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[Treatment] I am more confused than ever....
#11
RE: I am more confused than ever....
(11-27-2019, 01:49 PM)JL3000 Wrote: Hi Everyone, 

I'm hoping someone may have some new insights or lines of thinking for me to run down. I have been suffering from fatigue for almost three years. Here is my timeline:

January 2016 - I first began experienced feeling fatigued. I had slept well my entire life up until this point. Oddly, my fatigue had an irregular pattern: I would wake up feeling exhausted one day, and feel fine the next. This pattern, in some irregular form, has persisted. 

July 2017 - After lots of bloodwork and a night in the sleep lab, my first sleep doctor (Dr. Cooper) told me that she did not think I had apnea. She informed me she suspected I had anxiety and should work with my PCP or a psychiatrist. Despite not feeling particularly anxious and not knowing what else to do, I followed her advice. 

August 2017 - I went to the Rheumatologist because my bloodwork revealed a very high rheumatoid factor. We ran down this avenue and found no other factors for inflammatory disease. 

September 2017 - I asked my PCP if I could try an SSRI. I ended up taking Celexa. For about two months, I felt mostly better, despite slight brain fog. By late November, my symptoms of fatigue had returned. 

December 2017 - I started going to a psychiatrist to understand if maybe I needed a different SSRI. My psychiatrist did not think I had any anxiety that would be causing the level of fatigue I was experiencing. 

February 2018 - I stopped taking Celexa because its efficacy ceased. 

March 2018 - I returned to Dr. Cooper to see if she had any other ideas. I got a CPAP that I used briefly with minimal instruction and even less success. 

May 2018 - I have a turbinate reduction and septoplasty. 

December 2018 - I visit another sleep doctor. Sleep Doctor #2 tells me I have 18/RERAs per hour. I am diagnosed with Upper Airway Resistance (UARS) and receive a CPAP. I feel better for about three months. My doctor doesn't understand my regression, and I ask for a referral to Oregon Health and Sciences University (OHSU)

May 2019 - ENTs at OHSU tell me I have a collapsed nasal valve and should have surgery.

August 2019 - I have a four-hour surgery on my nose and sinuses. I come home from surgery and sleep on a foam wedge pillow. For about a week following the surgery, I feel good. 

October 2019 - I meet with a PA at OHSU sleep medicine and have a titration study booked for January 2020

Currently - I am trying to refine my settings, so I nullify all events. From what I see on sleepyhead: I should be feeling great, but I'm not. Has anyone seen such madness before? Any insights? Leads?

THANK YOU!

I too, am dealing with feeling tired most of the time. I've had all the blood work done, took enough tests to last me a lifetime, and Sleep Apnea Therapy doesn't seem to be helping any. 

I feel more sleepy tired than I do physically tired. After I get up and out of bed for the day, within about 2-3 hours, I feel like taking a nap. I was diagnosed with AFIB about 18 months ago, but I'm supposedly doing fine and was successfully treated for it. 

I've been on CPAP now for over 14 months. Nothing has changed. I saw my sleep doctor about a week ago, and he said all looks fine. He checked my lungs and heart and said they sounded fine. 

I'm kind of thinking it's called "getting older". Now that I'm 65, I'm on Medicare. My sleep doc told me no taking off my mask after 4 or 5 hrs. of use, as Medicare doesn't like that when they are picking up the tab. I also now have to see him every 6 months, rather than one year. Again, Medicare's requirement. 

He didn't seem too concerned that I was disappointed with my CPAP therapy. He told me to keep at it. Hell, my wife gave me the same advice and she didn't charge me anything for it.

I'm still holding out hope that I'm just a late bloomer. I'm shooting for two years of being on SA therapy. If something doesn't change for the better after that, there won't be a lot of cards left on the table.
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#12
RE: I am more confused than ever....
Hello, welcome.

