so very tired and it isn't getting better

I've been trying to get the full nocturnal polysomnogram (NPSG report) for both my diagnosis night and my titration night from my sleep doctor and I've hit a brick wall. All he and the office tech say I will get is the three page doctor's summary that I already have. They claim they don't even have a template for what I am asking for...apparently between the three page summery and what would be 1000s of pages of raw data, there is nothing they can/will give me. So I am NOT going for the scheduled appt at the end of May, with this doctor, for another NPSG (night study) and MSLT (day study).

I've spent the last approx 5 weeks on an APAP set at 10/11 to 17 and each night's results contain almost a constant string of hypopneas and apneas. Last night, as an example, I slept 6 hours with over 40 apneas and over 100 hypopneas. I'm exhausted and do not feel any better on XPAP than before I started XPAP. Of course, I was exhausted before XPAP too.

I have an appointment with a new sleep doctor for tomorrow. During my titration test in Feb, I never got into Rem sleep, in fact I never got past stage 2 sleep. I think that the deeper I sleep, the less I breath so I'm in a catch 22...don't sleep and keep breathing...fall into deep sleep (which I know my body has to have) and stop breathing. Sometimes my apenas last longer than 30 seconds...I'd really hate adding too many of those together in one hour.

I'm feeling pretty upset right now. It helps that I was able to make a new appointment with another doctor for tomorrow. I'll settle down and have my act together and forge on. I just need the doctor to help me to find the right machine or whatever I need. The doctor that sent me home with the machine I have now, had my settings locked at 4-17 and of course there was no way for me to see the results until I unlocked the machine and bought the software. And that was the way it was going to be...

What more can I do to get help myself? I've been very willing to make any changes I could to take care of leaks (none at all with the mask I use now), acid reflux (went to a gastro and am on treatment that is working very well), etc...I've fixed what I can and I don't think there is much more I can do to make things better. I know my bad readings aren't caused by anything I can fix myself.

Boy, I am feeling like a whiny cry baby but I'm really really tired and extremely frustrated.

mar

So what kind of leak rate are you getting?

You may well be leaking the air out your mouth while asleep.

Are you able to post a plot of nightly data representative of most of your sleep nights?

DreamStalker wrote:So what kind of leak rate are you getting?
You may well be leaking the air out your mouth while asleep.
Are you able to post a plot of nightly data representative of most of your sleep nights?

My nightly leak rate has been 0 for just about every single night and I wear a chin strap that is doing a great job of keeping my mouth shut...I don't even have air trying to get through my lips.

I will post some of my nightly data...be right back!

BTW, of all the monkeys, your avatar my very favorite...makes me laugh every time I see it

mar

mar i hope you get some good advice here, i know i would be upset and banging on my doctors door if i had that many apneas with a zero leak rate. Good luck.

robertmarilyn wrote: I've been trying to get the full nocturnal polysomnogram (NPSG report) for both my diagnosis night and my titration night from my sleep doctor and I've hit a brick wall. All he and the office tech say I will get is the three page doctor's summary that I already have. They claim they don't even have a template for what I am asking for...apparently between the three page summery and what would be 1000s of pages of raw data, there is nothing they can/will give me. So I am NOT going for the scheduled appt at the end of May, with this doctor, for another NPSG (night study) and MSLT (day study).

Placing the NPSG reports issue aside for a moment, Mar... This doctor has quite a few redeeming qualities at first glance. The fact that he wants to take another closer look, including that MSLT puts him head-and-shoulders above many sleep docs.

You also mentioned in a PM (that I didn't get a chance to reply to yet---still mulling) that he wants to measure what's happening as you use your APAP. I personally think that somewhat unusual request may reflect a doctor willing to go the extra distance to isolate problems in treatment and/or sleep itself. On that basis, I personally wouldn't give up on that doctor just yet.

