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Looking for some help - almost 5 years and not feeling a lot better
#91
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 11:11 AM)Crimson Nape Wrote: I see you posted while I was editing my last post.  You are correct about PS.  However, PS can cause initial pressure induced CA's that the body will become accustomed to and adjust accordingly.   Think about it as sticking your head out the window of a fast moving vehicle.  Your first reaction is not able to breathe (that and your eyes water).  After a few seconds you are able to breathe.  This is the same with a CPAP.  Increased pressure may cause a monetary pause of your breathing.

That's what I was thinking.  So perhaps it's best to tough it out another day or two before making changes?
If no progress then reduce PS a little?  If so, how far to drop initially?  Half a point?  (0.5 or so?)
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#92
RE: Looking for some help - almost 5 years and not feeling a lot better
I apologize for not providing you with the help you're looking for. I will bow out, with the hope that someone else can help.

Again, my apologies.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

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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#93
RE: Looking for some help - almost 5 years and not feeling a lot better
It is correct higher PS may induce higher CA, but as mentioned you can get used to it. OK so we can go forward from here, how about we forget OSCAR and any numbers for 1 minute so you can answer the following 2 questions. I am assuming from comments that therapy is not helping yet.

Answer 2 questions. 1) Despite being on PAP therapy for years, how long do you think apnea was an improperly or untreated issue? Include those years on PAP but wasn't set properly or otherwise. 2) How is therapy not helping now?
Again don't refer to any numbers, just say I don't feel well because X...

Part of my fishing expedition now is to find some direction and answers for you. Example if you say answer to number 1 is 20 years, do note good therapy may not make a positive effect for months. Be aware that you'll need to keep at it consistently for months on end to see benefits. Yes some see or feel results immediately, but the reality is most do not. After 1 month, I felt the benefit and my untreated apnea were from about 20 years of hindsight supposed apnea suffering. Unfortunate it's not a light switch and we turn on therapy and we're better just like that. You have years of a health issue to undo, and years to undo isn't done on Monday when you started good therapy as an example.

So tell us what is still wrong and we can direct the help that way.
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#94
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 03:10 PM)Crimson Nape Wrote: I apologize for not providing you with the help you're looking for.  I will bow out, with the hope that someone else can help.

Again, my apologies.
I do apologize to you, if I have offended you in any way.  It certainly was not my intent to turn away help or insight.  Sorry to have been too forward, vigorous, obnoxious or pointed.  

I'm humbly seeking some guidance so I can get a little better.  It's proven to be a long journey for me, far longer than I thought it would ever be.  At times it's been difficult to have hope.  AB has been a beacon of hope for us sufferers.  True, many people with issues, but also many people actually making progress.  I'd like to in some small way to be one of those people.

Again, Crimson Nape, forgive my ill behavior, it was not personal in any way, I have wrongfully let my stresses bleed onto these pages.  I'll not do that again.  If you can help I'd be eternally grateful.  Thank you.

Please, one last comment, my language was meant to be more metaphorical than actual.  The abyss is not my depression.  I'm not depressed.  The mountain tops are figurative.  I got a little carried away with my language.  The only thing that's a bit depressing, more accurately not happy, is the fact that I'm not sleeping that well.  With peoples help, and some time, that can be changed for the better.

Crimson Nape, please don't bow out.
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#95
RE: Looking for some help - almost 5 years and not feeling a lot better
I'm result oriented and tend to leave out a lot of the blah-blah-blah between here and there. Initially, I recommend a simple adjustment in an attempt to see if it may work for you. It didn't. I like to remove as many variables as possible, becoming more granular, when trying to deal with a problem. Based off of this thought process, I was suggesting that you take the variable pressure out of the mix. That way you will have one inhale pressure and one exhale pressure. This should indicate whether you are responding to the pressure or the pressure changes.

It's your call if you deem this logical and wish to pursue it. If anyone else has any insights, please don't hesitate to jump in here.
Crimson Nape
Apnea Board Moderator
www.ApneaBoard.com
___________________________________
Useful Links -or- When All Else Fails:
OSCAR Chart Organization
Attaching Images and Files on Apnea Board
Beginner's Guide to Sleepyhead and OSCAR
Apnea Helpful Tips

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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#96
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 04:10 PM)SarcasticDave94 Wrote: It is correct higher PS may induce higher CA, but as mentioned you can get used to it. OK so we can go forward from here, how about we forget OSCAR and any numbers for 1 minute so you can answer the following 2 questions. I am assuming from comments that therapy is not helping yet.

Answer 2 questions. 1) Despite being on PAP therapy for years, how long do you think apnea was an improperly or untreated issue? Include those years on PAP but wasn't set properly or otherwise. 2) How is therapy not helping now?
Again don't refer to any numbers, just say I don't feel well because X...

Part of my fishing expedition now is to find some direction and answers for you. Example if you say answer to number 1 is 20 years, do note good therapy may not make a positive effect for months. Be aware that you'll need to keep at it consistently for months on end to see benefits. Yes some see or feel results immediately, but the reality is most do not. After 1 month, I felt the benefit and my untreated apnea were from about 20 years of hindsight supposed apnea suffering. Unfortunate it's not a light switch and we turn on therapy and we're better just like that. You have years of a health issue to undo, and years to undo isn't done on Monday when you started good therapy as an example.

