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I really think my sleep apnea is killing me. :(
#1
Sad 
So... It's been a long journey with OSA. Diagnosed in 2010. CPAP worked for about 2 years... Then just kinda stopped working. I haven't had insurance in almost 4 years. My work doesn't provide insurance. I don't make enough to afford a personal plan, but I make too much to qualify for government assistance. I applied for Obamacare a few years back, but my only options were over $250 per month. I decided out of desperation to enroll in the cheapest plan they had, which was right around $255 per month. I tried for several months to find doctors to help me, but of course no one wanted to accept my insurance since obamacare is generally frowned upon in the insurance world. I gave up the insurance, and haven't been able to get any since. Most days, I feel like I'm on the brink of passing out at any given moment. I get this intense pressure behind my eyes, and I feel like I could fall asleep at any moment. The dizziness and fatigue cause panic attacks... And those feelings essentially cycle around and around until it's time to go to sleep. I have a very physically challenging job, and I'm really just afraid my body is going to give up on me and I'll end up in the hospital. My heart beats erratically sometimes, and I have a general sense that I'm just not okay. I exercise regularly, and I eat healthy as often as I can. I'm currently 5'10", and around 190lbs. 31 years old.

At this point, I truly feel like my body is about to give up on me. Every day is a massive struggle. I have no medical options. I've been told I need my tonsils out, but affording a $10000 surgery just isn't possible. I really just feel like I'm waiting to die... And it's really sad. I have so much I want to do and accomplish in life, but most days, all I want to do is stay in bed and sleep. I never feel rested. I never feel refreshed. I never feel okay. Most mornings, I wake up so exhausted that I just wish I had died in my sleep so I don't have to deal with this anymore. I'm only 31, yet I feel like an old man. This illness has taken a toll on every aspect of my life. My memory is failing. My heart is failing. I honestly just don't want to do it anymore.

I didn't write all this out to be a sob story. I just needed to vent. Maybe having some people to talk to would be a small comfort. Sleep apnea has ruined my life.
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#2
Do you still have your machine?
If so, have you ever tried reading the data on your SD card using the Sleepyhead software (free, link at the top of this page).

You say it stopped working, but that rarely happens. You have (had) a fixed pressure Resmed S9 Elite, and it produces data. If you can access that, there is a good chance we can guide you on what went wrong.

Get back on the machine. Nothing good is going to happen until you do.

Edit: I missed that you were using an older machine that is difficult to access data. We can help you to source an economical, modern replacement for much less money than you might expect. It would help if you have a copy of your prescription, and perhaps your sleep study.
______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
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#3
So sorry to hear this.

Are you still trying to use the CPAP? I am assuming by the Machine description you show in your profile that you're talking about a ResMed S-8 Elite II? That machine should have some data reporting capabilities, but it requires a special memory card and reader. On a quick goole search, I found the readers available for about $60 but I was unable to quickly find cards (not that somebody doesn't have them, just that I didn't find that somebody).

Given that, am I correct in assuming that you have not pulled any data off the machine for analysis? Am I also correct in assuming that your pressures have never been adjusted since you started therapy?

That is something you need to do right now to see what's happening while you are "asleep". If you are in a position to, a new machine is probably in order. If you have been using the old one every night for 5-6 years, it is probably approaching the end of its mechanical life anyway. Did you by any chance get a copy of the doctor's prescription when you got your machine? Can you get a copy of the original script from the doc? From the DME that gave you the machine? Know somebody that's a doctor, a PA, a dentist, a podiatrist, a chiropractor or voodoo priestess that could write you one? (seriously, the last three probably won't work) Supplier #2 has a good supply of new and gently used machines for a really good price. Also, since the introduction of Respironics' DreamStation, the prices on their older line (the 60 Series) has come down. (Check your Private Messages at the top of the page...) If you are able to go the route of buying a new machine, you need one that is fully data capable (not the basic compliance data) and would probably do better with one that is an auto-titrating machine, not a straight CPAP.
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#4
Welcome. You sound not unlike me early this year. I was at the end of my rope. You need to do something.

If CPAP stopped working, something changed. Maybe it is just getting older, maybe you gained weight, changed medications, developed allergies, the mask wore out, the machine is not working properly, something. Let's figure it out.

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#5
Thank you guys for responding. It means a lot to me. I have a lot of questions to answer from multiple responses, so I'll address in the order they came in.

Yes, I do still have the machine, and no, I've never tried reading the data myself. I also don't have my prescription since it was almost 6 years ago (not sure how to get a copy of it), and I also don't have a copy of my sleep study results.

I do still attempt to use my machine, however, it is almost entirely ineffective. I feel about the same whether I use it or not, but lately, I've been feeling worse on nights I use the machine. Usually very dizzy the entire next day after using it. Yes, it is the RedMed S8 Elite II. After looking through my CPAP carrying bag, I was able to find the memory card that came with it (I honestly didn't even know it was there). I am interested to see what data I can retrieve from the machine. I was able to find the card reader you spoke of...looks like it's about $55? But no, I have not pulled any data off the machine since I first got it. My pressures have been adjusted a few times, but I did it myself in an attempt to fix the fact that I no longer benefited from the machine. I never changed the pressure more than a few 0.x increments from the original prescription. It has always been somewhere between 9.0 and 9.8. I'm not 100% sure how to get a copy of the prescription. Is that even something I can do? Right now, I'm not in a position financially to buy a new machine...but that may change in a few months. I'm waiting for my job to get busier so I can make more $.

