Patrol the hospital halls

[Rubicon]

Throwing in my 2 cents.

My Stopbang score at the time of my OSA diagnosis was something like a 2. Yeah, a 2. Low risk.

But my husband told me I snored and that he was pretty sure he'd seen me stop breathing at night. And he was alarmed about that.

Soon as I told my PCP "my husband says I snore and he thinks he's seen me stop breathing", my PCP immediately ordered a sleep test. I had no daytime sleepiness, no brain fog, no exceptional headaches, I was a 5'1" female who weighed 108 lbs. Fortunately my PCP took the fact that my husband said he thought I stopped breathing at night seriously: My diagnostic AHI was 23.

My 2 points on Stopbang? Snoring and witnessed apneas.

Seems to me that "witnessed apneas" ought to weigh a whole, whole lot more than being male or being overweight.

So let me ask a question.

It pertains to your lack of symptoms and NPSG results:

viewtopic.php?f=1&t=55636&p=520725#p520725

And for this I'd like you to put on your pragmaticest hat.

Yaggi says it's only if you have severe OSA that you're gonna die.

That said, was this trip worth it?

[Rubicon]

It pertains to your lack of symptoms and NPSG results:

viewtopic.php?f=1&t=55636&p=520725#p520725

And looking at The Numbers, was a diagnosis of Moderate Sleep Apnea warranted, or would UARS have been more appropriate?

And does UARS even exist?

Do you need EDS in order to have UARS?

[Rubicon]

And looking at The Numbers, was a diagnosis of Moderate Sleep Apnea warranted, or would UARS have been more appropriate?

But I guess we've been down this road before.

Twice, AAMOF.

[Rubicon]

But IMO it's a good discussion to raise, because if that's the case, your STOPBANG is spot on.

[robysue1]

Throwing in my 2 cents.

My Stopbang score at the time of my OSA diagnosis was something like a 2. Yeah, a 2. Low risk.

But my husband told me I snored and that he was pretty sure he'd seen me stop breathing at night. And he was alarmed about that.

Soon as I told my PCP "my husband says I snore and he thinks he's seen me stop breathing", my PCP immediately ordered a sleep test. I had no daytime sleepiness, no brain fog, no exceptional headaches, I was a 5'1" female who weighed 108 lbs. Fortunately my PCP took the fact that my husband said he thought I stopped breathing at night seriously: My diagnostic AHI was 23.

My 2 points on Stopbang? Snoring and witnessed apneas.

Seems to me that "witnessed apneas" ought to weigh a whole, whole lot more than being male or being overweight.

So let me ask a question.

It pertains to your lack of symptoms and NPSG results:

viewtopic.php?f=1&t=55636&p=520725#p520725

And for this I'd like you to put on your pragmaticest hat.

Yaggi says it's only if you have severe OSA that you're gonna die.

That said, was this trip worth it?

If you asked me back in the fall of 2010 I would have said, "No I'm not sure this is worth it, but I want to make it work."

Once the hand & foot pain mysteriously started to disappear by around February/March of 2011, I was starting to say "Yeah I think it is probably worth trying to make this crazy therapy work."

Now? I definitely do not regret the hard work it took into making xPAP finally work for me. Waking up pain-free has been and remains a real blessing. And while at the time nobody thought any of my headaches were related to OSA, I'm not so sure anymore. But the headaches---which included chronic migraines, significant sinus headaches, and tension headaches---took (and still take) a lot of work to keep under control.

And every once in a while I get forced to sleep overnight without the BiPAP. And I get a quick reminder of what my old "normal" was---as in even one night without the BiPAP, I'll wake up with the old hand-and-foot pain. And I definitely do not want to go back to that.

In other words: Pre-CPAP I had a lot of daily mild-to-moderate pain: The hand & foot pain was always at its worst upon waking up and would slowly get better, but on many days it would never go away. (The hand & foot pain had been diagnosed several years earlier as "mild osteoarthritis" and I was told treat it as needed with ibuprofen.) And the migraines & tension headaches were frequent---as in I would have a mild-to-moderate headache almost every day---as in I had maybe 1 or 2 headache free days per month. These headaches were not usually present at waking (hence nobody attributed them to the untreated OSA), but would often start during breakfast with that first cup of caffeinated coffee that was a significant part of getting through my day. And having had a serious case of rebound headaches in the aftermath of my husband's near fatal car crash in 1995, I had been told to be very careful about daily use of OTC pain killers to treat the almost constant daily headaches, even when the pain was severe.