So tell us what is still wrong and we can direct the help that way.
I'm up for this Dave.  No numbers.

1) 
One, I probably have had apnea a long time.  It probably long predates 2005, so I'd guess 1985 or so?  Maybe even earlier.  As I explained in an earlier post, I was a burst person.  I'd be awful (unproductive) for days, and then somehow I would have a "good" day.  During that good day, I'd finish everything that was undone, and then some.  It sort of allowed me to coast through the bad days to get to the next good day.  I strongly suspect this really was apnea at work.  Never could predict when those good days would be.  It was uncommon to get a lucky string of two good days in a row.  

In 2005, I started getting debilitating cluster headaches, after getting really sick.  This headache phase lasted for 5 years.  I truly was very distraught.  From 2005 to about 2010 I was treated for headaches not apnea.  Nothing really worked.  It was like having elephants jumping on my temples all the time.  The elephants jumped at least 6 days a week.  Needless to say, it could make a person crabby at times.  

Late 2009, by an odd awakening in the night time I found myself alert and somewhat gasping for air.  Prior to that point, I had no inkling of apnea.  It wouldn't have surprised me if during 2005-2010 that my headache doctors asked me about it and I denied it.  It was night time, and I was asleep (mostly) and I was not aware of the arousals.  After my awakening (figuratively and literally) I asked my spouse and she said I snored at times.  I contacted my doctor who arranged my sleep study in 2010.  The initial test said possible UARS.  Of course the second titration test seemed to ignore that and proceeded to titrate for CPAP.  The report neither confirms nor actually denies UARS, although in a talk with my pulmanologist, he told me, "you have micro-arousals", but we have to call it apnea to get you a machine.  For 5 years, I had a brick.  Slowly, the headaches started to subside.  So that was a benefit.  But I never felt refreshed.  I felt like I had to drag my sack of potato body out of bed and get moving for the day.  It was always hard.  But I soldiered through the years.  Never feeling good, having random slightly good days with no pattern whatsoever, but mostly tiring unrefreshed days.  I was eating a healthy diet and was taking care of myself and still do.  I used to bicycle a lot.  No medical tests indicated any problems.  If I went off CPAP, say as a trial, life was even more awful, headaches would start again.  So having CPAP was better than not, but it wasn't good.  No happy days if you know what I mean, just days to get through, somehow or another.

In 2015 I got a new machine.  It was a Respironics APAP, set to CPAP mode by my DME.  I insisted on getting a machine with some kind of data logging.  I wanted to learn more about what was happening and wanted to see if I could find any pattern to my sleep issues.  Well that was far more complicated than I naively hoped.  My therapy really hadn't improved with the 560, so I asked for a second sleep study.  It happened in April 2015.  To be honest, it was the most unencouraging thing I've undertaken.  I got the "you are under AHI=5" you are treated talk.  There was no discussion of change in regimen, or treatment.  The doctor looked at the summary data on his software (for compliance) and never looked at any waveforms to see if there were issues.  He felt it was absurd to look at this "non-medical" data captured by the APAP machine.  It was disapprovingly noted that I had dared to try APAP mode for a few days.  So I looked to Apnea Board.  Over the years I've made minor incremental changes, to the extent that I could, but I never really achieved feeling any better than at the end of 2014.  Dragging my sorry body out of bed, dragging myself to work, trudging through the day, feeling somewhat weary, and not having much in the way of a spark.

This last two years has been a lot of stress, my dad died from Hodgkin's Lymphoma in 2019, and I've been dealing with mom ever since.  To make it more fun, I was laid off in early 2019 as I was coping with caring for both my mother and father.  In the past two years, the therapy has worked less well.  By that I mean, I was now getting dull headaches, and I still had that dreadful problem of dragging myself out of bed.  It was no easier to trudge through the day.  The days were long, and I just felt like I hadn't slept for years.  Just had to drag myself along, and had to motivate myself to do something productive.  It was and still is hard.

I have one odd thing to note - all during this period, on the rare days this happened, I had a great night's sleep.  But it was extremely hard on me.  What I noticed was, if I had done an extreme amount of physical labor or exercise to the point of total physical exhaustion, often I was rewarded by a decent nights sleep.  However, this never exceeded 3-4 days a year.

Now since transitioning to the bi-level I'm going through an adjustment phase.  Have to admit I wasn't expecting the severity of the transition.  Thought, perhaps naively, it would be easier.  The first night I had a lot of CA.  The next day I was entirely wiped out.  I was totally non-functional.  I could not drive, nor even walk around the yard.  I was totally depleted.  Felt like I hadn't slept for a hundred years.  And the elephants started up again.  Fortunately they were not dancing, just moving about a bit.

Second night was considerably better.  Third was better yet.  Headaches were mostly gone.  Fourth, mm, a minor setback, headaches are back.  Kind of a dull thing with an occasional throb.

