BiPAP working but not working?

[AndrewAR]

Hi all,

Newbie here, with a difficult question I can't find the answer to yet.

I'm 48yo. After years of suffering from low energy, mental exhaustion, and increasingly frequent headaches, I was diagnosed with moderate sleep apnea one year ago (I averaged 19 events/hour). I tried a CPAP for 3+ months but it didn't reduce my nightly apnea events. So they switched me to a BiPAP and that did the trick. I now have almost no apnea events while sleeping. Success, right?

Not really. I still feel just as weak, tired, achy, and brain-foggy as I did before. Maybe even worse. I had so much hope that this diagnosis and treatment was what I needed, but now that hopes is fading. I've been sleeping with the BiPAP on almost every night for at least 6 months now. If it was going to improve my symptoms, shouldn't it have done so by now? Should I give it more time or give up on it and go back to the drawing board.

I obviously DO have sleep apnea. Two overnight sleep studies in a lab confirmed it. And the doctor says it is a lifelong condition I was born with, not lifestyle-related. (I've never smoked, am not obese, and don't snore loudly) But addressing and fixing the apnea has not resulted in the promised outcome: Increased mental and physical energy so I can get through my day like a normal, productive person. When I brought this concern up to my sleep doctor a couple months ago, she said to just give it more time. She also prescribed Ritalin as a temporary measure while I wait for the eventual increase in my normal energy levels that the BiPAP is supposed to deliver. But I've already become tolerant to the Ritalin so that I barely notice it's mild energy bump anymore. And I'm afraid to further increase dosage because I don't want to become dangerously addicted to stimulants. I have a lot of the symptoms associated with CFS. Do SA and CFS often coexist? And if so, what can be done about it?

Has anyone else here experienced this disappointment with apnea treatment? What should I do?

[Wulfman...]

Hi all,

Newbie here, with a difficult question I can't find the answer to yet.

I'm 48yo. After years of suffering from low energy, mental exhaustion, and increasingly frequent headaches, I was diagnosed with moderate sleep apnea one year ago (I averaged 19 events/hour). I tried a CPAP for 3+ months but it didn't reduce my nightly apnea events. So they switched me to a BiPAP and that did the trick. I now have almost no apnea events while sleeping. Success, right?

Not really. I still feel just as weak, tired, achy, and brain-foggy as I did before. Maybe even worse. I had so much hope that this diagnosis and treatment was what I needed, but now that hopes is fading. I've been sleeping with the BiPAP on almost every night for at least 6 months now. If it was going to improve my symptoms, shouldn't it have done so by now? Should I give it more time or give up on it and go back to the drawing board.

I obviously DO have sleep apnea. Two overnight sleep studies in a lab confirmed it. And the doctor says it is a lifelong condition I was born with, not lifestyle-related. (I've never smoked, am not obese, and don't snore loudly) But addressing and fixing the apnea has not resulted in the promised outcome: Increased mental and physical energy so I can get through my day like a normal, productive person. When I brought this concern up to my sleep doctor a couple months ago, she said to just give it more time. She also prescribed Ritalin as a temporary measure while I wait for the eventual increase in my normal energy levels that the BiPAP is supposed to deliver. But I've already become tolerant to the Ritalin so that I barely notice it's mild energy bump anymore. And I'm afraid to further increase dosage because I don't want to become dangerously addicted to stimulants. I have a lot of the symptoms associated with CFS. Do SA and CFS often coexist? And if so, what can be done about it?

Has anyone else here experienced this disappointment with apnea treatment? What should I do?

Are you monitoring your therapy with software (like Sleepyhead)? If not, you need to.
Along with that, if your machine settings aren't optimal, or if you're having lots of leaking (at least you're using a full face mask), your therapy is going to take a lot longer to feel like it's working. Again, you need to monitor your therapy and learn to make adjustments.
Many of us realized improvements on a gradual basis, or a longer period of time. Very few of us found instant results. After all, we didn't get this condition overnight, and like you said, many of us have had it a good portion of our lives.