Now? Between CPAP making the hand & foot pain disappear and the prescribed vitamin regime keeping the migraines under control combined with monthly trigger point injections to manage the tension headaches, most of my days are pain free. And even though I was never in severe, intractable pain pre-CPAP, I quite enjoy living virtually pain-free now.

So while I still look back on 2010-2011 as an 18 month long period of agony, I am in retrospect happy I was stubborn enough to not give up even after being fired by 2 sleep docs and firing a third one myself.

[robysue1]

And looking at The Numbers, was a diagnosis of Moderate Sleep Apnea warranted, or would UARS have been more appropriate?

But I guess we've been down this road before.

Twice, AAMOF.

Yes, we've been down this road before. And I think it's a reasonable hypothesis that my diagnosis ought to be UARS instead of moderate obstructive sleep apnea.

But back in 2010-11 UARS was not yet being widely talked about in my neck woods with any of the sleep docs I was working with. And as I recall, the place that did the NPSG didn't score RERAs. However, as I recall someone here (Muffy/NotMuffy? -SWS? Someone else?) did start raising the question about UARS when I was miserable and the xPAP therapy had triggered the worst case of prolonged insomnia that I've ever dealt with in my life. As I recall UARS was raised as an idea here on the forum specifically because the lab did make a distinction between "hypopneas with desat" and "hypopneas with arousal" and those pesky "hypopneas with arousal" were not counted in the lab reported AHI = 3.5, but were in the RDI = 23.1.

Sleep doc #1 didn't make any distinction between the AHI and the RDI and told me my AHI = 23.1. This was before I finally made his office give me a copy of my sleep test results, and at that initial post-diagnostic appointment with him, he didn't bother showing me the actual report from the diagnostic sleep test. He also made it sound like it was absolutely critical that I make CPAP work or that I would be at all kinds of increased risk for things like strokes, which have been far too common in my family. And at the time I was still naive enough about stuff not to question his diagnosis until I got my hands on the actual reports. That was one of the first big things cpaptalk.com did for me: Folks on the forum told me why I needed to see that report and what steps to take to get that report.

Since then, no other sleep doc has brought up distinguishing between UARS vs OSA as the correct diagnosis. But sleep doc #4 (who used a CPAP himself) took what I was dealing with seriously and helped me get on track and stay on track in terms of managing the insomnia, the delayed sleep phase problem, the excess spontaneous arousals, and the aerophagia. Sleep doc #4 also respected my ability to understand the data, he always appreciated having the data, and we would discuss the data as well as the insomnia and other problems. And sleep doc #4 gave me his official permission to take over managing the clinical settings of my machine if/when I ever thought I needed to change the pressure settings either to manage the events or the aerophagia. Sadly sleep doc #4 retired pre-pandemic. I still miss him.

[robysue1]

It pertains to your lack of symptoms and NPSG results:

viewtopic.php?f=1&t=55636&p=520725#p520725

And looking at The Numbers, was a diagnosis of Moderate Sleep Apnea warranted, or would UARS have been more appropriate?

And does UARS even exist?

Do you need EDS in order to have UARS?

And now that I'm approaching my 65 birthday next summer and facing the transition to Medicare, all of these questions are once again on my mind.

As I recall, even sleep doc #1 was finally forced into admitting that had I been on Medicare at the time of my diagnosis, Medicare would have balked at paying for a CPAP because those numerous "hypopneas with arousal" didn't count towards the Medicare definition of hypopnea (but the "hypopneas with desat" did) and that my "Medicare AHI" = 3.5 was too low to qualify for a machine. And so now that I've gotten used to sleeping with the machine and not waking up with hand & foot pain, I am quite concerned about whether Medicare is going to question the diagnosis and declare that they won't pay for any future bi-level machines or cover the replaceable supplies like masks unless a new sleep study actually shows that I've got a "Medicare AHI" over 5.

My own insurance company didn't care which way the hypopneas were scored and the RDI = 23.1 was more than enough to get them to pay for their 50% of the cost of the machine. (Yes, my otherwise stellar insurance company has really lousy 'coverage" of CPAP supplies. I could have switched to a different company under my employer's open enrollment periods, but while the other company has better coverage for CPAP, it's problematic in many other ways.)

[lazarus]

Anyone who manages to successfully treat UARS-ish SDB using PAP deserves a medal.

It's a shame payors may consider that miracle to be off-label use without the "correct" data "proof."

IMO, response to therapy ought to be enough. But the opinions of patients like me aren't worth the electrons we write with.

The right sleep doc may know how (legally, ethically, truthfully) to cook the books in your favor. But you may have to put your cards on the table face up from the start and then team together with that doc to do that delicate dance.

