In desperate need of advice!

[Guest]

Hello everyone!

I ran into this forum tonight browsing the web. I have decided that I want to start using a CPAP machine because I need it very badly.

In 2009, I had a car accident that left me in a wheelchair for a whole year. It was due to me falling asleep on my way to work. Prior to the incident, I had the hardest time staying awake and I would doze off when driving or even sitting down. When I was in the hospital, I got a referral for a sleep study, but I could not fall asleep during it and therefore I was not diagnosed with Sleep Apnea. Being out of work all that time, allowed me to get plenty of sleep and rest, so I thought I had gotten over the being tired all the time part, although I still snore louder than a freight train.

For the last month or so, I have started to develop the excessive being sleepy part. I can just sit down anywhere and doze off. I have driven off the road pretty much everyday and tonight coming back from work, I almost hit a park off the interstate because I dozed off and I over corrected on time, truth is, that was my "I need to do something about it" call and quit playing stupid because I really need help before I kill myself driving or kill someone due to my own stupidity.

When I got home tonight, I called a sleep study center but they were closed. Here's where I need some help or advise from you all. I have no medical insurance so I don't know how to go about this. I looked on e-bay and craigslist and I saw that some people sell these machines with no prescription so I thought about just buying one or buy medical insurance and then do the sleep study, then buying it, then again, looking through insurances, I don't know whether they will cover the sleep study or not so if someone might be gentle enough to point me on a place that will sell me insurance that will help me with the sleep apnea stuff, I would be grateful. I am in the state of South Carolina. Another way I thought of doing, would be to get the sleep study over with, get payment arrangements to pay it and then buy the machine used or even renting one for 100 dollars a month... I just don't know what to do. I think I have about 1500 dollars saved up that I was planning on using to travel to see my family in December but at this point, screw the trip.. I really need to take care of this before like I said, I kill myself or kill someone innocent because of my negligence.

Please advice on how you would do this...! Thanks guys...! Trust me, I feel what you all are going through... it's hard!

-RedJohn

[djhall]

I can't advise you on what to do. I can, however, tell you what I did. I was in the same situation as you.... fairly certain I had sleep apnea from waking up tired and getting tireder through the day and from people who would tell me that I stop breathing when I fell asleep in chairs and couches. Like you, I am uninsured. I shopped craigslist until I found an AUTO machine (data recording capability is absolutely essential, and I'd recommend an auto machine if you are self-treating) with a suitable mask that was for sale for $100. I purchased it, cleaned everything well, set it to a low setting, and let it record my data for the night.

Severe apnea is an AHI over 30. The machine said I had an 82.2 for that night. I switched to auto mode, let the machine determine what I needed, and woke up with a single digit number and the feeling that I was actually rested and had energy. I was convinced I had severe sleep apnea at that point. I spent about two weeks learning more about what I would want and need long term, decided I wanted a better level of machine, and I upgraded a few weeks later to a Philips Respironics System One BiPAP Auto with heated humidifier and a couple extra masks for $400. That was about a month ago. I am still learning about what works best and what doesn't work as well for me, but I am between 2 and 4 for my AHI most nights and working on getting it as low as practical for my particular body.

It isn't the ideal way to do it, you might not get it right the first time (you may need a bipap or an ASV), you will probably have to spend a lot of time learning how to interpret and analyze sleep data, you will probably spend a lot of time trying to figure out how to sleep with a mask on, stopping your mask from leaking, keeping your from getting in the way, and you might find you have complex sleep apnea or periodic limb movement, or some other complicating factor that makes self-diagnosis and treatment very difficult to do effectively. You may buy a machine just to find out you don't have sleep apnea. However, you may also find you bought a machine and learned how to treat yourself for less than the cost of just a sleep study.

The least expensive alternative I know of is to find a doctor that would let you do a home sleep study which can cost as little as $300, write you a prescription, and then purchase your machine from an online supplier for anywhere from $300 - $900. The whole cost with home study, follow up doctor visit, and inexpensive cpap and mask purchased new online https://www.cpap.com/productpage/resmar ... ducts.html could potentially cost as little as $750 while still having a legitimate diagnosis and prescription.

[kaiasgram]

RedJohn, welcome. Individual insurance might be difficult to get if you have any pre-existing condition(s). In 2014 that will change. Hopefully folks living closer to where you are might have some ideas about insurance but you may have to do some phone and online research too. Many insurance plans do cover sleep studies. Many also cover DME (durable medical equipment including cpap), some do not.

Some hospitals offer financial assistance programs for uninsured and underinsured (out here Stanford Hospital is an example). Check into that as a possibility too. If that worked out you could get your sleep study, get the prescription for your machine, and then go to a reputable used machine seller like secondwindcpap.com. The American Sleep Apnea Association has an assistance program for machines though it looks like the program is on hiatus until September: http://www.donatedcpap.org/ In both of these cases you would need to have a prescription for the machine.

