Why have prescription maximums (at least initially)?

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Pugsy
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Re: Why have prescription maximums (at least initially)?

Post by Pugsy » Thu Nov 03, 2016 7:56 pm

Ruinednose wrote:
What do you recommend for range. If I post my in depth SH info would that help to determine? Goal to is to get overall optimal therapy
So what makes you think your therapy isn't optimal now?
There's no way anyone can have the foggiest idea what range to recommend with seeing what you are seeing on SH.
Please don't include a gazillion graphs that aren't needed.
See this..there's 3 pages...be sure to read them all
https://sleep.tnet.com/resources/sleepyhead/shorganize

Start a new thread of your own so your stuff doesn't get mixed up with the stuff in this thread and you get direct attention from the forum members to your problem.

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Re: Why have prescription maximums (at least initially)?

Post by PEF » Fri Nov 04, 2016 10:57 am

Yes, Robysue, I think all your comments are spot on. I am now writing everything out, all your suggestions. I have taken your advice to do all I can before evening to get my xPAP stuff completed, so that I don't have to fuss with any of it before bed. Already, in the last 4 or 5 nights, since I have partially re-implemented this routine, my sleep onset time has been reduced by about 1/3 on average, some nights by 1/2. Just getting rid of anxiety about the xPAP has helped greatly.

I think there are some of your and Pugsy's questions I have yet to answer. What I would like to do is to put the xPAP stuff on hold for now. I don't want to resurrect any anxiety at this point. I want to work exclusively on my sleep onset insomnia. So can we revisit those things later if warranted? I also don't to waste your and Pugsy's time if these things are not really that important.

I agree with you and jnk about why I feel better with slightly higher AHI and leaks. I think it means that I am finally getting some really deep sleep with xPAP. And that is really good news. Because my mind was so sensitive, for many months, my low AHI may have been misleading because I was spending way too much time in the lighter stages of sleep, with quite a few wake-ups, that may have been caused by xPAP anxiety on an unconscious level. So I was not feeling very refreshed in the morning.

So at this point, I have plenty to work on. The sleep onset insomnia must come first. Does this sound reasonable?

There is one other thing that I have been told by psychics and therapists that may cause insomnia in my case, but I don't want to discuss this if it turns out to be irrelevant. I have had, in the past, sleep onset insomnia, that was not accompanied by anxiety. But that may be a discussion for another time.

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Re: Why have prescription maximums (at least initially)?

Post by robysue » Fri Nov 04, 2016 3:54 pm

PEF wrote: I think there are some of your and Pugsy's questions I have yet to answer. What I would like to do is to put the xPAP stuff on hold for now. I don't want to resurrect any anxiety at this point. I want to work exclusively on my sleep onset insomnia. So can we revisit those things later if warranted? I also don't to waste your and Pugsy's time if these things are not really that important.
I think it is an excellent idea to put the CPAP stuff on hold for now in the sense of the following things:

1) Get the CPAP stuff out of the way early in the evening so you don't have to think about it at bedtime.

2) Continue using the S9 AutoSet at your current settings as long as you don't get any aerophagia.

3) Don't worry about leaks unless they wake you up.

4) Make the decision about how often to check the CPAP data based on whether checking the data is going to increase your anxiety. With the S9, it is useful to download the data every 7 days so that you don't lose any of the wave flow, but if you loose a few days of wave flow data, don't worry about it.
So at this point, I have plenty to work on. The sleep onset insomnia must come first. Does this sound reasonable?
This sounds reasonable. Indeed, I would argue that working on the sleep onset insomnia is the MOST important thing you can do right now. Just remember to sleep with the CPAP every night. Your therapy is clearly "good enough" for now in terms of managing any OSA/UARS problems. So start focusing on the sleep onset insomnia.
There is one other thing that I have been told by psychics and therapists that may cause insomnia in my case, but I don't want to discuss this if it turns out to be irrelevant. I have had, in the past, sleep onset insomnia, that was not accompanied by anxiety. But that may be a discussion for another time.
It's fine to not want to discuss it now.