2) Well therapy isn't dialed in.  I have a throbbing headache at the moment.  All I know is if I've slept pretty well, for long enough they go away.  The headaches have come back.  In the beginning it was due to no therapy at all, now it seems to be the therapy is not quite matched to what my body needs.  Oh and I am tired, physically and mentally dragging.  I'm afraid to use equipment because I don't want to injure or kill myself.  I know it only takes a moment of inattention to operate some of this equipment.  And I know (mostly) when I am capable of operating the equipment.  I don't have enough quality attention (most likely due to sleep issues) to operate safely.  And this feeling has gone on for a month now.

I hope this gives a little insight.  It's kind of hard to write this, it's like baring your soul, but it's necessary to 'talk' to get some help.  If you need more, please ask.
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#97
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 05:05 PM)Crimson Nape Wrote: I'm result oriented and tend to leave out a lot of the blah-blah-blah between here and there.  Initially, I recommend a simple adjustment in an attempt to see if it may work for you.  It didn't.  I like to remove as many variables as possible, becoming more granular, when trying to deal with a problem.  Based off of this thought process, I was suggesting that you take the variable pressure out of the mix.  That way you will have one inhale pressure and one exhale pressure.   This should indicate whether you are responding to the pressure or the pressure changes.  

It's your call if you deem this logical and wish to pursue it.   If anyone else has any insights, please don't hesitate to jump in here.

Thank you for coming back.  I understand your approach.  Thank you for explaining it.  I was not understanding it previously.  It seems logical, although at this moment, I'm not quite sure how to implement on my new to me machine.

I have to go off to eat now.  I'll be back.  I'm thinking this over.  Thanks.
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#98
RE: Looking for some help - almost 5 years and not feeling a lot better
Easy to say it sounds familiar, but it is true. That is similar to my untreated apnea time in the past. I have had headaches more or less, mostly the morning headache that lingers on being a more difficult one to deal with. I know that keep plugging away is also easier to say than to do, but it seems all of us here on AB have some area that we've had to show a not quit attitude and keep at it. I'm in a redo now of my therapy that I'd rather not face, but I must or live with untreated apnea. Not an option. So plug away unceasing. We can help to get this in the past, just commit yourself to do what you must. Fight the fears, the disappointing not helping immediate aspect, and the docs and whatever else is needed to keep at it.

It's not visible in our AB rules, but it says Rule 22 or somewhere along there that we are not allowed to quit. So don't. Coffee
Dave

OSCAR
Standard OSCAR Chart Order
Mask Primer
Dealing With A DME
Soft Cervical Collar Wiki
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEBSITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#99
RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 06:11 PM)SarcasticDave94 Wrote: Easy to say it sounds familiar, but it is true. That is similar to my untreated apnea time in the past. I have had headaches more or less, mostly the morning headache that lingers on being a more difficult one to deal with. I know that keep plugging away is also easier to say than to do, but it seems all of us here on AB have some area that we've had to show a not quit attitude and keep at it. I'm in a redo now of my therapy that I'd rather not face, but I must or live with untreated apnea. Not an option. So plug away unceasing. We can help to get this in the past, just commit yourself to do what you must. Fight the fears, the disappointing not helping immediate aspect, and the docs and whatever else is needed to keep at it.

It's not visible in our AB rules, but it says Rule 22 or somewhere along there that we are not allowed to quit. So don't.  Coffee
I am a full subscriber to Rule 22!  It's why I am here.  It's why I got a new machine on my own nickel, despite the financial set back.  Good luck to you in your efforts.
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RE: Looking for some help - almost 5 years and not feeling a lot better
(10-27-2020, 09:10 AM)Crimson Nape Wrote: The dragging feeling can be caused by arousals from the pressure changes or the slight flow limitations.  It appears that your CA's occur when the pressure increases. Your few OA's and Hypopneas look positional, so I am discounting them for now.  You may not be tolerating pressure changes well.  You might try the "S" mode.  Setting your EPAP to 8 and your IPAP 12.  (or, VAuto mode with the EPAP=8, PS=4, and IPAP Max=12) You can leave the Trigger alone for now.  Now that you have a baseline of the variable pressure, one night should show if this is going in the right direction.

Keep these 2 things in the back of your mind; 1. You don't know how long you had apnea before it was diagnosed and, 2. Everything you do from now on, is a step in the right direction.

Looking forward to seeing your next chart.
Getting back to your post much earlier today.  I'm afraid it went way over my head this morning.  Probably due to my dulled comprehension.  Just now looked at "S" mode in the Clinician Manual.  This appears to be a special "CPAP" mode with fixed EPAP and IPAP.  The EPAP and IPAP cannot vary.  The other mode you recommended, was VAuto with EPAPmin=8, PS=4, & IPAPmax=12.  If I understand this is equivalent to the first setting.

Ok, now finally this makes sense to me: "This should indicate whether you are responding to the pressure or the pressure changes. "

I'm good with this.  Do you mind if I slightly modify to have a PS=3.6?  That's what I've had for three days now.  Don't want to change too many variables.  

Would the settings then be VAuto: EPAPmin = 8.4, PS=3.6, IPAPmax = 12 ?  If you would confirm, I'd appreciate it immensely.  Thanks so much!
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