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[CPAP] 2 weeks on BiPAP - what should I look out for?
#11
RE: 2 weeks on BiPAP - what should I look out for?
Thanks, Sleeprider!
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#12
RE: 2 weeks on BiPAP - what should I look out for?
(11-12-2020, 05:29 PM)Sleeprider Wrote: Well if you can find a doctor that is interested in helping you get the best possible results, that is gold!  I don't mean to be depressing about anything, except I have observed that "sleep specialists" are worthless dirt-bags that use the sleep practice to supplement income with the expectation that it is easy and every one fits into the same obstructive sleep apnea mold.  They review and sign clinical studies conducted by technicians and sometimes don't even see patients in followups.  There are good ones, but they are not the majority.  Most people with more challenging needs like UARS or quickly find that the medical system does not want to help, and has no protocols to evaluate their problems or provide solutions.  There are exceptions, but at least half of the people that show up here with pulmonary issues or central apnea end up self-treating rather than dealing with the losers that claim to be sleep doctors.

No worries, I think more than being depressing it's just reality. And honestly, it's the reality I've been facing so far. I definitely should've been diagnosed with UARS during my sleep study where I actually had a AHI < 5 and an RDI > 5, but unfortunately I didn't know any better then and my most recent doctor did exactly that, just signed off on the study and never followed up with me. Getting some confirmation on that being the norm is helpful, as I probably just won't head back into see a "sleep specialist" unless it becomes a last resort and self-treatment really isn't working.
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#13
RE: 2 weeks on BiPAP - what should I look out for?
(11-12-2020, 06:45 PM)Dormeo Wrote: I see that the arousals scored in your sleep study were almost all scored as spontaneous rather than respiratory-related.  This means that they might not be related to anything a machine can fix.  On the other hand, a lot of people find that flow limitations can make them more liable to wake up.

I believe that the S mode doesn't allow reporting of flow limitations.  Your FLs were very low for most of the night on the one non-S mode chart you posted, so this aspect of S mode may be inconsequential for you.

A word of warning about Xlear: you're not supposed to use it for more than around 3 days in a row.  Longer and you risk making your symptoms worse or experiencing a rebound effect.  (Flonase is another story; it's fine to use it indefinitely.)

Have you seen an allergist about the nasal congestion?  If it's caused by allergies, the allergist can prescribe other medications to help control symptoms and can talk with you about allergy shots.

I notice that none of your posted sessions were as long as 8 hours.  As you search for improved daytime function, consider trying to sleep for 8 hours a night, with very regular times for going to bed and getting up.

Step back from the details, I think you're doing a great job here, getting a terrific machine with a lot of capabilities for you to explore, finding this forum, and using Oscar.  It can take time to start seeing the full improvement that comes with treatment, so patience will be your friend.

Keep us posted!

I have trouble accepting that all those spontaneous arousals are definitely just that, and weren't possibly scored incorrectly. The report seems (and I say that lightly, because I know I'm not an expert) sloppily written, and despite giving me a RDI of 2.3/hour (I said RERAs in the original post, but meant to say RDI), they reported 0 RERAs in the later charts. But nonetheless, is there any way to treat excessive spontaneous arousals if that were to be the issue? I know a certain amount of spontaneous arousals are mandatory for your brain to function during sleep, but 26.1/hour seems way too high.

That makes a lot of sense haha, I was wondering why/how my flow limitation had dropped and stayed at 0 so easily. Is there a way to get flow limitation recorded during S mode, or should I be using VAuto? Or does it just not matter?

I totally would've thought that would be the opposite for Xlear and Flonase. Xlear is just saline and xylitol, correct? Any idea why it causes rebound congestion?

I've seen an allergist once before a few years ago and found that I was allergic to one specific type of tree, but nothing else on the full general panel allergy test. I might consider going back and seeing about getting more testing done. Thanks for that recommendation.

Sleep hygiene and regularity is actually one of the things I've been doing best lately, honestly. I don't think the reports here really reflected it, but I've been getting a pretty regular 8-10 hours of sleep with the mask on now, which is great. I think I'm actually discovering it's probably the leak rate of me using the P10. I used a Mirage FX the last couple nights (and while it's incredibly uncomfortable) and saw much much lower rates of leaking, and have felt a little better/clearer during the day. I think I need to try a couple new masks and find a better one for comfort and leaking.

Thank you much for the great advice and tips. I'll keep patient and keep you both up to date on the masks I try and how the results are. I really appreciate all the help!
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#14
RE: 2 weeks on BiPAP - what should I look out for?
Sorry, I assumed you were using Xlear Decongestant Spray, which includes oxymetazoline. That's the ingredient that makes it for limited use. That'll teach me to make assumptions!

You need to switch modes to see flow limitations. Try it for a night, why don't you? You can set EPAP min = max if part of what you liked about S mode was the lack of pressure changes. It will also be useful to see whether CAs come back. Do set your EPAP to 4.6 for the best comparison with S mode.

"Spontaneous" arousals are ones where the study didn't identify a likely cause, like respiratory effort. Your index of 26.1/hour is no doubt very disruptive to your sleep, but it's very hard to know how best to resolve the problem. I think you're taking a reasonable approach by getting a machine with good capabilities, studying data, keeping track of how you feel during the day, and getting advice from the likes of Sleeprider.
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#15
RE: 2 weeks on BiPAP - what should I look out for?
(11-14-2020, 01:17 PM)paulm14 Wrote:
(11-12-2020, 06:45 PM)Dormeo Wrote: A word of warning about Xlear: you're not supposed to use it for more than around 3 days in a row.  Longer and you risk making your symptoms worse or experiencing a rebound effect.  (Flonase is another story; it's fine to use it indefinitely.)


I totally would've thought that would be the opposite for Xlear and Flonase. Xlear is just saline and xylitol, correct? Any idea why it causes rebound congestion?


I have been using Xlear (as needed) for almost 7 years with absolutely no negative effect, certainly no rebound effect.
Before using, I questioned my ENT specialist and he said it was safe to use.  This is just saline and xylitol, and does not require a prescription.

I have been checking further to see if there are any warnings that I'm not aware of, and haven't found it yet!  
If there is a warning about not using for more than 3 days in a row, I would love to see that article and it's source.  
I'm not saying there isn't such a warning, but I've never seen one.  With that said, I'm somewhat careful not to use any OTC product on a continual basis.  Sometimes it's good to switch on and off and try something else.

Another thing to keep in mind for congestion is to use a nasal rinse, not the neti pot, but the squeeze bottle.
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