I should also note that I've never replaced the mask or tubing either. Since I don't have insurance, I don't have any way to get replacements. My mirage mask fits tightly on my face still, but that's only because I've been able to rug it with some duct tape. (stupid, I know...but it works)

I inserted that data card into the back of the machine, and it said it copied the data over successfully, so now I just need a card reader I suppose. Not sure what software I should use to analyze the data either.
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#6
Good to see you back again. If you can contact your doctor from when you got the machine, they should be able to give you a copy of your study and prescription. I have no idea if they will want to charge you.

Is your McGyvered mask leaking? That would affect how effective the therapy is.

See the top of the page for a link to SleepyHead, which is what most of us use to look at the data. It is free and good.
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#7
Hi mosesport,
WELCOME! to the forum.!
I know you are having a rough time of things right now, but I want to encourage you to keep trying, don't give up.
I know you say you can't get a newer machine right now but hopefully, you can find a way to get one eventually, you would be better served by the newer technology of the newer machines. But, for now, I know you need to work with what you have. If you are having to duct tape your mask together to use it, you probably have some mask leaking going on. Would you be able to at least get a mask so you can at least use your machine? I'm not trying to pressure you, just trying to help.
I wish you good luck, hang in there for more responses to your post, and don't give up.
trish6hundred
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#8
New auto machines can be had for about $400, and if you know what you're doing in the used market, you can get one for less. New masks can be had for around $100. It's a lot of money, but your health is worth it, and it's about half of the discount retail value. I can point you the right direction, if you can swing it.

As mentioned, your original doctor (if he is still around) must provide any copies of records and prescriptions. If you ask nice, he might even update it. Worst case, most physicians will write the script based on an appointment and interview, especially if you take in your old machine and mask to discuss options. It does not need to be a sleep specialist, but ask before you book an appointment.
______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
Reply
#9
(06-16-2016, 08:27 PM)mosesport Wrote: Thank you guys for responding. It means a lot to me. I have a lot of questions to answer from multiple responses, so I'll address in the order they came in.

Yes, I do still have the machine, and no, I've never tried reading the data myself. I also don't have my prescription since it was almost 6 years ago (not sure how to get a copy of it), and I also don't have a copy of my sleep study results.

I do still attempt to use my machine, however, it is almost entirely ineffective. I feel about the same whether I use it or not, but lately, I've been feeling worse on nights I use the machine. Usually very dizzy the entire next day after using it. Yes, it is the RedMed S8 Elite II. After looking through my CPAP carrying bag, I was able to find the memory card that came with it (I honestly didn't even know it was there). I am interested to see what data I can retrieve from the machine. I was able to find the card reader you spoke of...looks like it's about $55? But no, I have not pulled any data off the machine since I first got it. My pressures have been adjusted a few times, but I did it myself in an attempt to fix the fact that I no longer benefited from the machine. I never changed the pressure more than a few 0.x increments from the original prescription. It has always been somewhere between 9.0 and 9.8. I'm not 100% sure how to get a copy of the prescription. Is that even something I can do? Right now, I'm not in a position financially to buy a new machine...but that may change in a few months. I'm waiting for my job to get busier so I can make more $.

I should also note that I've never replaced the mask or tubing either. Since I don't have insurance, I don't have any way to get replacements. My mirage mask fits tightly on my face still, but that's only because I've been able to rug it with some duct tape. (stupid, I know...but it works)

I inserted that data card into the back of the machine, and it said it copied the data over successfully, so now I just need a card reader I suppose. Not sure what software I should use to analyze the data either.

The card reader is a lot cheaper than a new machine. There's a chance you just need to do something simple like up the minimum pressure. And if you do get a new machine, you will still want a card reader to analyze how well it's working.

Your machine now might even be fine. We'd (well the propellerheads on the forum, not me) need to see the data no matter what.
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#10
(06-17-2016, 05:45 AM)Weird Tolkienish Figure Wrote: The card reader is a lot cheaper than a new machine. There's a chance you just need to do something simple like up the minimum pressure. And if you do get a new machine, you will still want a card reader to analyze how well it's working.

Your machine now might even be fine. We'd (well the propellerheads on the forum, not me) need to see the data no matter what.

WTF, actually the Resmed smartcard reader for the S8 costs about $55 plus shipping, and is money probably better spent elsewhere than a legacy machine. The S8 does not distinguish between clear and obstructive apnea, and that distinction would be one of the more important ones to determine.

[Image: bert1.jpg]
______________________________________________
Organize your SleepyHead Data
Post your SleepyHead Data from Imgur
Robysue's Beginner's Guide to Sleepyhead
Reply


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