I would recommend that you exhaustively continue to chase down CPAP treatment and sleep diagnosis for all that it's worth. Unfortunately UPPP surgical treatment can be a CPAP spoiler. So there may come a day when you absolutely have to play out a different option. So put my following comment to SaltLakeJan waaaay on the back burner as a worst-case contingency---but a contingency that some view as a treatment blessing:

UPPP surgery can sometimes make effective CPAP treatment extremely difficult. And not everyone happens to have just the right physical traits (craniofacial characteristics) to benefit from a dental appliance. So you're right to chase down or explore whatever optimum CPAP therapy has to offer. In the unlikely event that CPAP can't somehow adequately address your obstructions, there's always the option that Dr. Mack Jones selected for himself:
http://www.sleepguide.com/profiles/blog ... vere-sleep
But that technique will only address obstructive apneas and hypopneas versus central ones.

Hope you are lucky enough to hear plenty, plenty, plenty from other posters in this thread. More thoughts from me as this thread unfolds as well...

I could write a book on being frustrated with Docs. My opinion is that if you do not recieve what you need from your current Doc, by all means seek out another if this is a viable option. I am only 2 nights in with my BiPAP (no immediate effects yet) so my wisdom is zero for treatment/data issues but I have been thru 7 Docs in the last 11 months, the last one was the only one who would discuss the sleep study with me, so do not be afraid to question your Doctor, while educated they are not Gods and you are not their only patient, stand up for your rights. Docs are a service industry, not royalty, do not be afraid to switch after you have exhausted everything they have to offer.

My 2 cents anyway.......

Phil

I want to thank each of you for responding. It means a lot to me. You folks understand how I feel better than anyone I know in my face to face world.

-SWS, your support privately and your posts that I read on the forum have been very helpful and because of that, I continue to read what you write. So I had already read what you wrote to SaltLakeJan and had followed the link
http://www.sleepguide.com/profiles/blog ... vere-sleep
to what Dr. Mack Jones has written. I can't convey how much I do not want to go that route and I know if I were to ever have to do so, I'm going to have to be sure I can really handle it emotionally and mentally. So I do have that logged in the archive of my mind and my computer but will do whatever I can do to avoid it.

-SWS, your words about my current sleep doctor have helped me also. It is so hard for me to understand his thought process when he gives me so little to go by. I'd still be puttering along on settings of 4-17 with no hope of change if I hadn't made three appointments to talk to him. But each appointment has gotten me a little farther...because of what you have said, I will consider keeping my end of May appointment for both studies.

Phil, I would have never even met the sleep doctor if I hadn't taken it upon myself to make appointments to speak with him. And each time he has expressed surprise that I was so educated on sleep apnea and the machines and that I understood both so well. He seems like a very skilled and knowledgeable doctor and I know I am not a typical patient in a lot of ways...esp when I have had a UPPP 15 years ago and that fact can possibly interfere with XPAP treatment or else make it totally out of the picture as an option. I will keep you all posted on how things go as this progresses.

Dreamstalker, as you may have read in -SWS's post, I have had a UPPP and this might distort the entire picture as far as my data goes from my machine. But I searched through posts on this forum and found excerpts between JoyD and Elader that have given me the hope that I can provide a copy of last night's detailed data from my machine. I see that you asked about a plot of nightly data representative of most of my sleep nights. Do you mean my summary data or do you mean me listing the info by hand in a post? I can give you either one...just let me know which is most helpful.

In the next post, I will show my detailed data for last night.

And thanks Bob! Your well wishes mean a lot to me...it is hard to be patient when I've been tired so long (most of my life), esp when I know that the UPPP situation makes things harder to treat...you can't imagine how willing I am to be compliant with a machine...I do not want to go the most drastic route.

And because two smiling faces totally negate one crying sad face, I will end with a face.
mar

Let me know if this is the wrong way to go about showing my data please.

Very strange.

Your leak is indeed very good very flat indicating very good seal.

Your min pressure setting of 11 is effectively reduced to 9 by use of EPR setting of 3.

Your average pressure never really changes ... so it appears that the APAP algorithm is not responding at all to your events.

Maybe trying CPAP mode at 12 cm w/EPR at 2 would help reduce those events?

Mar,
If you've already had a UPPP, you may not be having the kind of events that will drive the pressure up on any auto, and the Resmed will not raise pressure for hypopneas at all or for standalone apneas in response to apneas above 10 cm /h2o anyway. Does the sleep doc. know you've had it? Do you have snores on your PSG report?

