xPAP still a disaster

General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Julie
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Re: xPAP still a disaster

Post by Julie » Mon Oct 16, 2017 9:35 pm

Max, have you tried e.g. Padacheek.com liners to help with leaks?

TedVPAP
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Re: xPAP still a disaster

Post by TedVPAP » Mon Oct 16, 2017 9:41 pm

MaxINTJ wrote:(/rant on)

It's been just about 3 months now and other than 2 days where I got by with 2 less cups of coffee, I am not experiencing any benefit from xPAP.

Sure, I don't snore any more but the leaks, gasping and other weird noises wake my wife up every night any way.

I have not found a solution for my mouth blowing open when pressure rises so my mouth feels like the Sahara Desert every morning.

I have tried a chin strap (pressure came out my lips), tape (haven't found any that sticks yet), and a FFM (which lasted an hour until it leaked like crazy and woke me up with face farts.

My wife had learned to sleep through most of my snoring but can't sleep through the failing xPAP noises, and since I don't feel any better and she feels worse, it's looking tempting to just say eff it.

I won't feel any different and will probably end up falling asleep on the highway either way, but if I give up on xPAP, my wife will at least get more sleep.

(/rant off)
Is mouth leaking causing you problems, or just your wife?
What does data show?
If taping did not stop mouth leaking, then you are not doing it correctly.

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Pugsy
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Re: xPAP still a disaster

Post by Pugsy » Mon Oct 16, 2017 10:41 pm

xxyzx wrote:sheesh

i give people some credit to be able to think and connect a dot
(and a few i know that cant)

do i have to spell it all out like kindergarten for folks here
Well yeah, you do.
You need to be correct and complete in your responses. If not complete then stuff is omitted and that makes it incorrect.
Your quick abbreviated writing style leaves a lot of explanation out and that explanation is real important to newbies.
They can't read your mind.
You do a half assed job of "helping" most of the time. Especially when talking about more complicated stuff.
Remember most of these newbies barely understand what AHI means and some can barely manage a computer much less understanding the ins and outs of all these various machines and what they will or will not do.

Remember that most of these people aren't as smart as you think you are.

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Re: xPAP still a disaster

Post by yaconsult » Tue Oct 17, 2017 1:00 am

Throat like a desert means that you are mouth breathing. A long time ago I caught myself breathing in through my nose and out through my lips. Chinstraps were ineffective as you can still blow air out through your lips even with your teeth clenched.

The specific tape that works extremely well for taping your lips shut can be bought at Walmart for less than $3 for two rolls. Here is the item: https://www.walmart.com/ip/Equate-Senst ... /180345854 It's 3M Micropore that has been relabeled for Walmart but it still has the real name inside the spool.

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MaxINTJ
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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 5:25 am

TedVPAP wrote:Is mouth leaking causing you problems, or just your wife?


Both, so it's 2 problems, not just one.
TedVPAP wrote:What does data show?
If taping did not stop mouth leaking, then you are not doing it correctly.
Data shows large leaks anywhere between 15% and 30% on average. The mask itself has never caused a large leak as far as I know - it actually seals very well, even at higher pressures.

As for taping, short of using something like duct tape and wrapping it around my entire head multiple times, I cannot find anything that actually sticks well enough to keep my mouth closed while just allowing my jaw to relax (which is what happens in sleep).
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MaxINTJ
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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 5:26 am

yaconsult wrote:Throat like a desert means that you are mouth breathing. A long time ago I caught myself breathing in through my nose and out through my lips. Chinstraps were ineffective as you can still blow air out through your lips even with your teeth clenched.

The specific tape that works extremely well for taping your lips shut can be bought at Walmart for less than $3 for two rolls. Here is the item: https://www.walmart.com/ip/Equate-Senst ... /180345854 It's 3M Micropore that has been relabeled for Walmart but it still has the real name inside the spool.
I just bought some of that for the reason it's made - I can try a piece of that tonight, but I have my doubts...

Thanks for the link!
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Arlene1963
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Re: xPAP still a disaster

Post by Arlene1963 » Tue Oct 17, 2017 6:06 am

Since XPAP (and ASV) seem not to be helping (to use your word is actually a "disaster") you might want to consider that the problem is not Sleep Disordered Breathing since treatment is not helping one bit with your symptoms, and is, in fact making you feel worse and creating a lot of stress in your life and also for your wife.