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Re: Why have prescription maximums (at least initially)?

Post by Grace~~~ » Fri Nov 04, 2016 7:20 pm

RobySue Wrote:

"After laying in bed for about 1 and 1/2 hours, I can feel the air sneaking in from the left side where I have a missing molar and soon after, I can feel some in my stomach."

(sorry for not getting that in a "posting box". I did try a few times )

RobySue ~~~ You are so wonderful to so many people that I cannot help but wonder
about this missing molar?

Would your life be in any way improved if this molar were replaced?

I bet there would be dentists lined up to donate to someone as worthy as you.
~~~unless there is another reason why it is either not a problem or an asset?

I hope this is not too personal.
It would be lovely if I could make any improvement in your life.
~~~as you (and many here) clearly do for others.

I don't know how much thought or significance you give that molar?
It must make keeping a seal more difficult?
Began XPAP May 2016. Autoset Pressure min. 8 / max 15. Ramp off. ERP set at 2. No humidity. Sleepyhead software installed and being looked at daily, though only beginning to understand the data.

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Re: Why have prescription maximums (at least initially)?

Post by robysue » Fri Nov 04, 2016 8:01 pm

Grace~~~ wrote:RobySue Wrote:

"After laying in bed for about 1 and 1/2 hours, I can feel the air sneaking in from the left side where I have a missing molar and soon after, I can feel some in my stomach."

(sorry for not getting that in a "posting box". I did try a few times )

RobySue ~~~ You are so wonderful to so many people that I cannot help but wonder
about this missing molar?

Would your life be in any way improved if this molar were replaced?
You are quoting someone else. I don't have a missing molar. And I don't have air sneaking into my stomach because it's leaking in through a hole from a missing molar.

I do have problems with aerophagia. My aerophagia is usually directly related to how many arousals and restlessness I have during the night and whether my EPAP spends a very long time at 6cm instead of staying mostly at 5.5 and below.

The thing that causes my aerophagia is this: When I arouse or wake up, I have a tendency to swallow. With the pressurized air from the PAP, that lets too much air enter my stomach. The additional air in my stomach causes additional arousals. Which causes more swallowing and more aerophagia. Which causes additional arousals. Which causes additional aerophagia. All night long.

In my case the best thing I can do to manage my aerophagia is to minimize the number of arousals and wakes as well as the time I am lying in bed with the mask on while NOT sleeping.

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Re: Why have prescription maximums (at least initially)?

Post by Grace~~~ » Fri Nov 04, 2016 8:14 pm

Hi RobySue ~~~

That makes sense. It was so hard for me to believe that you would have advanced
to this level of research with the xpap and not fixed a variable like a molar.

I must have gotten lost in page two?

I imagine molars and all teeth are important for creating a nice tight seal
in one's mouth?