I'd try for a fixed pressure - 12 looks like a good place to start.
Or, if you really need auto, you may do better on a machine with a different algorithm - one that responds to hypopneas.

O.

I agree about this machine's algorithm probably not being suitable. In summary of above comments:

Apneas: Her min pressure is set at 11, so the Resmed AutoSet algorithm won't respond to any apneas at all above 10 cm by design (all of her residual apneas)
Hypopneas: She has mostly hypopneas, but the Resmed AutoSet algorithm won't respond to any hypopneas by design

That leaves snore signal and flow limitation signal ("wave flattening") to drive that algorithm. But a post-operative UPPP patient may not present either of those crucial signals in sufficient quantities to the AutoSet algorithm either.

That's not where the treatment dilemma ends. Mar likely needs a higher pressure to keep that post-operative UPPP airway open (large base of tongue now has even more room to recede and thus block inspiratory flow). Yet, more air pressure just creates havoc on her aerophagia---at least it created havoc before acid reflux treatment. Also, considerably more pressure above that statistical 10 cm point needs to be monitored during a PSG to make sure that pressure-induced central apneas don't run away.

So what's the status with aerophagia at higher pressures now that acid reflux is under better control, Mar? Unfortunately, acid reflux medication does not always result in a tight LES seal. Mine is absolutely terrible to this day.

ozij wrote:Mar,
If you've already had a UPPP, you may not be having the kind of events that will drive the pressure up on any auto, and the Resmed will not raise pressure for hypopneas at all or for standalone apneas in response to apneas above 10 cm /h2o anyway. Does the sleep doc. know you've had it? Do you have snores on your PSG report?
I'd try for a fixed pressure - 12 looks like a good place to start.
Or, if you really need auto, you may do better on a machine with a different algorithm - one that responds to hypopneas.
O.

I don't snore and as far as I know, really can't snore with the UPPP. My husband says he has never heard me snore. The doctor knows I've had a UPPP and he did indicate that having one isn't a good thing. On the diagnosis study and the titration study I just have the 3 page summary reports and there is no mention of snores on them...the doctor won't give me anything more detailed than those 3 pages.

As I have read about the machines and their different algorithms I realized that the Resmed may not be the right machine for me. I tried to discuss that with the doctor and showed him my detailed nightly data and he brushed all the apneas and hypopneas off as I was probably moving around and my mask was leaking...I told him I had 0 leaks and his only response (when he looked down at the leak data) was "Yeah you're right" and then he began grilling me (again) about where I got the software from (a friend) and how was I able to understand it and my machine so well (I studied up on it since my first sleep test on Feb 21).

I need a prescription to get another machine and he has that prescription. I know he is supposed to give it to me but I haven't tackled that yet...I need help deciding what machine would work for me...I'm not to the point of being able to figure all of this out well enough to choose exactly what machine would work for me. Seriously, sleep deprived as I am, I'm doing good to have learned as much as I have so far. So I would really like to work with the doctor and have him work with me.

The very first week I was on a machine, I was sent me home with the Resmed Escape set on 14 and no pressure relief. I was using the Quattro in small size but then was able to exchange it for the xsmall size. Neither of those fit me very well and I was really struggling that week with both the mask and machine. I couldn't exhale with setting of 14, had acid reflux all night long and could hardly stand up in the morning due to aerophagia (I had no idea what aerophagia was until that week and I had no idea I had an acid reflux problem until that week).

So I made an appointment with the sleep doctor to talk to him and that was the first time I had ever met him. He did send me home with a Autoset II (set on 4-17 and with me locked out of anything) and a Swift LT for Her (works well for me with a chin strap). I saw a gastro doc about the acid reflux and meds seem to be helping a lot. I found out how to change the settings on my machine and have tried setting the lower pressure on 9-13 and tried various EPR settings. Also have tried some nights with the machine on CPAP setting. I haven't had a good night yet.