I seem to recall a doc (Wasn't it Dr. K?) who used to live in the high desert who had a team who was good at that sort of paperwork. I'm glad Rubicon let him live.

Otherwise, gray-market out-of-pocket it may have to be.

Just sayin'.

[Rubicon]

While CPAP should be given credit where credit is due, at most

Between CPAP making the hand & foot pain disappear ...

is a syllogism, and with your Sleep Efficiencies during diagnostic and titration NPSG 69.7% and 73.7% respectively, I would say that your successful attack on insomnia is responsible for (some? most? all?) of your overall improvement.

In re: your diagnostic AHI/RDI, in 2010 they should have (could have) been using AASM 2007 scoring criteria and included hypopneas w/arousals in calculation of AHI (the alternate definition). That said, they totally also should have noted what their scoring criteria was somewhere in the report.

Should have...

[Rubicon]

You never addressed the points I raised about the issues I see with STOPBANG.

Yeah, don't think I'll get to it today either. Got a lot of stuff planned. Although OU has a "bye week", gonna be a gorgeous day to get out fishing.

OK so

My son and I both have OSA and we only score 3 & 4 on STOPBANG.

Which questions did you answer yes to?

[colomom]

You never addressed the points I raised about the issues I see with STOPBANG.

Yeah, don't think I'll get to it today either. Got a lot of stuff planned. Although OU has a "bye week", gonna be a gorgeous day to get out fishing.

OK so

My son and I both have OSA and we only score 3 & 4 on STOPBANG.

Which questions did you answer yes to?

Hope you had fun fishing, I’m jealous! I’m stuck at home in isolation because of COVID and am really looking forward to getting back out into the world soon.

I answered yes to snoring, tired, & observed. I really wanted a sleep study and at the time I didn’t actually think the yes answer on tired was honest. Once I started using CPAP I realized that I had been extremely tired I just didn’t appreciate how tired I was because it was my normal. The snoring and observed were a very strong yes and I brought recording of me snoring like a freight train, choking, gasping then silence to my PCP; yet that doc still was only willing to order overnight oximetry.

My son answered yes to snoring, tired, male & observed.His life was a train wreck before we found solutions to his sleep issues. He would fall asleep constantly throughout the day anytime, anywhere. I had to pull him out of school and homeschool him because he was failing all his classes because he was sleeping through them all. The scariest thing was he started having hallucinations. The sleep doc he saw at Mayo who was a pediatric neurologist/ sleep doctor thought it was possible that the hallucinations could be a result of sleep issues and it was, once my son’s sleep was improved the hallucinations stopped.

[Rubicon]

Hope you had fun fishing

Yes thank you, a spectacular fall day up here.

I answered yes to snoring, tired, & observed. I really wanted a sleep study and at the time I didn’t actually think the yes answer on tired was honest. Once I started using CPAP I realized that I had been extremely tired I just didn’t appreciate how tired I was because it was my normal. The snoring and observed were a very strong yes and I brought recording of me snoring like a freight train, choking, gasping then silence to my PCP; yet that doc still was only willing to order overnight oximetry.

My son answered yes to snoring, tired, male & observed.His life was a train wreck before we found solutions to his sleep issues. He would fall asleep constantly throughout the day anytime, anywhere. I had to pull him out of school and homeschool him because he was failing all his classes because he was sleeping through them all. The scariest thing was he started having hallucinations. The sleep doc he saw at Mayo who was a pediatric neurologist/ sleep doctor thought it was possible that the hallucinations could be a result of sleep issues and it was, once my son’s sleep was improved the hallucinations stopped.

Well in that case just use STOP and you both would have been on the express train to NPSG:

http://oasyssleep.com/dentist-support/S ... -Apnea.pdf

[colomom]

Well in that case just use STOP and you both would have been on the express train to NPSG:

http://oasyssleep.com/dentist-support/S ... -Apnea.pdf

Sure, if STOP was the commonly used standard perhaps both my son and I would have had a high score but since that isn’t the prevalent standard what just STOP would show seems inconsequential. Much in sleep medicine is based in old thinking and old research that excluded woman due to the erroneous assumption that OSA only impacts men. As I said before STOPBANG could be improved. Another example is that menopause, pregnancy, and PCOS dramatically increase a woman’s likelihood of having OSA, yet none of these are considered in the most common OSA questionnaires that are given to women.

[Rubicon]

As I said before STOPBANG could be improved.

It was.

Now they call it Berlin.

[Rubicon]

Sure, if STOP was the commonly used standard perhaps both my son and I would have had a high score but since that isn’t the prevalent standard what just STOP would show seems inconsequential.

Not all all. Look again. STOP is actually STOPBANG weighted differently.