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General Discussion on any topic relating to CPAP and/or Sleep Apnea.
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Paper_Nanny
 
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Feeling a Bit Discouraged

Postby Paper_Nanny on Tue Apr 18, 2017 3:26 pm

Up until December, I had been doing wonderfully well with my therapy. I was waking up feeling refreshed and re-energised. I generally felt good throughout the day. My AHI was consistently very, very low. In December, I had surgery and it appears to have increased my AHI. (I have an implanted medication pump and had it replaced in December. There were some changes made to the system at that time. There is little to no research about the effect of the medication on apnea. The efficacy of the medication is much better with the changes.)

It took me awhile to figure out why I was not bouncing back from the surgery. I finally realised that maybe it was sleep related when I was telling one of my doctors that I was waking up just as tired as when I had gone to bed. I downloaded Sleepyhead and checked out my numbers. My AHI was much worse than it had been and I was having one central apnea after another, all night long.

I got in to see my sleep doctor. He made some adjustments to my settings. I had a few nights of good sleep. But then my AHI has gone back up and I feel like I am losing my mind. I am so tired I am barely functional. I do not feel like myself at all. And I am feeling really, really hopeless. Like I will never get good sleep again... Like I am destined to live the rest of my life in a fog... Like I will never be thinking clearly again and will forever feel like I am barely holding onto my sanity...

When I went in to see the sleep doctor, he told me I needed to have the surgery reversed because he wasn't going to keep changing the settings on my machine to compensate for a problem caused by a change in the drug delivery system. I was horrified by this statement. I don't really think that is his call to make! And, I don't really want to have another surgery done to change it back unless absolutely necessary. I am wondering, though, if he CAN keep changing the settings to compensate or if there really is no solution to the problem other than another surgery.

Image
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BarbMarch58
 
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Re: Feeling a Bit Discouraged

Postby BarbMarch58 on Tue Apr 18, 2017 3:59 pm

Dear Discouraged,

I had to read your last few lines 4 times so I could believe what you had written... "He told me I needed to have the surgery reversed because he wasn't going to keep changing the settings on my machine to compensate for a problem caused by a change in the drug delivery system." You're horrified? Well, I'm mortified! I'm a retired health care attorney and I'm so upset right now I might repel myself through the ceiling!!

This is wrong on so many levels - I don't even know where to start.

Let me start here:
#1 This is NOT your fault at all.
#2 When you meet with him, do you feel "cramped" in the office - his ego must take up a whole lot of square space...
#3 You must immediately talk with the surgeon and discuss exactly what this sleep doctor advised - his/her response might be very interesting
#4 If your sleep doctor is associated (has admitting privileges) at a hospital, your second call should be to the "Ombudsman" - a team of people designed to handle patient quality of care issues - just like yours

Try these steps to start with. Re-post with any advances you've made; then we'll go on to actions that should be taken with regard to your situation.

When others get "Discouraged" (in a situation like yours) you need to get "Angry!"

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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Tue Apr 18, 2017 5:38 pm

BarbMarch58 wrote:Let me start here:
#1 This is NOT your fault at all.
#2 When you meet with him, do you feel "cramped" in the office - his ego must take up a whole lot of square space...
#3 You must immediately talk with the surgeon and discuss exactly what this sleep doctor advised - his/her response might be very interesting
#4 If your sleep doctor is associated (has admitting privileges) at a hospital, your second call should be to the "Ombudsman" - a team of people designed to handle patient quality of care issues - just like yours


#2-- Why yes! Yes, I do!!

#3-- I did talk to the doctor who manages the drug pump. He told me if the apnea were not treatable, it would be advisable to have things set back to where they were prior to December. BUT, if the apnea were treatable via the BiPAP ASV, then of course that would be advisable. The surgeon told me, in reference to something else, that he is in no hurry to do another surgery and if the issues could be addressed in a nonsurgical way, that would be preferable.

#4-- He is affiliated with our local hospital. He is also the only pulmonary, critical care, and sleep medicine doctor in our town. The nearest other place with a hospital and doctors is about two hours away. The hospital has been unresponsive when I have addressed other issues with them. My husband is in an allied profession. The hospital has been unresponsive in addressing issues he has brought to their attention. I feel like bringing this issue up with anyone will not result in any meaningful action.

And... I tried to find anything on the hospital ombudsman and came up with nothing. Same thing searching for patient advocate. I think it time for me to find a different sleep doctor. Which sucks, because that two hour drive is no fun, but it doesn't suck as much as having a crappy doctor!
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Pugsy
 
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Re: Feeling a Bit Discouraged

Postby Pugsy on Tue Apr 18, 2017 5:57 pm

So what are the settings now?
And are the flagged events obstructive or central/clear airway?
Is the medication a pain med?

