Fired My Sleep Doctor

[Paper_Nanny]

I went to see my sleep doctor in March because I was feeling horrid. Prior to December, my AHI had gone from consistently below 5 (and often below 2) to being above 5 almost every night and having some nights that were above 20. The majority of the events during this time period were central apneas. The central apneas were usually in the range of 6- 7, but went as high as 15.6 and as low as 2.63.

Doctor made some slight changes to my settings. My original and changed settings were:

Max pres- 15 to 16
EPAP Min: 7.0 (no change)
EPAP Max: 9.0 to 12.0
BPM: 5 to Auto
PS Min: 2.0 (no change)
PS Max: 6.0 (no change)

My AHI came down a little bit. The events after the changes were primarily hypopneas. I still felt horrid most days.

I took my card in last week to have him look at the data. His nurse called me today to tell me that the doctor said there is nothing he can do that will make any difference to how I am feeling. He said the problem doesn't look like a sleep problem, that my numbers are great and I am having no central apneas.

He said my low energy is probably fatigue secondary to multiple sclerosis and to consult my neurologist. The only thing he can offer is another titration with my BiPAP, but he doesn't think that will accomplish anything.

I don't think my numbers look great. In the past month, half the nights, my AHI was over 5. Of the nights that it was over 5, half of that was over 9. Half the nights my AHI was under 5, but half of that was between 4 and 5. When I was feeling good, my AHI was consistently below 4. So, only 9 nights in the past month were what I would consider "good" as far as the numbers go.

I am so frustrated I am shaking. And I keep thinking, "What if this is as good as it gets? What if I never feel rested again?" And those thoughts make me want to cry. I am so tired of being tired!

I called my primary care doctor to get a referral to a different sleep doctor. The nearest other one is about two hours away, but I am done with the doctor here. (And I do believe he is done with me!) I did schedule an appointment on 21 June for the BiPAP titration because I don't know how far out the new doctor is scheduling. I would do the titration study if I can't get anything else done before then.

My last neurologist left. I have an appointment in June to see a new one. It was a new patient appointment to get established there, so I will have a neurologist when I need one. I may add my poor quality sleep to the list of things to talk about, if nothing changes between now and then.

If anyone has any suggestions about changes to make to my setting in the mean time, I would really appreciate it! There are graphs posted on page 1 of the "Feeling a Bit Discouraged" thread I started on the 18th. I could post more if that would be helpful and I would be happy to put them in a different thread, or put them in this one, if that would help.

[In December, I had my implanted medication pump replaced. I also had changes to the dose of medication. The medication is not pain medication.]

I edited the original post to clarify some of the information.

[Julie]

Have you downloaded Sleepyhead so you can show us your overnight results?

[ChicagoGranny]

I was having a lot of central apnea event

How many is "a lot"?

[ChicagoGranny]

How many centrals?

Sorry, duplicate post. Will delete.

[Paper_Nanny]

Have you downloaded Sleepyhead so you can show us your overnight results?

Here are the most recent five, excluding last night, because something weird happened the data.

[Paper_Nanny]

what do you have
i bet you need an ASV not a bipap or cpap
they can cause centrals to show up
adjust for no central and maybe hypopnea or other things make you tired

while it may be the MS or other causes
imho you should see a new better sleep doctor and ask about ASV not bipap

I have a PR System One BiPAP Auto SV Advanced. It's down in the signature line.

[Julie]

Almost all hypopneas (wannabe apneas), which makes me wonder if you're back-sleeping to any extent - that brings on a lot of events and if you can train yourself (presuming you do back sleep) to not do so, maybe wear a backpk with towels in it until you're used to not flipping over at night, it might help. Others more familiar with SH and graphs should be by soon.

[Paper_Nanny]

I was having a lot of central apnea event

How many is "a lot"?

I went to see my sleep doctor in March because I was having a lot of central apnea event and felt horrid most days. Doctor made some slight changes to my settings. My AHI came down a little bit. The events after the changes were primarily hypopneas. I still felt horrid most days.

That first paragraph was very poorly written. Here is a revised version. I will change it in the original post so people wouldn't have to read into the comments to get the information.

I went to see my sleep doctor in March because I was feeling horrid. Prior to December, my AHI had gone from consistently below 5 (and often below 2) to being above 5 almost every night and having some nights that were above 20. The majority of the events during this time period were central apneas. The central apneas were usually in the range of 6- 7, but went as high as 15.6 and as low as 2.63.

[palerider]

[quote="Paper_Nanny"Max pres- 15 to 16
EPAP Min: 7.0 (no change)
EPAP Max: 9.0 to 12.0
BPM: 5 to Auto
PS Min: 2.0 (no change)
PS Max: 6.0 (no change)

If anyone has any suggestions about changes to make to my setting in the mean time, I would really appreciate it! There are graphs posted on page 1 of the "Feeling a Bit Discouraged" thread I started on the 18th. [/quote]

if it were me, I'd open up the machine and see what it could do when given some range.

maxpres 25
epap min 7
epap max 15
ps min 1
ps max 18 (or whatever the maximum it'll allow you to set it to).

as Pugsy said, your machine settings pretty much have your ASV in a stranglehold, keeping it from doing what it's supposed to do, which is respond breath by breath to get you breathing as well as possible.