There is a time and place to hang in there, but you have not been diagnosed with OSA and until you get an official UARS diagnosis my recommendation would be to just stop XPAP and work on getting a proper diagnosis, UARS or not. As I understand this you were hoping that it would help and you have your answer so until someone diagnoses UARS or you feel better pretty soon, why continue?

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MaxINTJ
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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 6:28 am

Arlene1963 wrote:Since XPAP (and ASV) seem not to be helping (to use your word is actually a "disaster") you might want to consider that the problem is not Sleep Disordered Breathing since treatment is not helping one bit with your symptoms, and is, in fact making you feel worse and creating a lot of stress in your life and also for your wife.

There is a time and place to hang in there, but you have not been diagnosed with OSA and until you get an official UARS diagnosis my recommendation would be to just stop XPAP and work on getting a proper diagnosis, UARS or not. As I understand this you were hoping that it would help and you have your answer so until someone diagnoses UARS or you feel better pretty soon, why continue?
Odds are I will not get a UARS diagnosis. I have searched the local (ish) area and there are no doctors certified/qualified in it - that I could find anyway.

I have horrible sleep, the sleep study showed it, my machine data shows it, and I feel it every waking minute of every day. Most if not all folks here know exactly how I feel, you've all felt the same way (or maybe still do).

CPAP has zero effect on my sleep, but ASV seems to have the ability to smooth out my sleep. To what extent I don't know, because I have not been able to go more than a couple of hours without huge leaks which cause arousals.

So I am stuck between the proverbial rock and hard place. I can see that ASV *could* work, but am unable to get there.

It doesn't help that this is the 3rd health issue I have acquired in the last 2 years that cannot be "cured" - and it has the most potential for causing serious harm. For all this modern medical knowledge and technology, it's pretty effing useless for the health issues I have.
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Re: xPAP still a disaster

Post by Pugsy » Tue Oct 17, 2017 6:40 am

Arlene1963 wrote: There is a time and place to hang in there, but you have not been diagnosed with OSA and until you get an official UARS diagnosis my recommendation would be to just stop XPAP and work on getting a proper diagnosis, UARS or not. As I understand this you were hoping that it would help and you have your answer so until someone diagnoses UARS or you feel better pretty soon, why continue?
Actually he did get a night recently where he didn't use the machine because of mask issues and frustrations.
Abandoned after about an hour of mask fiddling.
He told me he woke up feeling like crap...worse than usual and with a headache, etc.
I had to chuckle a bit because one of the things I was wanting him to eventually do after using xpap for a period of time was to not use it and see what happens. It just happened on its own a little sooner than I anticipated.

xpap is helping but not as quickly or as markedly as he had hoped. He's not got the greatest supply of patience in the world and he is the first to admit it. We talk about it quite often. He was hoping to see marked relief after 6 weeks and I was thinking we would be lucky if he saw a small change after 6 months.

I have seen his sleep study reports and something is trashing his sleep quality...lots of arousals both respiratory related and spontaneous and even a handful of limb movement related. If he doesn't have UARs I would be very surprised. It's pretty much classic but the other arousals aren't breathing related so while we can help smooth out the breathing related stuff we can't fix the spontaneous arousals.
What we are hoping is that by fixing the breathing related arousals that it brings down the total number of arousals to a point where he doesn't feel like crap and have to accept that until the cause of the spontaneous arousals can be found and fixed that his sleep is not going to be perfect or anywhere near perfect.
He's like most people...putting all his eggs in one basket and wanting xpap to fix all the problems and it can't.
He and I have had this discussion many, many times.

He comes here and is really just ventilating his frustrations. I understand that. He needs to do that.

The reason we are working on the leak situation so much is because we can't evaluate the breathing quality overall and especially the remaining evidence of arousal breathing when the leaks are in large numbers because we don't know if the arousal breathing we see with the leaks would be there without the leaks and it's the arousal breathing we are watching. The leaks themselves aren't really that big of a deal in his situation if they weren't disrupting wife's sleep. It's not like he has to maintain a critical pressure to hold the airway open like OSA people need. And most of his leaks are below 35 L/min anyway. The actual time spent in really, really big leak is relatively small.

