In anticipation of my BIPAP Re: New Thread

[Plmnb]

nope, always do as insert attachment.

I give up for now.

I'll try again later.

Thanks ApneaQuestions, appreciate the continued interest of course.

[70sSanO]

Plmnb,

You are doing great with your therapy. I am really amazed that you can tolerate an EPAP that goes to 17/18. Years ago I tried to hunt down some obstructive clusters on straight CPAP and got the pressure to around 18. It was so tough with the pressure being that high and it turned out that all I needed to do was wear a collar. I'm not saying that you should wear one, I'm just impressed at how well you are doing at that pressure. Hopefully with an ASV you can bring that down to a level that is easier to use.

One thing that I need to caution you about is to not get too caught up in the daily data dump and analysis. You have been getting great advice, but it is so easy to get sucked into the numbers that it becomes a life in itself. When I would obsess over my numbers years ago my wife would ask me I felt better, more refreshed, before or after I looked at the numbers. Even today I have to catch myself and not base how I feel on what the numbers say I should feel.

This doesn't mean that anyone should ignore the numbers or not try to get the therapy better so you can get better sleep and feel better. But life is about making CPAP better, CPAP is about making life better.

John

[ApneaQuestions]

EDIT: Crosspost... this is replying to slowriter

Yes.. they also call it optimizing the sleep drive. There's a few youtube videos describing it here. (parts 1 and 2)
https://www.youtube.com/watch?v=I43-VPULb2s

I'd love to have an off-topic thread where we could talk about this stuff if people are interested.
I keep biting my tongue on the whole CBT aspect of sleep but occasionally I slip in a quick "edit" to plant the subconscious seed.
It's actually a lot of fun spotting these thought distortions and dismantling them.... they happen so quickly and so instinctively that we don't even know we are doing it.
I wasn't joking when I said they happen 100 times per hour.

Sorry Phoebe... just a quick hijack while we wait for the images :-)

[Plmnb]

Hey friends.

I'm at work, so so sorry my dear ApneaQuestions...hang on until tonight...more than likely.

Regarding insomnia:

"Insomnia is a sleep disorder in which you have trouble falling and/or staying asleep. The condition can be short-term (acute) or can last a long time (chronic). It may also come and go. Acute insomnia lasts from 1 night to a few weeks. Insomnia is chronic when it happens at least 3 nights a week for 3 months or more".  Jan 4, 2020
http://www.webmd.com › Sleep Disorders › Reference

I never knew insomnia was more than just falling asleep.  So you think this insomnia is my biggest issue and not my sleep apnea?  I guess I should tell the psych doctor this too?  I wonder how the two conditions are interconnected?  For example, chicken or the egg?

This is cray cray:

I now have the following-

Sleep Apnea;
Bipolar;
Anxiety Disorder (I forgot to mention this and remembered yesterday when I found my psych diagnoses);
ADHD (Forgot about this diagnosis as well);
Nicotine Addiction;
Possible/probable parasominias (Sleep Sitting (Frequent), Sleep Smoking (Just Discovered), Sleep Talking (Frequent), Sleep Eating (Infrequent);
Eustachian Tube issues that affect my hearing;
Weight Issue;
Allergic Rhinitis;
Too big a tongue (Class III);
Narrow Nasal Passages;
Cognitive Distortions (Recently pointed out I may have a few);  ApneaQuestions....
Hole in my Septum (Very small and nothing to currently worry about, but might as well add to list);
Extremely low Vitamin D (On prescription Vitamin D);
Hypertension (Diagnosed just a few months ago and on 2 medications);

Hmmm, what else, what else??  Oh jeeze, I sound freaking pitiful...But I don't act like a pitiful person on a day to day basis.  I'm sure if I can GET SOME CONTINUIOUS DECENT SLEEP things will be much better.

I am back to chicken/egg, Catch 22.....I need energy to help with some of these issues...but if I do some of the things I need to do to help some of these issues, I'll naturally have more energy.

Yup...good thing I'm going to the shrink.

[Plmnb]

uh, oh...forgot about being diagnosed with arthritis in my knees a couple of months ago;
AND I go to the eye specialist every year for Glaucoma situation (Hereditary situation). Had laser surgery last year to put holes in my iris/pupil area;

There was something else...it has escaped my mind for the moment....

Oh, yeah..Eye doc also keeps a close eye, ha, ha, on a freckle at back of one eye in case of cancer.