When I was in his office the last time on April 17, they measured my oxygen level and it was 88-90. He did have me get a pulmonary function test and chest xray and those came back 'normal'. He is a pulmonary doctor along with being a sleep doctor and he was the doctor who read the test results.

-SWS wrote:I agree about this machine's algorithm probably not being suitable. In summary of above comments:

Apneas: Her min pressure is set at 11, so the Resmed AutoSet algorithm won't respond to any apneas at all above 10 cm by design (all of her residual apneas)
Hypopneas: She has mostly hypopneas, but the Resmed AutoSet algorithm won't respond to any hypopneas by design

That leaves snore signal and flow limitation signal ("wave flattening") to drive that algorithm. But a post-operative UPPP patient may not present either of those crucial signals in sufficient quantities to the AutoSet algorithm either.

That's not where the treatment dilemma ends. Mar likely needs a higher pressure to keep that post-operative UPPP airway open (large base of tongue now has even more room to recede and thus block inspiratory flow). Yet, more air pressure just creates havoc on her aerophagia---at least it created havoc before acid reflux treatment. Also, considerably more pressure above that statistical 10 cm point needs to be monitored during a PSG to make sure that pressure-induced central apneas don't run away.

So what's the status with aerophagia at higher pressures now that acid reflux is under better control, Mar? Unfortunately, acid reflux medication does not always result in a tight LES seal. Mine is absolutely terrible to this day.

The aerophagia has been much better since that week when I was on the CPAP at a unrelieved pressure of 14. And I do think it took getting the acid reflux responding to treatment to lessen the aerophagia even more. The sleep doctor told me the only time I could be swallowing air is if I was gulping food or running really hard. But I never have swallowed air as an eater or a runner ...this is a whole new thing with me and it started with me being on the machine.

I went to the gastro doctor earlier this month and had an upper endoscopy (I assure you that going to doctors and getting procedures and tests is not something I enjoy...I'm doing this though so things can be ruled out and we can have a clearer picture of what might be going on.) The impression says: Normal esophagus. Gastric mucosal abnormality characterized by erythema. Biopsied. (Results were: Normal)

The recommendation says: Use omeprazole at 20 mg PO daily (this seems to be working well so far). Consider GES (an electrical implant under the breast bone to help the LES contract normally) or a trial of Reglan (once again, this is to help the LES contract normally). I'd rather not have a GES implanted and Reglan seems to have some permanent and unpleasant side effects.

Usually my Autoset doesn't go above 13 or 14 for very long (I saw that it went up over 15 once) so I haven't had to endure those pressures for very long at a time. Tonight I could set the pressure at 12 although I wouldn't mind trying 13 or 14 to see if I can handle those pressures longer (and to see if I have better results than I had so far) now that my acid reflux seems to be better.

It's funny, when I first came on this forum I read something about a LES seal and about how it can be not tight enough and something told me to cover my eyes and ears and don't look or listen to that talk...same with Dr Mack Jone's fix for treating sleep apnea after a UPPP...I'd like to ignore talk like that but at the same time, I know my body has had things about it that were not right, from the very beginning. It would be nice if there were LES exercises we could do to help it get nice and tight and working right (a poem ).

DreamStalker wrote:Very strange.
Your leak is indeed very good very flat indicating very good seal.
Your min pressure setting of 11 is effectively reduced to 9 by use of EPR setting of 3.
Your average pressure never really changes ... so it appears that the APAP algorithm is not responding at all to your events.
Maybe trying CPAP mode at 12 cm w/EPR at 2 would help reduce those events?

Tonight I will try CPAP mode at 12 with EPR at 2 and we will see what we get. And you are right, my pressure rarely changes much at all regardless of all the pretty red exclamation marks (Resmed apenas) and the pretty blue lines (Resmed hypopneas).

I just wanted to get these two current UPPP threads linked:
viewtopic/t41392/Had-UPPP-Do-I-Have-To- ... ml#p363515

As those threads unfold, comments in one thread may be relevant to both UPPP threads. Look forward to hearing how Mar's experiment turned out.

robertmarilyn wrote: It would be nice if there were LES exercises we could do to help it get nice and tight and working right (a poem ).

But I agree: that would be nice!