Overall his number of arousals have reduced quite a bit. So some progress has been made. His asleep breathing flow rate has improved slowly but it isn't where he wants it to be.
He now knows that he feels worse without therapy...so it is helping.

His AHI which is 99% SWJ is slowly dropping which is a backwards way of knowing that the arousals are slowly dropping.

He has multiple issues going on messing with his sleep quality. Part of it is very likely UARS as evidence by the respiratory related arousals on his sleep study. Part of it, and a significant part, are the spontaneous arousals which outnumbered the respiratory arousals and we can't fix those with xpap because they aren't related to breathing problems.

His use of the word "disaster"...just his frustrations and lack of patience coming out. He's wanting to dump all his problems in the UARS basket and expect xpap to fix them and fix them quickly. Even if UARS was 100% of his problem xpap doesn't fix it quickly in most people and especially with UARS it often takes months and months to see improvement.
And we know for sure that a substantial part of his sleep issues aren't related to UARS (assuming that is what is going on) at all.

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MaxINTJ
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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 6:58 am

Pugsy wrote:[xpap is helping but not as quickly or as markedly as he had hoped. He's not got the greatest supply of patience in the world and he is the first to admit it. We talk about it quite often. He was hoping to see marked relief after 6 weeks and I was thinking we would be lucky if he saw a small change after 6 months.

His use of the word "disaster"...just his frustrations and lack of patience coming out. He's wanting to dump all his problems in the UARS basket and expect xpap to fix them and fix them quickly. Even if UARS was 100% of his problem xpap doesn't fix it quickly in most people and especially with UARS it often takes months and months to see improvement.
And we know for sure that a substantial part of his sleep issues aren't related to UARS (assuming that is what is going on) at all.
Damn you're brutal - but you say it in such a nice way.

But yes, I have been on xPAP since the end of July and my store of patience was gone by August 1st.

I don't take my car to the shop and have them tell me "I fixed it but it may take some time until it runs right. You need to bring it back to the shop everyday for 6 months and then MAYBE it will be running like it's supposed to."

I find it immensely irritating that medical science seems to be unable to treat any of my 3 recent issues, and this one being the third, gives medical science the 3rd strike. >.<
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Arlene1963
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Re: xPAP still a disaster

Post by Arlene1963 » Tue Oct 17, 2017 7:10 am

Pugsy wrote:
Actually he did get a night recently where he didn't use the machine because of mask issues and frustrations.
Abandoned after about an hour of mask fiddling.
He told me he woke up feeling like crap...worse than usual and with a headache, etc.
I had to chuckle a bit because one of the things I was wanting him to eventually do after using xpap for a period of time was to not use it and see what happens. It just happened on its own a little sooner than I anticipated.

xpap is helping but not as quickly or as markedly as he had hoped. He's not got the greatest supply of patience in the world and he is the first to admit it. We talk about it quite often. He was hoping to see marked relief after 6 weeks and I was thinking we would be lucky if he saw a small change after 6 months.
Thanks for that info, Pugsy.

.
Last edited by Arlene1963 on Wed Nov 15, 2017 2:56 pm, edited 2 times in total.

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Pugsy
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Re: xPAP still a disaster

Post by Pugsy » Tue Oct 17, 2017 7:13 am

MaxINTJ wrote:Damn you're brutal - but you say it in such a nice way.
I told you a long time ago when we started this process that I wouldn't pull any punches. I told you it wouldn't be an easy fix IF we could get it fixed at all.
MaxINTJ wrote:I find it immensely irritating that medical science seems to be unable to treat any of my 3 recent issues, and this one being the third, gives medical science the 3rd strike. >.<
Life sucks and medicine isn't always the exact science we want or expect it to be. It sucks but it is what it is.

Today I take my mom for a heart test to see if her heart is strong enough for them to give her the drugs they want to give her to kill the cancer that has likely spread all over her body. She drew a short straw in life too...happened to get a particularly nasty and very aggressive type of cancer instead of one that doesn't like to go outside the breast.
Treatment is a DNA targeted treatment based on the DNA of the cancer....so medicine has vastly improved in some areas over what it was 20 years ago....but we still aren't in the Star Trek category of waiving a tricorder over the body and knowing exactly what is wrong and fixing it.