The sooner you take control of your own therapy, the sooner you'll find success. Hang in there.


Den

.

[AndrewAR]

Thanks for the suggestions. My sleep lab and I experimented with several settings over the course of a couple months and found what seems to be the right setting so that I can breathe comfortably through the night. I've been on that setting for at least 4 months. And I'm not having any serious leak issues. I'm averaging 7 hours sleep per night. But I still feel weak and tired almost all the time, no matter how much sleep I got.

Everyone says it can take some time to see results but how long is too long? Aren't you supposed to notice some improvement at least within 3 or 4 months? I haven't. If there is zero noticeable improvement, then there needs to be some point when you throw in the towel and give up on it. Where do you place that point?

As for Sleepyhead software, I don't know what that is or how to use it. Is there a guide somewhere? I searched on the CPAPTalk wiki and nothing came up. If this is a high-tech computer thing, I'm worried I won't be able to figure it out. My brain is so weak and tired now that I usually can't understand complex technical stuff.

[palerider]

Thanks for the suggestions. My sleep lab and I experimented with several settings over the course of a couple months and found what seems to be the right setting so that I can breathe comfortably through the night. I've been on that setting for at least 4 months. And I'm not having any serious leak issues. I'm averaging 7 hours sleep per night. But I still feel weak and tired almost all the time, no matter how much sleep I got.

Everyone says it can take some time to see results but how long is too long? Aren't you supposed to notice some improvement at least within 3 or 4 months? I haven't. If there is zero noticeable improvement, then there needs to be some point when you throw in the towel and give up on it. Where do you place that point?

As for Sleepyhead software, I don't know what that is or how to use it. Is there a guide somewhere? I searched on the CPAPTalk wiki and nothing came up. If this is a high-tech computer thing, I'm worried I won't be able to figure it out. My brain is so weak and tired now that I usually can't understand complex technical stuff.

Have you read that post up at the top of the list of posts, the one that says:

Sticky: Newbies PLEASE READ BEFORE POSTING

[AndrewAR]

Have you read that post up at the top of the list of posts, the one that says:

Sticky: Newbies PLEASE READ BEFORE POSTING

Sorry. I recall starting it but then I just went to the "New Users" icon on the upper right and tried to follow that. Reading the full sticky now, it's a perfect example of the problem I mentioned. There's way more rules than I could ever remember. The complexity is overwhelming. And I'm guaranteed to forget some of them and screw up. To compound the difficulty, when I click the sleep - tnet - .com link that I assume connects me to the Sleepyhead option, I get an "Insecure connection" notice. Why is that and what is the safest way to get around it?

[Pugsy]

To compound the difficulty, when I click the sleep - tnet - .com link that I assume connects me to the Sleepyhead option, I get an "Insecure connection" notice. Why is that and what is the safest way to get around it?

Kelvin who put together the tnet.com website seems to have forgotten to update the security certificate for his website and he seems to be absent. Repeated attempts to contact him haven't worked out. We are hoping he is okay. He is a trusted forum member here.
I compose that thread when the link was working just fine but now it's not.
I fixed those instructions with an alternate link and a different source for how to use SleepyHead.

[AndrewAR]

I fixed those instructions with an alternate link and a different source for how to use SleepyHead.

OK, I removed the SD card from my BiPAP-ASV and inserted it into my windows laptop. Then, I downloaded/installed Sleepyhead. But now it's telling me:

Very Important Warning
ALWAYS write protect CPAP SDCards before inserting them into your computer.
Certain operating systems write index files to the card without asking, which can render your card unreadable by your cpap machine.
As a second line of protection, ALWAYS UNMOUNT the data card properly before removing it!

What do I do? I already inserted the SD card. And what does "write protect" even mean? What does "unmount" mean? This is like reading a foreign language! Did I accidentally destroy my SD card? Is it safe to remove it? HELP!!!

[palerider]

I fixed those instructions with an alternate link and a different source for how to use SleepyHead.