[Holden4th]

i bet you need an ASV not a bipap or cpap

You don't have enough information to make that determination!

Agreed. This is not something I would normally do but feel it is necessary.

Xxyzx has been posting on another Apnea forum inquiring about therapy and specifically with ASV. Despite a mountain of good advice from the members there, he will not post any data and completely ignores the advice he is given. He has now taken to responding to posts from new members who want advice as to how to begin their CPAP journey. From what I have seen, any advice he gives out should be taken with a grain of salt.

[robysue]

Have you downloaded Sleepyhead so you can show us your overnight results?

Here are the most recent five, excluding last night, because something weird happened the data.

Paper_Nanny,

As others have noted, the data you post shows almost exclusively hypopneas. Which are usually assumed (by sleep docs and most posters) to be obstructive in nature. Hence the common suggestions are to increase the pressure a bit and/or investigate whether you are doing a lot of back sleeping.

But you also write:

I went to see my sleep doctor in March because I was feeling horrid. Prior to December, my AHI had gone from consistently below 5 (and often below 2) to being above 5 almost every night and having some nights that were above 20. The majority of the events during this time period were central apneas. The central apneas were usually in the range of 6- 7, but went as high as 15.6 and as low as 2.63.

And this raises the question about whether the large number of hypopneas you are currently seeing might be central hypopneas rather than obstructive ones. And there's no easy way to answer that question without a night spent in a sleep lab.

One thing that can sometimes help in teasing out whether or not a long string of densely packed hypopneas might be central in nature is to compare a zoomed in look at the hypopneas to a zoomed in look at a stretch of breathing from the same person that has lots and lots of centrals flagged.

So I have a request: Can you go through your data and find a stretch of breathing on a night when your CAI was above 10 and zoom in on a 5-10 minute stretch of time so that we can see the individual breaths with the CAs flagged in them? Then zoom in on breathing for the data from 4/17 focusing on the time frame between 10:00 and 11:00. Post a couple of 10-minute stretches from that bad hour. The data has to be zoomed in enough to see the individual breaths. If there is not much similarity in the breathing pattern from the night wrere the events were labeled as CAs, then that points to it being reasonable to assume that your current hypopnea problem has a higher chance of being obstructive in nature. If the breathing pattern with the Hs looks almost identical to the breathing pattern with CAs, that raises the distinct possibility that your current problem is with central hypopneas rather than obstructive ones.

Some additional questions to consider at this point:

1) Do you feel as though you are doing a lot of tossing and turning on some nights? Is restlessness during the night a problem? Are you waking up frequently or having trouble getting back to sleep when you do wake up? If so, did this start around the time your AHI started to creep upwards?

2) Has anything changed in your life or health other than the deteriorating OSA problem? Are you under more stress at work or in your private life? Any new medical diagnoses? Any changes to medication?

Finally, have you had any luck in getting the sleep doc to look at the flow rate data your machine records?

[robysue]

paper_nanny,

Another thing that really jumps out in your data is the amount of time being flagged as "timed breaths". On four of the five nights you posted, you spent almost the entire night in "timed breaths". The only night without a lot of "timed breaths" is the night with the lowest AHI. All of that points to the hypopneas being central in nature rather than obstructive.

And in that case, Pale_Rider and pugsy are spot on when they say that your current ASV settings are not allowing the machine to do its job properly. It's well worth giving Pale_Rider's suggested settings a try.

[ChicagoGranny]

This is not something I would normally do but feel it is necessary.

Xxyzx has been posting on another Apnea forum inquiring about therapy and specifically with ASV. Despite a mountain of good advice from the members there, he will not post any data and completely ignores the advice he is given. He has now taken to responding to posts from new members who want advice as to how to begin their CPAP journey. From what I have seen, any advice he gives out should be taken with a grain of salt.

Why would you not do this on a routine basis? People that are giving out bad advice should be knocked back into their gopher holes. It can be very difficult for newbies to separate the chaff from the grain.

[LSAT]

This is not something I would normally do but feel it is necessary.

Xxyzx has been posting on another Apnea forum inquiring about therapy and specifically with ASV. Despite a mountain of good advice from the members there, he will not post any data and completely ignores the advice he is given. He has now taken to responding to posts from new members who want advice as to how to begin their CPAP journey. From what I have seen, any advice he gives out should be taken with a grain of salt.

Why would you not do this on a routine basis? People that are giving out bad advice should be knocked back into their gopher holes. It can be very difficult for newbies to separate the chaff from the grain.

I agree completely...but...then we are called "haters".

[Paper_Nanny]

[quote="palerider"]if it were me, I'd open up the machine and see what it could do when given some range.

maxpres 25
epap min 7
epap max 15
ps min 1
ps max 18 (or whatever the maximum it'll allow you to set it to). ]

Done!