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[CPAP] 2 weeks on BiPAP - what should I look out for?
#1
2 weeks on BiPAP - what should I look out for?
I'm 22 years old and in my normal weight range. I've had two sleep studies over the last 5 years, the first one should've diagnosed me with UARS (AHI 3.0 and RDI 7.8) and I'm suspicious that the second one didn't score RERAs properly (AHI 3.2 with RERAs listed as 2.3/hour and spontaneous arousals listed as 26.1/hour) based on the results and after they never followed up with me or offered an appointment after my sleep study (I had to call the receptionist a month later to get my results).

Eventually I just looked into buying my own BiPAP and got an AirCurve 10. The first week was rough getting used to wearing the mask and having a lot of clear airway events, but last night I finally got my usage up to 7.5 hours and my RDI down to 0.94. I think my mental fog is starting to clear up and my mood/energy levels are starting to stabilize some, although I'm still more tired than I'd hope. In other words, I'm a little less tired than before but mainly I'm not crashing as hard throughout the day, still no abundance of energy. My libido is still quite low and I'm not seeing a huge difference there. I know that either way, 5 years of sleep debt racks up and it will probably take a while to get back to feeling super normal. However, I do want to get on top of things now and make sure I'm not missing any glaring issues that might still be affecting my sleep, rather than waiting a few months and still feeling bad.

Also probably worth mentioning that I use nasal strips, off-brand Flonase, and just found out about Xlear which I used for the first time last night and helped open my airways up a lot! Any help is great, thank you all so much.

               
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#2
RE: 2 weeks on BiPAP - what should I look out for?
It's looks like you started out using VAuto mode then switched to Vpap-S mode. The S mode graphs look much better number wise with less Clear Airways.

Are you able to post your latest sleep study here in this thread for comparison?
OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#3
RE: 2 weeks on BiPAP - what should I look out for?
That's correct! I started with really wide auto parameters and then had to lessen it down because of really bad aerophagia. And then after the first week I just set it to the median IPAP and EPAP it was giving to me. Central airway events started to go away after getting used to the machine and then I think switching to S mode really helped get rid of them.

I attached the first 3 pages with the main stuff on it, I can also post the rest in another reply if need be! The most concerning things on there, I believe, are the fact that she lists that I have "195 awakenings" and 26.1 spontaneous arousals per hour (203 for the whole study). I think the 195 awakenings was meant to be arousals. I'm not sure how the doctor managed to mix up those words without raising any red flags, but again the doctor never even followed up with me and then left the practice a few months later.


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#4
RE: 2 weeks on BiPAP - what should I look out for?
According to the medical establishment and the insurance companies, with an AHI of 3.2, you are not considered to have Sleep Apnea.  Of course there is a lot they don't take into account, like all those arousals.

Many here have run into the same treatment by their doctors and have self funded their own machines just to get treatment.  So it looks like you are on the right track.  You didn't have centrals on your sleep study, so they will probably settle down in time.  There is a setting on your VAuto called Trigger.  The default setting is Med, but many of us have found that by turning it to the high setting, that the CA's were pretty much taken care of.

If you are feeling good with current setting and it's helped with your Aerophagia, then stay the course for awhile.
OpalRose
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE.  ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA.  INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: 2 weeks on BiPAP - what should I look out for?
Exactly, I wouldn't have sleep apnea. In my original study, I should have been diagnosed with UARS. In this second study, I'm guessing I could have been diagnosed with UARS and I don't particularly trust the facility or the lab tech who scored my study, but I suppose that's neither here nor there now.

I'll take a look at the Trigger setting and see if it does me any good to turn that up, but thanks for checking out my results and giving some feedback!
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#6
RE: 2 weeks on BiPAP - what should I look out for?
I know of only a few practices, specifically Maimonides in Albuquerque, that even recognize UARS exists, and specifically targets its treatment. Insurance companies do not cover it and as a result most sleep clinics and doctors do not assess or diagnose UARS. In fact the accepted diagnostic criteria advocated by most ENTs requires an invasive measurement of airway pressures conducted under anesthesia, and this problem is mostly seen as needing surgical correction. It turns out sleep medicine is not really a science at all, but screening program to limit insurance liability for the issuance of CPAP machines.
Sleeprider
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INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#7
RE: 2 weeks on BiPAP - what should I look out for?
(10-29-2020, 07:52 AM)Sleeprider Wrote: I know of only a few practices, specifically Maimonides in Albuquerque, that even recognize UARS exists, and specifically targets its treatment.  Insurance companies do not cover it and as a result most sleep clinics and doctors do not assess or diagnose UARS.  In fact the accepted diagnostic criteria advocated by most ENTs requires an invasive measurement of airway pressures conducted under anesthesia, and this problem is mostly seen as needing surgical correction.  It turns out sleep medicine is not really a science at all, but screening program to limit insurance liability for the issuance of CPAP machines.

You can say that again.

Honestly, though, I was under a less depressing impression of UARS than you've described here. I thought I'd heard of individuals getting UARS covered by insurance, and my third sleep doctor actually acknowledged that my symptoms and poor sleep might be due to UARS since my AHI was so low and my arousals were so high. But, in so many words, she told me that she thought my previous sleep study was done and scored correctly, but I guess suggested that I was a special case or my RERAs were undetectable by the study. And then told me that she would never ask another practice for their raw data and that I had to do a third sleep study or she wouldn't help me.

I guess, probably like a lot of other people, I'm just confused about how professionals view UARS and what help I'm actually likely to receive. I think my best bet is to return to the same practice that I saw my second doctor at, although I'd have to start with a new doctor at that practice (the doctor I originally saw, the one who did my second sleep study and never actually followed up, left the practice) and they're much further than the third sleep doctor I've started seeing at my PCPs practice.

I'm just worried it won't be worth the time, but after a month of buying and using my own BiLevel and not seeing significant improvements, I'm not sure what else to do.
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#8
RE: 2 weeks on BiPAP - what should I look out for?
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.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#9
RE: 2 weeks on BiPAP - what should I look out for?
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!
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#10
RE: 2 weeks on BiPAP - what should I look out for?
Good post Dormeo! Excellent analysis and insights.
Sleeprider
Apnea Board Moderator
www.ApneaBoard.com

____________________________________________
Download OSCAR Software
Soft Cervical Collar
Optimizing Therapy
Organize your OSCAR Charts
Attaching Files
Mask Primer
How To Deal With Equipment Supplier


INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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