What's the closest hospital in your area that has an accredited sleep center? Here's an online directory you can search: http://www.sleepeducation.com/find-a-center

A few people have come onto this forum uninsured but knowing they have obstructive sleep apnea, and they have managed to buy a used machine and find their best pressure settings without having gone through a sleep study at all. They use software and the help of the good people here to get their PAP therapy optimized. Look up forum member dos coyotes as an example, and there are others. Obviously that is not the ideal way to go about it, but some of these folks would not otherwise have gotten their sleep apnea treated at all.

I hope this helps as a starting point. Consider registering on the forum and people will go out of their way to offer suggestions and help to get you on your way.

Edit: Thanks djhall, I forgot to mention home testing as another option -- less expensive than an overnight sleep study in a lab.

[racprops]

Where are you located??

I fought my way thought two sleep studies and a poor Doctor and ended up working out my final problem by myself, I have complex sleep apnea where a steady pressure CAUSES MORE apneas.. so had to get a ASV machine then figured out I also have positional apneas that are sky high if I get flat on my back and nearly none if I can keep myself on my side.

If you want more of my battle you can search my name for my threads...

Yours sound even worst than mine, I did not have such a problem falling asleep at the wheel or at home, sounds really bad.

Sadly there is a problem called Narcolepsy: see http://en.wikipedia.org/wiki/Narcolepsy often called Nap attacks...

Here in Phoenix I ended up getting a Quad bypass at John C. Lincoln hospitable and they were willing to give me very low prices...

But I had to go to a Sleep Doctor for my sleep studies...

Rich

[Pugsy]

Please register here at the forum so members can send you private messages.

There is a way to self diagnose and self treat. Several forum members have done it. Is it ideal? Of course not but it can be done.
You would need to educate yourself and get a machine that offers full data and software use so you can evaluate the results...
so also you need to know your machines and on craigslist a lot of those machines won't do what you would need.
They are either old technology machines or machines that don't gather data or software is impossible to get.

Start your education with this thread.
http://maskarrayed.wordpress.com/

Narrow your machine search to specific models that offer the latest technology.
ResMed S9.....either the S9 Elite or S9 AutoSet...avoid anything with Escape in the name.

Phillips Respironics...the new System One machines...model number 450 or higher...the lower numbered models have a SD card but only gather hours of use data which is useless to you.

If in doubt...send me a private message to what you have found and I can check it out.

[BlackSpinner]

There are test you can take at home that cost about $300 and are scored professionally. These test can be taken to any doctor to get a prescription.

[CpapWife]

Consider buying an oximeter to measure your oxygen saturation rate (one of the goals of a cpap/apap is to get more oxygen into you. The other is to lower the interruptions to your sleep.
An Oximeter can give conformation you are not getting enough oxygen during sleep but do during the day.

I found one straight from the manufacturer for about $112.00 (including shipping). The one with the line from your finger to your wrist is more comfortable to wear but might have more errors when the probe gets wiggled.
Here is a thread where I got one recently: viewtopic.php?f=1&t=90926&p=836744&hili ... ay#p836744

I highly recommend an APAP, one of the newer models with better software (not older than 2010 ish). But check brands and models - there are threads here that talk about the better machines. With an APAP you can adjust settings over time as things change for you (you will need to get the secret handshake to get into the tech settings) and the newer models will give you software to help you figure out what setting works best for you.. You can use an oximeter and apap and a chunk of time to learn about them and tweak them to what works for you and in my recent experience that is much better than a sleep study [my husband's latest sleep study made things a lot worse and took us 5 months to say forget the Dr and get him back to an auto setting, an oximeter proved to the Dr his lab was not correct]. We are using both tools to fine tune, big steps up just by getting back on autopap (apap) but we still have a little bit to improve.

Find a good DME for mask fitting as you can't just pick one up like you can an apap machine.

[Pugsy]

Find a good DME for mask fitting as you can't just pick one up like you can an apap machine.

DMEs will require a written RX copy before they will do anything about selling a person a mask.
Of course that RX can come from anyone who can write a RX...doesn't have to be from just a sleep doctor.
Buying a mask without a RX can be done but takes some ingenuity and again knowing which parts to buy.

[racprops]

I got a free home study from a Dentist...

It is not complete but I did show I had a problem...

Rich

[RedJohn]

It isn't the ideal way to do it, you might not get it right the first time (you may need a bipap or an ASV), .

That's what I was thinking about actually. Buy one of those online that automatically regulate the amount of air that it supplies.

RedJohn, welcome.

What's the closest hospital in your area that has an accredited sleep center? Here's an online directory you can search: http://www.sleepeducation.com/find-a-center

Thank you!