You and PEF have been really doing amazing writing.
~~~even if *I* am missing some of the details.

I hope this doesn't interrupt your flow.

I'll go back and try to make sure I understand who is saying what.
Began XPAP May 2016. Autoset Pressure min. 8 / max 15. Ramp off. ERP set at 2. No humidity. Sleepyhead software installed and being looked at daily, though only beginning to understand the data.

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Re: Why have prescription maximums (at least initially)?

Post by robysue » Fri Nov 04, 2016 8:47 pm

Grace~~~ wrote:Hi RobySue ~~~

That makes sense. It was so hard for me to believe that you would have advanced
to this level of research with the xpap and not fixed a variable like a molar.

I must have gotten lost in page two?

I imagine molars and all teeth are important for creating a nice tight seal
in one's mouth?
In my experience, the critical factor is the placement of the tongue. If the tip of the tongue is resting on the roof of your mouth behind your front incisors, the back of the tongue usually seals off the upper airway quite effectively from the oral cavity in your mouth. And then no air can get into the mouth. So no air can leak through the mouth.

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Re: Why have prescription maximums (at least initially)?

Post by Grace~~~ » Fri Nov 04, 2016 9:12 pm

robysue wrote:In my experience, the critical factor is the placement of the tongue. If the tip of the tongue is resting on the roof of your mouth behind your front incisors, the back of the tongue usually seals off the upper airway quite effectively from the oral cavity in your mouth. And then no air can get into the mouth. So no air can leak through the mouth.
I have all my teeth so this is easy for me. It just made sense to me that it might be harder if someone were missing a tooth. Air in the stomach seems like a terrible price to pay for a missing tooth.

I read when I first got here to CPAPTALK, Janknitz explaining this tongue placement and talking about having underwater tea parties when she was a kid. I lived more life underwater than above and spent hours each day in underwater tea parties and underwater 'who can scream loudest' contests.

I think that may have helped in my understanding how to seal that area fairly intuitively.

I will be seeing my dentist again in January and I am worried because my teeth hurt in the morning from the cpap. They don't feel loose, and it goes away within 15 minutes or so. I have managed to live this long without a cavity and with pretty great teeth and I'd hate to think my new best friend and sleeping partner, cpap, might be causing unintended consequences.
Began XPAP May 2016. Autoset Pressure min. 8 / max 15. Ramp off. ERP set at 2. No humidity. Sleepyhead software installed and being looked at daily, though only beginning to understand the data.

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Re: Why have prescription maximums (at least initially)?

Post by PEF » Sat Nov 05, 2016 10:14 am

Hi Grace, thanks for responding. I am the one with the missing molar. I appreciate you bringing this up because that was an important question for me. I have not had an implant because, well, kind of long story, but a drug I was given for osteoporosis damaged my jaw and an implant could be problematic without bone grafts. The doctors did not realize that I had hyperparathyroidism which was the reason I was developing osteoporosis. I should never have been given this drug. Finally it was discovered and I had surgery for the hyperarathyroidism in 2012.

But I feel pretty confident that my tongue can still plug the hole as long as I don't raise pressure quickly. I also think, as Robysue said was the case with her, that frequent arousals are more likely to be the source of the aerophagia.

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Re: Why have prescription maximums (at least initially)?

Post by PEF » Sat Nov 05, 2016 11:31 am

Thanks so much, Robysue,

I had a good night last night with my new routine. Sleep onset insomnia was roughly half of what it was before, about 1 and 1/2 hours, with only one instance of getting up as opposed to 3 to 4 hours with multiple instances of getting up. Heck, I can easily deal with and hour and a half! I just need to keep it up.

Another unbelievable thing. In simplifying my xPAP routine before bed, I accidentally ended up in bed without my mouth tape 2 nights ago. Not wanting to disturb my new routine, I just skipped it. I actually did much better without it. It appears I don't need it anymore after almost 1 year.

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Re: Why have prescription maximums (at least initially)?

Post by Grace~~~ » Sat Nov 05, 2016 11:31 am

Hi PEF.

I hope you slept well last night.

That 'aerophagia?' sounds really uncomfortable. It sure would be a shame if great wisdom and advice about pressures somehow wasn't working when IT SHOULD ... just because of something seemingly insignificant overlooked (or unknown). Like a missing molar. Heck, with all the chinstraps, mouth taping, neck braces, pillows, incense, etc. that folks use to customize and optimize their therapy it seems that no small stone should not at least be overturned even if discarded as meaningless.

I am sure you should not just carelessly put anything in that missing space just to give it a try as you could easily choke on it, but maybe there is a solution that doesn't involve an implant?

IF ... IF ... things just don't seem to be working and adding up on their own, you know?

PEF, I have been trying to follow your story and sending out positive thoughts to you. Actually my positive thoughts are prayers ... *I* am so controversial! LOL I once read someone say they hated prayers but didn't mind "positive thoughts coming to them from God". Funny.

~~~anyway~~~

PEF you are SUPER BRAVE to be so vulnerable in asking for help that you desperately need.