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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Tue Apr 18, 2017 10:18 pm

Max Pres= 16
EPAP Min= 7
EPAP Max= 12
BPM= Auto
PS Min= 2
PS Max= 60

Currently, flagged events are hypopneas with some central apneas. Between December and March, events were almost exclusively central apneas.

Medication is not a pain medication.

Last night:
Image



Representative of data from December through March:
Image



Representative data prior to December:
Image
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Pugsy
 
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Re: Feeling a Bit Discouraged

Postby Pugsy on Tue Apr 18, 2017 10:33 pm

I wonder if those hyponeas are more central in nature....

Paper_Nanny wrote:Max Pres= 16
EPAP Min= 7
EPAP Max= 12
BPM= Auto
PS Min= 2
PS Max= 60


With PS limited to 6.0 the machine is having its little arms tied so it can't properly treat the centrals.ttt
Max IPAP at 16 is also restricting the machine's ability to move around. It needs to be able to go higher if needed for the centrals. I won't go anywhere without a good reason.

Does your SleepyHead Summary statistics show all the past settings and when the prescription was changed?
Can you get us a snap shot of the prescription changes shown on the summary report...and omit the pat triggered breath graph and instead include the pressure graph. Hide the calendar and turn off the pie chart on the left (Preferences/Appearance tab, remove check mark) so that the statistics on the left side will move up into view.

Looks to me like the doctor has severely limited the machines ability to do what it is designed to do with the restrictive settings.
It's not that difficult to come up with alternate settings to address your problem....don't know why he wants to be such a butt head about it.
I know it's not convenient to find a different sleep doc but this guys attitude sucks.

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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Wed Apr 19, 2017 12:28 am

Changes to Prescription:

Image

Pressure Graph:

Image


I have no idea why he wants to be such a butt about this. I am sure it is going to take some time to get a new sleep doctor. I am hoping the current doctor will be able to do something to get me sleeping better so at least I am functioning at a higher level while I wait!!
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Pugsy
 
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Re: Feeling a Bit Discouraged

Postby Pugsy on Wed Apr 19, 2017 8:57 am

Geez...if we are to believe SleepyHead's settings reporting...all he ever changed was BiFlex exhale relief.
Maybe SH settings reporting is off....I dunno...sometimes the settings are a bit buggy.

I have a sneaking suspicion that all those hyponeas are probably more central in nature than they are obstructive in nature.

I have one suggestion that shouldn't be a big deal...turn BiFlex off and see what happens. I doubt much will change but you never know and it's a tiny change.

The other ideas I have involve changing the pressure parameters....are you willing to do that yourself?

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Re: Feeling a Bit Discouraged

Postby Pugsy on Wed Apr 19, 2017 9:07 am

I gotta do some thinking about the pressures....it didn't max out like I thought it would so I am scratching my head a little bit here.

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jnk...
 
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Re: Feeling a Bit Discouraged

Postby jnk... on Wed Apr 19, 2017 9:48 am

Paper_Nanny wrote:. . . When I went in to see the sleep doctor, he told me I needed to have the surgery reversed because he wasn't going to keep changing the settings on my machine to compensate for a problem caused by a change in the drug delivery system. . . .

I interpret that to mean (or, guess that maybe that means) that the sleep doc feels the drug-delivery system is disturbing sleep and therefore that he is unable (not unwilling, unable) to fix that disturbance to sleep by changing settings on the machine. In other words, the sleep doc may believe that the sleep reports are reflecting disturbances to sleep that are showing up in the breathing numbers rather than the sleep report reflecting changes to breathing being at the root cause of the disturbances to sleep.

That said, it is still worth optimizing the settings on the machine, with Pugsy's help. That's always a good thing to explore fully, when able to.

Sometimes drug-delivery systems come with the side-effect of some disturbance to sleep. Sometimes the trade-off is well worth it. And sometimes it is possible for the body to get used to the drug-delivery system over time in a way that sleep is not as disturbed in the long-run as it is for the first several months.

My take is that maybe the doc is not so much telling you what to do or stating an unwillingness to be helpful to you but may be trying his best to state his perceptions on the root cause of the recent sleep disturbances. And he may be trying to give you food for thought for future decisions. That is just my guess, though, based on my personal belief that sometimes the docs with the most insight and the best intentions of being helpful are often the ones who have the worst communication skills.