The link will come in handy. I will inquire about the sleep study tomorrow and see if they would let me make payment arrangements. If not, I will try to see if someone would be willing to help me since my income is not the greatest in the world.

Where are you located??

Yours sound even worst than mine, I did not have such a problem falling asleep at the wheel or at home, sounds really bad.

I am in South Carolina. Yeah man, it's pretty bad. Sometimes when I'm at work sitting down in the chair, I doze off. My coworkers make fun of me but they know I have sleep apnea. I took a nap the other day and one of them told me she was worried that I was going to stop breathing because they say I do it constantly and I also snore really, really loud. The tissue around my neck does not help either. Sometimes when I breathe, I make snoring sounds when I am awake and they'll look at me grinning thinking I am asleep... it's horrible!

It isn't the ideal way to do it, you might not get it right the first time (you may need a bipap or an ASV), .

That's what I was thinking about actually. Buy one of those online that automatically regulate the amount of air that it supplies.

RedJohn, welcome.

What's the closest hospital in your area that has an accredited sleep center? Here's an online directory you can search: http://www.sleepeducation.com/find-a-center

Thank you!

The link will come in handy. I will inquire about the sleep study tomorrow and see if they would let me make payment arrangements. If not, I will try to see if someone would be willing to help me since my income is not the greatest in the world.

Where are you located??

Yours sound even worst than mine, I did not have such a problem falling asleep at the wheel or at home, sounds really bad.

I am in South Carolina. Yeah man, it's pretty bad. Sometimes when I'm at work sitting down in the chair, I doze off. My coworkers make fun of me but they know I have sleep apnea. I took a nap the other day and one of them told me she was worried that I was going to stop breathing because they say I do it constantly and I also snore really, really loud. The tissue around my neck does not help either. Sometimes when I breathe, I make snoring sounds when I am awake and they'll look at me grinning thinking I am asleep... it's horrible!

Please register here at the forum so members can send you private messages.

I did last night, but somehow the thread published with me being a guest

There are test you can take at home that cost about $300 and are scored professionally. These test can be taken to any doctor to get a prescription.

I might look into this possibility according to what the sleep study center tells me tomorrow; I am also thinking about getting insurance like the blue cross thing, but I don't know what to get. I need to get someone that knows what to get that's best.

I really appreciate all your replies!

In 2009 when I had the wreck, I stayed at my mom's house and my mother in law had a CPAP machine she let me use. I was able to fall asleep with it and family members told me the snoring went away and i was Oh so refreshed in the daytime however she had to take it back. I have been fine all this time, just dealing with the loud snoring which is embarrassing as hell, but I was still able to function well during the day. Now I can't function normal anymore because I guess I am so sleep deprived; I drink a high amount of energy drinks to be able to function and even then, I doze off at the weirdest of times... it's weird how it does... it comes and goes.. it's horrible

I just want to be able to function normal and lose weight. I have put on 60 lobs since 2010 and I strongly suspect it's the sleep part that has contributed to it because I am pretty active and stand and walk at least 8-9 hours a day.

RedJohn

[oak]

Redjohn, I just wanted to wish you the best of luck. Keep us posted on your journey. I have found that people here are really, really helpful with even the smallest of questions. Hang in there!

[RedJohn]

Thanks!

Well, the sleep study thing is 2600 dollars. I can pay 1400 dollars to have it done, then obviously I won't have money left to buy a machine.

I am trying to stay positive but it's easier to give up and just take it a day at the time like I was before. Oh well.

-RedJohn

[SleepDisturbed]

I think that the American Sleep Apnea Association has some assistance programs. You might go to their web site and check it out.

[ughwhatname]

I think that the American Sleep Apnea Association has some assistance programs. You might go to their web site and check it out.

Found this on their site under Diagnosis and Testing:

Test Yourself
If you think you may suffer from obstructive sleep apnea or some other sleep breathing disorder, there are several simple tests you can take that may suggest you should discuss the possibility with your health care provider. Remember, though, that one of the best tests may be a complaint by your bed partner that you snore loudly or that you stop breathing repeatedly while you're asleep.

Four tests that you can take right now are the American Sleep Apnea Association's own Snore Score, the Epworth Sleepiness Scale, and the Berlin Sleep Questionnaire. STOP-BANG asks for you to enter your body-mass index. If you don't know what your BMI is, the National Heart Lung and Blood Institute will help you calculate it.

Click for information on STOP-BANG

[Sir NoddinOff]

I say go with the home sleep study, then come back here and post the results. You will have an Rx and will be able to tap into the wisdom of some of the senior members... IMO, probably as good or better than a lot of sleep doctors on the prowl for inflated profits from sleep studies and bed-mate DMEs.