ROFL

[Plmnb]

Ummmm    Do you think it is safe for me to do this?  I don't have any heart problems....that I know of...well except for a brief mention of LEFT ATRIAL ENLARGEMENT which my primary doctor is very unconcerned about, so I don't know anything about it...I'll spend some time on GOOGLE.  I do remember my doctor and his assistant questioning me if I had been given a chest scan and I said I had and they went and pulled the report, saying it looked fine.

Sleeprider has said my CA situation isn't very concerning at this point.  I know this ASV is "off label" for me, but I am trying to determine from the below information if my "off label" situation will stymie the sleep technologist?

Input please? Nothing to worry about as far as being dangerous?

Regarding ASV and the test


Plmn

[ApneaQuestions]

Please don't misunderstand what I am saying about cognitive distortions. They are not an "illness" and they are not a "diagnosis". They are simply a fact of life.
I believe that we ALL have them much of the time (with the possible exception of Mr. Spock and Commander Data). However, if some of them occur more frequently than others (especially the ones that are self-punishing) then they can lead to things such as depression and anxiety and phobias and many other things that don't feel good. Taken to an extreme, they can lead to or contribute to paranoia. Taken to the opposite extreme, they can lead to or contribute to mania. That's why CBT shows up across the whole spectrum of psychology and "disorders".

As for the insomnia question... it's just a word... just two bits of Latin stuck together. "in" means "not" (as in inactive, inappropriate etc) "somnia" means "sleep"
Similarly "parasomnia" is just a word... depending on the precise etymology it's probably a bit of Greek and a bit of Latin stuck together. "para" means "next to" or "beside" and "somnia" means "sleep' again.

So if I say I have insomnia and parasomnia.. it means I have "not-sleep" and I also have stuff happening next to or adjacent to my sleep.

I prefer to ask... WHY do I have insomnia or WHY do I have parasomnia and what (if anything) may be exacerbating it or may even be causing it and what can I do about it?
I think it's usually a combination of many things. Some have a bigger impact than others for different people on different days.

For sure, apnea can exacerbate sleep issues. So can flow limitations. So can a congested nose. So can drug-withdrawal. So can adrenalin rushes. So can anxiety. So can pain. etc.

What we are doing with your flow limitations is trying to reduce or eliminate just one of these things. If it turns out that the breathing was one of your biggest issues (this time around), then fixing it or improving it may have a profound beneficial effect. There's no guarantee that fixing that one issue will solve everything at a stroke though. We won't know until we fix it or at least improve it.

As for the ASV connection to heart left-ventricular ejection fractions.... the jury is still out. An older study suggested a risk for certain people in certain groups. That's why I believe the doctor will want an echocardiogram before writing a long-term prescription (but maybe not for a one week trial). A more recent ongoing study seems to be reaching a different conclusion but they have not published yet so the results and conclusions do not apply yet.

[Plmnb]

70sSanO,

I understand, thank you and I do appreciate your words of caution.  I have been indoctrinated in the "it's not the numbers, it's how you feel" by many of our fellow members, and I try to remind myself of that very often.  I'm truly just looking to feel better, I don't care if the AHI is 10, as long as I feel refreshed, energetic, happy, less grumpy, more patient, etc....Like I used to be.

But this is a big puzzle to me and I enjoy puzzles.  I feel like there may be some that are asking, "doesn't she have anything else to do besides writing all these posts?" and I must say I do have some nice free time between work and waiting for my husband to wake up or get home.  (One of these days I will use some time for the exercise I sorely need).  Oh, and maybe read a book again...which I love to do.  AND go play Texas Holdem again.

Anyway, thanks for taking the time to write on my thread, I truly appreciate it.

Plmnb

[70sSanO]

In talking to my sleep doc, he said the Resmed ASV study was seriously flawed and no one has been able to substantiate the issue outside of that one study.

I’m on ASV and not losing sleep over it.

John

[Plmnb]

Very helpful explanations ApneaQuestions, thanks for the time you put in answering.  I have printed some of your posts and sleeprider's posts to review at home, later.

The sleep doc. didn't say anything about an echocardiogram.  Do you think I should bring it up?  I forgot to tell him about the enlarged left ventricle.  Perhaps not important to mention since my primary doc isn't concerned? I have not been scheduled for this type of test and my ASV study is this next week.

I can't find any internet studies, at least not with my search term usage/string, about off label use.  All I have seen so far is that ASV is for people with Complex or Central Apnea, unless you have chronic, symptomatic heart failure (NYHA 2-4) with reduced left ventricular ejection fraction (LVEF ≤ 45%) and moderate to severe predominant central sleep apnea, then it is contraindicated.


70sSanO, Is your issue CAs or are you using ASV for off label treatment?  I couldn't determine from your threads.

Plmnb