Keep at it. It is worth it.

-jeff

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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Wed Apr 19, 2017 12:03 pm

Pugsy wrote:Geez...if we are to believe SleepyHead's settings reporting...all he ever changed was BiFlex exhale relief.
Maybe SH settings reporting is off....I dunno...sometimes the settings are a bit buggy


He changed Max Pres from 15.0 to 16.0; EPAP Max from 9.0 to 12.0; BPM from 5 to Auto; and changed the BiFlex. Everything else was the same.

I have a sneaking suspicion that all those hyponeas are probably more central in nature than they are obstructive in nature.


Yes, that is my guess, too.

The other ideas I have involve changing the pressure parameters....are you willing to do that yourself?


I took my card in on Monday to have him look at the results of the changes he made on 3/21. If he isn't responsive to that dat, then yes, I am willing to make changes myself.
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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Wed Apr 19, 2017 12:14 pm

jnk... wrote:Sometimes drug-delivery systems come with the side-effect of some disturbance to sleep. Sometimes the trade-off is well worth it. And sometimes it is possible for the body to get used to the drug-delivery system over time in a way that sleep is not as disturbed in the long-run as it is for the first several months.


I hadn't thought about my body possibly getting used to the change in the system. I guess that is possible. I always expect these things to be more immediate. Thank you for the reminder to add a little patience into my thinking. It is hard to be patient, though, when I am so freaking tired!!

My take is that maybe the doc is not so much telling you what to do or stating an unwillingness to be helpful to you but may be trying his best to state his perceptions on the root cause of the recent sleep disturbances. And he may be trying to give you food for thought for future decisions. That is just my guess, though, based on my personal belief that sometimes the docs with the most insight and the best intentions of being helpful are often the ones who have the worst communication skills.


Yes, I think he does believe (and probably rightfully so) that the sleep disturbances are a result of changes in the drug delivery system. Even though there isn't a lot of research to back up the claim that the drug effects breathing, the data off my card shows a pretty good correlation between increase in apnea and change in medication delivery system.

Based on previous interactions with this doctor, though, I am less inclined to give him the benefit of the doubt. Throughout my entire time as his patient, he has been... difficult to deal with. But, your comments are a good reminder to not let past interactions totally colour my current interactions. The man does have horrible communication skills. Maybe your interpretation does have some truth to it.
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jnk...
 
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Re: Feeling a Bit Discouraged

Postby jnk... on Wed Apr 19, 2017 12:38 pm

In my opinion, ALL drugs have an effect on sleep, and all delivery mechanisms have an effect on sleep. But my position is that there are very few things in life that have zero effects on sleep.

I also believe that the body works desperately to find a way to get the sleep it needs and can find ways to work around many of the effects of drugs or other influences. There are only a few things it can't find a way past--such as obstructions and events that continue to cause the nervous system to interrupt what the brain is doing during sleep. When there are long-standing sleep issues, the body/brain can become overly vigilant for a while with anything that happens during sleep. That means that some sleep issues that follow changes in life, medical or otherwise, can resolve on their own with time as the body learns that what is happening isn't a threat and gets more comfortable with it.

So patience, within reason, can be a good thing.

Most men have less-than-ideal communication skills, especially attempting to communicate well with females about things that matter. Becoming a doc doesn't always fix that. And some docs with bad people skills seem to move toward the sleep-doc gig, which often doesn't involve that much direct interaction with patients. With some male docs, they seem to do a lot better at it when you have a male relative in the room with you during any discussions. It's a shame that it often works that way, but it's often true, nevertheless, in my opinion.

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Re: Feeling a Bit Discouraged

Postby palerider on Wed Apr 19, 2017 6:43 pm

could you do a few things, and redo the screen shots, please?

turn off the calendar, and right panel. (f9 and f10).

arrange the charts so we can see flags, flow, pressure and leaks.

how-tos:
https://sleep.tnet.com/resources/sleepyhead/shorganize
https://sleep.tnet.com/reference/tips/imgur

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Paper_Nanny
 
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Re: Feeling a Bit Discouraged

Postby Paper_Nanny on Fri Apr 21, 2017 12:29 am

I think this is formatted how you wanted it, palerider. If not, let me know and I will fix it. I included a few different kinds of nights here. Let me know what else would be helpful to put up.

Last night:

Image

A really bad night:

Image

This was a good night:

Image

Here is one post surgery before any changes were made. I had been at these settings for a long, long time and prior to the changes in my medication pump, I had consistently good sleep and low AHI.

Image
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