...and Pugsy and RobySue, et al are absolutely mind blowing!
As a reader following this thread several of the just 'off hand comments / hints' have even been HUGE building blocks in my own understanding.

~~~anyone who exhibits your level of bravery is bound to conquer, PEF. I hope the future is all smooth sailing for you.

~~~grace
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Re: Why have prescription maximums (at least initially)?

Post by robysue » Sat Nov 05, 2016 1:44 pm

PEF wrote:Thanks so much, Robysue,

I had a good night last night with my new routine. Sleep onset insomnia was roughly half of what it was before, about 1 and 1/2 hours, with only one instance of getting up as opposed to 3 to 4 hours with multiple instances of getting up. Heck, I can easily deal with and hour and a half! I just need to keep it up.
That's really good news. Let's hope you can get a lot of nights in a row with this kind of progress. But do keep in mind that there's a lot of 2 steps forward, one step back when you're dealing with this kind of stuff. Don't abandon the new routine on the first night it "doesn't work" as well as you'd like it too.
Another unbelievable thing. In simplifying my xPAP routine before bed, I accidentally ended up in bed without my mouth tape 2 nights ago. Not wanting to disturb my new routine, I just skipped it. I actually did much better without it. It appears I don't need it anymore after almost 1 year.
I'd say skip the taping routine for now. IF leaks start to wake you up or create problems with going to sleep or IF the data shows you need to continue to tape, you can revisit that issue later. But some people do learn to keep the tongue up where it needs to be and their mouth shut for most of the night after a while. I think Pugsy started out taping and then realized that she no longer needed to tape after a while.

Keep up the good work!

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Re: Why have prescription maximums (at least initially)?

Post by Pugsy » Sat Nov 05, 2016 3:09 pm

robysue wrote: I think Pugsy started out taping and then realized that she no longer needed to tape after a while.
I did indeed do the taping thing for a while after I had tried some sort of chin strap (various methods) and I discovered I found the taping was less annoying to me than the chin straps.
I have never really been a mouth breathing..no need..nose works fine 99% of the time.
But I had developed a bit of a habit of mouth breathing probably because pre cpap I was gasping for air and trying to get air anyway I could. It took me a little bit to relearn the habit of keeping my mouth closed.

I think about 2 to 3 months into therapy I started to "forget" to tape until lights were out and I was already masked up and I started to just not bother to get up and get the tape. I watched my leak report and for the most part no evidence of mouth breathing leaks and nothing woke me up so I figured if it ain't broke no need to fix it.
Now sometimes I know I do a little mouth breathing....but it's not prolonged and it's rare and even rarer for it to go into large leak territory. Most of the time I stay under the 30 L/min mark (ResMed) and if it's 5 or 10 minutes out of the whole night I really don't care as long as I am sleeping well.

My sleep is so fragile anyway that I just don't want to risk making it worse.
Taping was okay...I slept decently enough doing it but I much prefer as little on my face as possible and that includes not using the tape unless I have to.

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Re: Why have prescription maximums (at least initially)?

Post by PEF » Mon Nov 14, 2016 12:24 pm

I wanted to restart this thread with an update and the reintroduction of an old problem.

The good news is that I have made a lot of progress with my sleep onset insomnia. On average I only lay awake or drift in and out of light sleep for 45 minutes to an hour now, with an occasional bad night. My new sleep routine, which I have also simplified, is really helping along with changing my sleep times to better reflect what my body wants to do. Now I stay up much later, to at least 1am and am usually able to sleep in to 9am or 9:30am. So for the first time in quite awhile I am finally getting enough sleep. And I am sleeping much more deeply and feeling much more refreshed in the morning. My mask is not waking me up even when rolling around during deep sleep causes leaks. I have not looked at my sleepyhead reports for at least a week.