OK, I removed the SD card from my BiPAP-ASV and inserted it into my windows laptop. Then, I downloaded/installed Sleepyhead. But now it's telling me:

Very Important Warning
ALWAYS write protect CPAP SDCards before inserting them into your computer.
Certain operating systems write index files to the card without asking, which can render your card unreadable by your cpap machine.
As a second line of protection, ALWAYS UNMOUNT the data card properly before removing it!

What do I do? I already inserted the SD card. And what does "write protect" even mean? What does "unmount" mean? This is like reading a foreign language! Did I accidentally destroy my SD card? Is it safe to remove it? HELP!!!

Ignore it, old warning, for older machine.

[AndrewAR]

"Remember to properly unmount the SD card from your computer before removing it from the SD slot or card reader. You unmount the SD card the same way you unmount a flash drive or an SD card from a digital camera. "
(from http://www.apneaboard.com/wiki/index.ph ... al_Notes_2 )

What does that mean? "unmount". I've never used a digital camera. I don't know what it's referring to.

[palerider]

"Remember to properly unmount the SD card from your computer before removing it from the SD slot or card reader. You unmount the SD card the same way you unmount a flash drive or an SD card from a digital camera. "
(from http://www.apneaboard.com/wiki/index.ph ... al_Notes_2 )

What does that mean? "unmount". I've never used a digital camera. I don't know what it's referring to.

Right click the icon representing the sd card in your computers file browser, and click 'unmount'.

Or, just pull the thing from the computer and stick it back in the cpap.

[Holden4th]

You have the same machine as me and it is excellent. That said, BiPAP does have its vagaries and the only way to discover if you have covered all the bases is to post your Sleepyhead charts.

I moved myself onto BiPAP over a year ago and it is only recently that I am experiencing the full benefits of the therapy. So let’s see your numbers and decide how we can help you.

[AndrewAR]

BiPAP does have its vagaries and the only way to discover if you have covered all the bases is to post your Sleepyhead charts.

I will try to do that but it will likely take me several days to read through the enormously complex Sleepyhead guide & figure out how to do it.

[AndrewAR]

Ok, it's now over two months later. I did manage to install the sleepyhead app on my computer but I've tried several times to get through the massive instructions at
http://www.apneaboard.com/wiki/index.ph ... d#pid73182
and have been unable to even get a 5th of the way through it. What happens is that as I try to read each section, I almost immediately forget what I read before it. None of the complex technical information is sticking in my brain. There's no way in hell my tired, feeble, foggy brain (in it's current state) could remember such a massive amount of complex data. And the reason for this impairment, the reason the doctors who diagnosed me with Sleep Apnea gave me, is...

Because I have Sleep Apnea!

So how on Earth is everybody else on this forum, who all supposedly have Sleep Apnea themselves, talking about this Sleepyhead program as if it's the easiest thing in the world??? Why are they recommending it as if it's some easy-peasy, simple, no-brainer that anyone can do???

Am I just the stupidest person in the world? Or have I stumbled into some bizarre Twilight Zone where up is down and left is right, and where people with the same impairment I have can somehow perform superhuman feats of mental strength anyway (while assuming that everyone else can magically do the same)?

Please, for the love of god, can somebody tell me what's going on and make some sense of this mysterious nightmare for me?

[palerider]

Ok, it's now over two months later. I did manage to install the sleepyhead app on my computer but I've tried several times to get through the massive instructions at...

Please, for the love of god, can somebody tell me what's going on and make some sense of this mysterious nightmare for me?

Because you're reading a *tutorial* on what it all means, whereas all you need at this point is a "how to post some pics",

go here: wiki/index.php/Sleepyhead:Organize

[babydinosnoreless]

This tired grumpy tech incompent old lady figured it out. I am tired and grumpy enough to say eff directions. Once you have imported the data remove the sd card and put it back where it belongs in your machine. Now you can play with sleephead and your data is safe back in your machine. Click on all the little buttons at the top you can't hurt anything your sd card is safe. One of the clicky things takes you to a place that says that says take a screen shot. Click that, now post the screenshot and let everyone tell you what you did wrong and how to fix it.