One year and frustrated with no change on CPAP

Hi, I'm wondering if there is anyone out there who may have had a similar experience or words of wisdom for me. I've been using CPAP for about a year, for 3 months on BiPAP (it didn't seem to relieve any of my symptoms), then I used just an oral appliance (it also did not relieve my symptoms), then I used both the oral appliance and a new setting on the machine (Auto BiPap - I tinkered some with the pressure setting on the advice of cpaptalk users) for about 5 or 6 more months, all with oversight from my doctor, all to no avail. I sleep 8-9 hours, am tired, my eyes ache and I have mild nasal congestion every single day. I've been tested for allergies, had mild nasal surgery, tried multiple settings on my machine and then when I went back to my doctor a month ago for my 3rd sleep study she recommended I get tested for a systemic problem (like Lyme's disease) and set my machine back to what I had it at day one of using my machine. She basically gave up on me!

So I went to a new sleep doctor who had me tested yesterday to try ASV. He thinks my AHI (last month I averaged 5) is just too high so they haven't found the right setting yet, but when I did the sleep study I found ASV is even more annoying than BiPAP (which I generally found intolerable - I would sit up awake for literally 4 hours straight at night exhausted but trying to meet the insurance requirements and just about never fell asleep with CPAP. It wasn't until I used nasal pillows and Auto Bipap that I could even sleep). So now it looks like BiPAP and ASV are intolerable for me (does anyone else burp like crazy on these things?) and Auto BiPAP, at a range of settings, is ineffective at reducing my apneas.

I am getting the sense that CPAP machines are simply ineffective for certain kinds of people and certain body types. Are there other possibilities? Is there any hope? I feel so frustrated with my doctors and this ineffective treatment!!!

What settings are you using?

Do you have Sleepyhead software (free) and can you post a few results?

First the broad perspective...

We are all going to die... eventually. The goal is to have a high quality of life on our journey.

Various things assault our quality of life. Sleep disordered breathing is one of those things. There are many others.

IF you pay attention to your data and tweak the xPAP settings to get your sleep apnea under control and you still feel like crap, perhaps it is time to look to other causes, whatever they may be.

You can take satisfaction in knowing that you have eliminated ONE THING that can cause problems. If you are not waking up fully rested, you may have to look at some other things that are going on in your life that could possibly contribute to robbing you of fully restful sleep.

The journey continues...

Here's a previous series of posts that shows my settings and the suggestions I've heard and tried. I'm still having the same problems as back then with the same results.

As Julie said, we really need to see data. Download Sleepyhead. Your sleep data is on the SD card. Then you can look at every breath. If the mask is leaking or you have mouth leaking, then your therapy is defeated. Post the pictures.

Don't feel alone. I have been on Bipap 1 1/2 year and am still very tired most days. My AHI is great. I can sleep with it all night. Never know how I will feel next day. Some days I do feel good and others still very tired. I also have restless leg and they increased my meds for that. I just took home oxygen test because my sleepy head showed even though my Ahi is good I still have a lot of hypopnias. Waiting for results.
Hope you get some answers.

Sleepyv

Guest wrote:Here's a previous series of posts that shows my settings and the suggestions I've heard and tried. I'm still having the same problems as back then with the same results.

Sorry! The link: viewtopic/t154755/viewtopic.php?f=1&t=1 ... 0#p1128910

Corban76 wrote:

Guest wrote:Here's a previous series of posts that shows my settings and the suggestions I've heard and tried. I'm still having the same problems as back then with the same results.

Sorry! The link: viewtopic/t154755/viewtopic.php?f=1&t=1 ... 0#p1128910

and, did you ever follow through with the suggestions?

Yes, I've tried the suggestions and tinkered more. At my third sleep study last month they said they used the latest settings I had my machine at and they told me they had zero apneas during the study (although my sleepyhead data never shows me below 5). I'm curious as to whether that was a one time thing (being at zero), if sleepyhead data is inaccurate or if the set-up is that different between home and the sleep study. I also wonder if the other suggestions are right, that the machine is doing its job and sleep apnea is not the real culprit with my current issues.