Sleep apena misdiagnoses?

[BleepingBeauty]

Well I tried, but I'm blocked at every turn. I don't have the money for this. I'm up to my ears in medical bills I don't know how I'm going to pay as it is.

If your hand hurts because your touching a hot surface, the reasonable conclusion is that you should stop doing that.

Thanks for trying guys but I'm going to do what makes me feel better.

Wow. Five pages worth of good advice, all met with yabbut responses from the OP.

I guess my "yabbut detector" has become pretty sharp, because my radar went off with the very first post in this thread. I bowed out early to save what's left of my sanity. (I have no patience for this kind of crap anymore. )

Kudos to the rest of you who keep trying. I hope all the suggestions made will help another (someone who's actually willing to help themselves).

[Alshain]

Seriously, if my choices are die young or live a miserable life... I choose die young.

What if the choice is to have a miserable life on CPAP or a long, miserable life with debilitating problems like heart damage, stroke, brain damage, etc. without CPAP? That's a lot more likely than a quick, painless death.

You could try putting your machine in auto pressure mode with a range of, for instance 6-10. Or try a higher pressure on manual CPAP. Don't change the pressure too quickly.

I can try that, it's pretty much the only option I have I guess. Would manual be better or APAP?

[Jade]

Alshain, I really feel for you. I, too, am having lots of problems with making cpap serve me in a beneficial way. It can be very hard to create an effective and efficient hierarchy to get out of the woods of Confusion and poor information in the face of atypical responses to treatment.

If the dire scare tactics work for you to help increase motivation to continue trying different things, then by all means use them. Me, I think continuing to seek out good information, trying something different (one thing at a time, not in too-rapid succession, and logging the results), and identifying counsel/advice/support you trust is your best bet. If you need to take a break to gather and strengthen your resources, go for it.

Best wishes to all of us in our journeys, eh?

[archangle]

I can try that, it's pretty much the only option I have I guess. Would manual be better or APAP?

You might try the APAP first to see what happens.

I don't think the old legacy REMstar you have gives you AHI or other useful info on the display, so you'll have to go by how you feel. If you wake up in the night, look at the display and see what pressure you're at. Also, look at the pressure when you wake up. This will give you some idea of what the machine is detecting and autoadjusting your pressure to.

Once you draw some conclusions, you might want to raise the minimum pressure or even go to manual CPAP at a higher pressure. I think that auto may not necessarily automatically adjust you to the correct minimum pressure.

[cflame1]

I don't think the old legacy REMstar you have gives you AHI or other useful info on the display, so you'll have to go by how you feel. If you wake up in the night, look at the display and see what pressure you're at. Also, look at the pressure when you wake up. This will give you some idea of what the machine is detecting and autoadjusting your pressure to.

It doesn't show anything other than the pressure being used at the current time on the display.

[ozze_dollar]

I see you wear a full face mask. I tried one for a month and found it was just horrible. The reason I tried it was because my mouth kept opening. I tried nasal pillows but I have found they are more comfortable but not as stable. I have now settled on a nasal mask with chin strap. I am happy with them. Well as happy as you can be with a mask stuck on your face.Nothing is perfect but thats life isnt it.

[Starlette]

Just adding my 2 cents:

RLS - Anyone with RLS can empathize with you, I can. It's hell to add that too to one's sleep issues. Do whatever it takes to get that under control. Mine is located in my abdomen. So on the nights when its bad, I prop myself up (or sleep sitting up which hasn't happened in a long while) which makes it bearable and off to sleep I go.

Sleep Journal - After I started my sleep journal it took about 3 months of labratting before I figured out what works best for this body.
I have provided a sampling of mine. Good luck.

Starlette

[ozze_dollar]

I started tracking just like the post above and then my Treatment Consultant told me to stop obsessing about my sleep. The biggest problem is people become obsessed with how much sleep they get. He says...."you have a good machine,you are getting optimal treatment,just forget about it now"

OK...I will try that and see how I go.

[BrianinTN]

Some people do obsess over it, I'm sure. But there is a big difference between obsessing and monitoring. The latter is a GOOD THING. And often, those people obsessing do so because of their poor sleep. I think telling people to assume their treatment is appropriate and correct and to ignore the data isn't very responsible. Think of the other medical analogs. Diabetes patients check their insulin at home. Hypertensive people are encouraged to use a home blood pressure monitor. Why should sleep apnea be any different?

[kteague]

My thoughts, probably not worth much ...

- Have your doctor's office request the records. Sometimes that bypasses the fees, as it's considered a professional courtesy. By the way, the doctor who referred you should have a copy of at least the summary in their files.

- Adding an extra strap as a stabilizer is preferrable to tightening the mask to where it's uncomfortable. Just make sure it can't slip and block the vents. Any piece of the headgear that's uncomfortable can be padded for comfort. Maybe a mask liner out of an old t-shirt is something that might provide more comfort too.

- In light of not yet having data, I'd choose an auto range range before experimenting with a fixed pressure. In the absence of an auto option, I'd increase the fixed pressure before I'd keep doing what isn't working.

I'd hate to see you give up on what could be an effective treatment for you before you have a chance to experience it at its best. Suboptimal therapy can be miserable. Been there, done that. Just glad it wasn't my last experience with cpap. Oh, and do you remember if the doctor mentioned anything about limb movements in your studies?

[archangle]

I started tracking just like the post above and then my Treatment Consultant told me to stop obsessing about my sleep. The biggest problem is people become obsessed with how much sleep they get. He says...."you have a good machine,you are getting optimal treatment,just forget about it now"

OK...I will try that and see how I go.

I think some medical professionals are like some car mechanics. They prefer it if their customer doesn't know what's going on and don't ask many questions. It's easier on them that way even if they're honest. It's a lot easier on them if they're dishonest or in the grey zone between.

Of course there are hypochondriacs and some people who do obsess about such things. You have to distinguish between "worrywart" obsessiveness and constructive obsessiveness. Far too many people don't pay attention to their own treatment.

[Alshain]

Well I tried 6-10 last night and the machine never left 6.

[nanwilson]

So now keep that 6-10 posting for a WEEK and see how it goes. If you stay at 6, then you definitely know 6 is your pressure to stay at. Come back next week at this time and tell us the results.

[Emilia]

How do you know it never left 6? I thought you didn't have software or the ability to view your therapy?

[archangle]

So now keep that 6-10 posting for a WEEK and see how it goes. If you stay at 6, then you definitely know 6 is your pressure to stay at. Come back next week at this time and tell us the results.

"Definitely" is too strong a word, but if it stays at 6, that does suggest that 6 is OK.

Just because the machine doesn't auto adjust above 6 doesn't necessarily mean you wouldn't be better at a higher pressure. My machine is happy leaving me at 10 or 11, but I feel much better at 12.