I also have UARS and your history sounds strangely similar to my own.  I just had septoplasty, RF turbinate reduction with outfracture, and nasal valve repair, about 2 weeks ago.  I am so far from having this all figured out, but it's a matter of continuing to try things until something eventually works.  What did the ENT say about the current state of your turbinates?  It is my understanding that if the cause of the turbinate swelling is not addressed (namely, allergy shots), that significant turbinate swelling is likely to occur 12-24 months following the initial reduction.

So, a couple of things.  Could you post your tidal volume, along with flow limitation graph?  Also, a close-up of breaths when the flow rate pattern is smooth (beginning of the night) and a close-up of breaths when the flow rate gets more variable, ie, around 0100?

Also, I see on your sidebar that you are using a nasal mask.  You appear to be having clustered large leaks, which I would guess is from opening your mouth.  Have you tried a full face mask?


I decided to purchase my own BiPAP a short time ago because I was getting very suboptimal results on my APAP.  Increasing Pressure Support above what is available via EPR on an APAP has made a big difference in having more nights that are refreshing.
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#13
RE: I am more confused than ever....
(11-27-2019, 08:45 PM)JL3000 Wrote: I am not doing well at this  Laugh-a-lot

You're almost there ;-)
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#14
RE: I am more confused than ever....
JL3000 basically wants to eliminate Clear Airway flags, based on his last chart, I'm in the same boat. wouldn't decreasing EPR be the next option for that?

does the pressure differential between exhalation, or a pressure that's too low during exhalation cause the Clear Airway flags?
I'm assuming that it has more to do with an exhalation pressure that's too low, otherwise there would be a spike in Clear Airway flags when one switches to BiPAP or other machine that provides greater pressure differentials.
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#15
RE: I am more confused than ever....
(11-28-2019, 11:54 AM)Bjjpapi Wrote: JL3000 basically wants to eliminate Clear Airway flags ...

No.

We're at the point where a) we know they've been diagnosed with UARS, and b) we need to see more data, in particular the FL graph.
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#16
RE: I am more confused than ever....
Here is the chart including FL. Are "clear airway" events central apneas?
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#17
RE: I am more confused than ever....
(11-28-2019, 12:03 PM)slowriter Wrote:
(11-28-2019, 11:54 AM)Bjjpapi Wrote: JL3000 basically wants to eliminate Clear Airway flags ...

No.

We're at the point where a) we know they've been diagnosed with UARS, and b) we need to see more data, in particular the FL graph.

AHHH... so in his case (with most other things already addressed), getting rid of flow limitations (via FL chart) takes priority. Makes sense... Oh-jeez 

Thanks slowriter
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#18
RE: I am more confused than ever....
(11-28-2019, 12:52 PM)JL3000 Wrote: Here is the chart including FL. Are "clear airway" events central apneas?

Perfect!

Now, I think bonjour suggested you change EPR to 3, and report the results.

We would expect that would cause the FL (both the activity of that graph, and the numbers on the left sidebar) to decline some as a result, which is what we're (at least partially) aiming for.

I, someone like you with UARS, have found I need to reduce FL as much as possible to sleep well, and in my case could only do that with a bilevel machine.

Do you need the ramp on?

Clear airways CAN be central apneas, but they aren't always. Sometimes the machine will report false positives.
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#19
RE: I am more confused than ever....
(11-27-2019, 01:49 PM)JL3000 Wrote: October 2019 - I meet with a PA at OHSU sleep medicine and have a titration study booked for January 2020

One other thing, which relates to the last thing I said about my own case:

When I pressed for a titration study, I emphasized two things, to both the doctor, and the tech that did the study:
  1. Eliminate all RERA's
  2. assess the efficacy of bilevel for achieving #1
What we're suggesting you do now (as with bonjour's suggestion) will give you information that may help with that process, and also hopefully help you sleep a little better in the interim.
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#20
RE: I am more confused than ever....
It's confusing, because there are two graphs with the word "flow" in them. The additional graph you want to fit in says "flow limit." Do you see it further down somewhere? Just grab it and move it up. Then try scrunching the graphs a little by grabbing the gray horizontal bar that separates them. You want to wind up with these graphs in one screen shot:

Events
Flow rate
Pressure
Leaks
Flow limit.
Snores.
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