Positives in life are really hard to find when all we look for is negatives.

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MaxINTJ
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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 7:22 am

Pugsy wrote:Today I take my mom for a heart test to see if her heart is strong enough for them to give her the drugs they want to give her to kill the cancer that has likely spread all over her body. She drew a short straw in life too...happened to get a particularly nasty and very aggressive type of cancer instead of one that doesn't like to go outside the breast.
I thought the biopsies were clear?
Pugsy wrote:Positives in life are really hard to find when all we look for is negatives.
I think part of that is because when things are positive, we have a tendency to just cruise along enjoying life - we usually never stop and think about it being positive.

The negative stuff stops our happy cruise and by doing so, jumps in our face and makes the negative blatantly obvious.
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Re: xPAP still a disaster

Post by Pugsy » Tue Oct 17, 2017 7:53 am

The biopsy was clear of the lymph node but apparently this particular form of cancer can spread into various other areas of the body (and likes to) without leaving a trace in the nodes.
All cancer is bad but there are varying degrees of bad...and hers happens to be the worst of the bad.
One of the major side effects of the drug is heart damage and she is 85 and her heart may not be all that strong.
If it isn't strong enough to with stand potential damage then the risk of the cancer popping up elsewhere is about 60%...not good odds.
Even with the drug for a year....about 20 % chance.

I have always been an optimist and been able to find positives somewhere even if tiny...it's getting really hard for me to find positives right now.

I do hear your frustrations and I understand them...trust me I do because of my own past issues with less than optimal sleep.
But you do have one positive even if it is a small one...your sleep quality has improved slightly...no it's not as much as you would like but it has improved.
Up to you if the slight improvement is worth continuing with the therapy with the hopes that it might continually slightly improve over a period of time or not. I look at it this way...we know how crappy things are without the therapy as evidenced by how you felt the one night where you abandoned therapy...and if there is even a slight chance of continued improvement then it's worth doing.
Because you know first hand just how bad things could be...which is the worse evil?
What are your options? Feel really bad or maybe not quite so bad?

To me some improvement is better than no improvement...even if that improvement is tiny.

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Re: xPAP still a disaster

Post by MaxINTJ » Tue Oct 17, 2017 8:42 am

Pugsy wrote:The biopsy was clear of the lymph node but apparently this particular form of cancer can spread into various other areas of the body (and likes to) without leaving a trace in the nodes.
All cancer is bad but there are varying degrees of bad...and hers happens to be the worst of the bad.
One of the major side effects of the drug is heart damage and she is 85 and her heart may not be all that strong.
If it isn't strong enough to with stand potential damage then the risk of the cancer popping up elsewhere is about 60%...not good odds.
Even with the drug for a year....about 20 % chance.

I have always been an optimist and been able to find positives somewhere even if tiny...it's getting really hard for me to find positives right now.
Best wishes for you and your mom - I hope she's strong enough for the treatment, and even if she's not, I'm hoping she falls into the percentage where it hasn't spread.
Pugsy wrote:I do hear your frustrations and I understand them...trust me I do because of my own past issues with less than optimal sleep.
But you do have one positive even if it is a small one...your sleep quality has improved slightly...no it's not as much as you would like but it has improved.
Up to you if the slight improvement is worth continuing with the therapy with the hopes that it might continually slightly improve over a period of time or not. I look at it this way...we know how crappy things are without the therapy as evidenced by how you felt the one night where you abandoned therapy...and if there is even a slight chance of continued improvement then it's worth doing.
Because you know first hand just how bad things could be...which is the worse evil?
What are your options? Feel really bad or maybe not quite so bad?

To me some improvement is better than no improvement...even if that improvement is tiny.
Of course you're right, if I'm only thinking of myself. I also have to take into consideration my wife's sleep, which is more interrupted by the xPAP. Because they're varying noises now, she finds it hard to ignore or get used to.

My biggest difficulty is that I don't like anything open ended. I want to know, "do xyz for x amount of time and you achieve ABC."

"Try this, that, and the other thing, for 1 day, or 1 week, or 6 months, or forever, and you might have this, that, or the other thing happen" does not sit well with me - it reminds me of calculus trying to get the sum of an infinite series. *runs away screaming*
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Diagnosis of crappy sleep, desats under 80, maybe UARS