurement for resale. CPAP equipment is not a controlled substance and I have no profit angle by restricting my prescription to myself with no reselling option. In other words I actually used my prescribed equipment for myself rather than trying to turn right around and sell it new-in-box on Craigs or ebay at a profit. The board that governs my particular field wouldn't bat an eye given those facts.

[Julie]

One other thing is that apnea is generally worse for most of us if we sleep on our backs and if you can find a way to not do that it may make a big difference while you're waiting to get started. Everything has been tried from sewing tennis balls into the backs of PJ's to some combination of foam pillows, etc. Good luck!

[dwilken]

i too am in the same boat. knew ihad apnea my whole life (55) but couldn't afford to do anything about it. here's what i did. watched cpap machines on ebay, where it is agains their policy to sell them. however.... when they're listed it takes 1/2 a day for them to pull the ad. start watching. when you see one. immediatly bid on it, and send the seller an email warning them the ad will soon be pulled. give them you're email/ph # and tell them you are interested. i did that last year and got a total respironics m series w/ humidifier & full face mask set up for $125. \
i did it again last month for my brother. you can also use craigslist. just search it everyday so you don't have to watch all the listings. i still technically don't know what i'm doing. but i'm sleeping MUCH better. learned how to get into clinicians mode, reset a few things and i'm feeling much better. after a different mask which oddly enough i found at goodwill, i'm $150.oo dollars in. get all my help & info right here. everyone here is GREAT!-dave

[rested gal]

How I got started on cpap:
Jan 25, 2005 subject: not diagnosed yet, many ? brand new here
viewtopic.php?p=5977#p5977
note: Poisson's reply had good reasons why a PSG sleep study is important.

_________________________________________

When choosing a machine:

My list of machines that record "full data" (AHI and leak info) and those that don't -- updated February 2011.
You'll want a machine that can record leak and AHI info. The ones in blue do that; the ones in red do not:
viewtopic.php?p=307168#p307168

______________________________________

Helpful topics to make using CPAP easier:

LINKS to Hose hangers and methods of managing the air hose
viewtopic.php?t=10640

LINKS to: Mouth leaks - Air Leaks - Tape - DIY Guard
viewtopic.php?t=8011

LINKS to Lab Rat Trophy awards
viewtopic.php?t=15104

Topic describing types of machines.
"Whats the differences in BIPAP, XPAP, APAP, CFLEX"
viewtopic.php?p=56836

Links to common abbreviations and definitions.
"Definitions - Abbreviations - Terminology - Acronyms"
viewtopic.php?p=573552#p573552

Great thread started by Moogy.
Oct 30, 2006 subject: Please Share Misc Helpful Hints
viewtopic.php?t=14746

Topic about the "Repti" heat cable to control rainout, started by p2pjunkie
Jan 12, 2008 subject: Cheap heated hose
viewtopic.php?t=27579

Save wear and tear on air hose rubber cuffs:
Picture of elbow connector for hose cuffs
http://www.tnlc.com/Lara/laura/osa/Elbo ... irhose.jpg

Using homemade straps -- useful for stablilizing masks other than just the one shown.
Using one or two homemade straps with the Headrest nasal pillows mask.
http://www.tnlc.com/Lara/laura/osa/aura-strap6ways.jpg

Cutting legs off Pantyhose tights to use as a homemade strap
Score another one for Rested Gal's Pantyhose!
viewtopic.php?p=232922#p232922

DoubleStart Knot How to tie a flat knot behind head when using a homemade strap.
http://www.fieggen.com/shoelace/doublestartknot.htm

[chunkyfrog]

Is this woman not amazing?
You go, RG!

[M.D.Hosehead]

DIY Dude: Wrote myself a prescription using the standard fax form from our host's website and sent it in with my equipment order ....Fortunately for me I'm a healthcare provider in another field.

I do hope that you have a license to write prescriptions.........and that your state board doesn't nick you for self-medicating...........even if it is a "glorified fan". I agree with you to a certain extent, but it's an issue not worth losing a license over or going to jail over.

I wonder what would happen if a person with no license of any kind simply wrote him/herself a prescription and used it to purchase xpap online for his/her own use.
I'm not suggesting anything, just curious.

[SleepingUgly]

I wonder what would happen if a person with no license of any kind simply wrote him/herself a prescription and used it to purchase xpap online for his/her own use. I'm not suggesting anything, just curious.

Usually a prescription would be written on a prescription pad/paper, and it requires a doctor's signature. So what you're asking is "I wonder what would happen if a person with no license of any kind simply FORGED him/herself a prescription..." I assume there is the possibility of being caught and charged. It would be pretty tough to make the case for an insanity defense on a crime like that, wouldn't you say? (e.g., "I was suffering from CPAP withdrawal and believed that I was signing a Mother's Day card to my dead mother. I thought the 'M.D.' stood for Mother's Day...")

[HoseCrusher]

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