The not so good news is that I still wake up a lot even though my sleep quality has improved a lot. But I think I know why and it has nothing to do with mask or machine. And these are doing their job for me fine. Here is an article by Dr. Steven Park explaining the sequence of events that start with increased breathing effort, which creates a vacuum effect in the throat and/or chest that results in stomach contents being suctioned into the breathing apparatus. This sets off a serious of events in the brain that causes one to wake up often with the need to swallow. Here is a section of his article that illustrates what I am saying: (will post the link to the entire article below)

"We know that any form of breathing obstruction (apnea, hypopnea, RERA) can cause you to wake up. But what's not too commonly known is the fact that any degree of acid in the throat can stimulate certain chemical receptors, which causes you to wake up so you can swallow. It's thought that this is needed to prevent aspiration of stomach juices into your lungs.

A recent Japanese study not only confirmed these concepts, but found an interesting additional observation: While people with severe obstructive sleep apnea have mostly arousals due to breathing pauses, those with mild to moderate sleep apnea have a higher number of spontaneous arousals. Spontaneous arousals are noted on a sleep study when your brain waves go from deep sleep to light sleep or temporary awakening, without any objective evidence of breathing pauses."

http://doctorstevenpark.com/reflux-and- ... leep-apnea

Robysue, you asked me about GERD. If you mean "do I have heartburn?", the answer is no. However I do have something called LPRD which is where stomach contents (not just acid) end up in somewhere in one's throat and/or respiratory system where they don't belong. Recall that, prior to xPAP therapy, I complained about waking up often at night and in the morning with respiratory complaints such as stuffed up nose, sore throat, cough, asthma, etc? I had this problem for many years and the common GERD medications that doctors gave me never helped at all. I saw a Gastroenterology specialist who did not think I had stomach problems. I also noticed that these episodes only happened at night and got worse the deeper I slept. So, when I suffered from insomnia, I did not have problems with LPR because I stayed in light sleep or awake most of the night. However, during periods when I was not having insomnia and sleeping deeply and normally, the LPRD would get really bad. There is a lot of controversy in the medical profession about what causes LPRD. I came to believe that the LPRD is a symptom of sleep apnea. That is why I decided on xPAP.

Now that I am spending much more time in deep sleep, I am noticing that, even with the PAP therapy, I am often awakening with the need to swallow to clear my throat. However the severity of the LPRD has dramatically decreased because of PAP. It is nothing like it used to be. I am so grateful for that. I am now noticing, since I slept really deeply the last few nights, a slightly scratchy throat with increased phlegm, slight stuffed up nose and slight cough that I did not have before the insomnia got much better. But Dr. Park's article explains this better than I can.

I have to wonder if the insomnia and light sleep is a protective measure against the threat of ending up with stomach contents in my respiratory apparatus.

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Re: Why have prescription maximums (at least initially)?

Post by PEF » Sat Nov 19, 2016 6:08 pm

The above post illustrates why I am concerned that my machine (or my pressure settings) may not be completely resolving my UARS issues. As I indicated above, since thanks to Pugsy and Robysue's help, the sleep-onset insomnia has much improved and I am sleeping much more deeply and feeling more refreshed, I had a recurrence of my respiratory issues. I have not had these symptoms in over a year since starting CPAP. I am finally sleeping really deeply with xPAP.

So just a few days ago, I started taping my mouth again and that seems to be helping the LPRD that happens at times when I am in deep sleep. But I do remember waking up feeling the need to swallow.

A lot of UARS suffers complain about respiratory issues such as sore throat, asthma, cough, stuffed up nose happening at night while they are asleep. So my biggest concern with UARS is not the awakenings, but the reflux being suctioned from the stomach to the respiratory apparatus. I suffered so many years with this problem, not realizing that it was caused by sleep apnea.

Does anyone know anything about this?

I guess my question is if higher pressure or a different type of machine might help more with UARS? Doesn't Dr. Krakow recommend ASV machines for UARS? I don't understand because I thought these machines were for central sleep apnea.

Anyway, Dr. Park has a new book coming out on CPAP. I hope this book can answer some of my questions.

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