CPAP works but no relief of symptoms

[JissaP]

Hello everyone!

I've been having several symptoms for the past 4 years (feeling exhausted all the time, major brain fog, memory problems, daytime drowsiness, headaches, poor concentration, acid reflux, etc.), and I've done a million tests to rule out everything under the sun, until I finally went for a sleep study at Stanford.

Here are my results:

AHI : 8.7 (all hypopneas)
Oxygen Desaturation Index : 0.5
Minimum Oxygen Saturation : 93%
Presence of snoring: Yes
PLM Index : 0.0
Total Sleep Time : 357 min
Sleep Efficiency : 76.4%

Here's the full study: https://www.scribd.com/doc/262662197/im ... ATkS6hXl0G

My sleep doctor diagnosed me with mild OSA and prescribed a CPAP machine.

I've been using a ResMed AirSense 10 Auto Set for Her with a Philips Respironics Nuance nasal pillow mask and a ClimateLine air heated tube at a pressure of 7-9 (after adjusting it over time with the help of my doctor).

Now here's my problem: I'm using the CPAP machine on average 6-7 hours a night, with barely any leaks, no problem to sleep with it (although sometimes I get condensation water up my nose and remove it, but maybe once a week now), my pressure is always around 8 (so not at max), my AHI is never above 1... and yet I see very little difference in my symptoms. So basically, I've been using the CPAP machine perfectly with "technically" amazing results for the past 4-5 months, but it's not making me feel better.

My sleep doctor wants to move on to prescription medication (Modafinil) to treat the symptoms, which basically means we'd be giving up on the whole sleep disturbances theory and just moving on to "no idea what you have, but we'll treat the symptoms and hope for the best". Obviously I'm not too fond of that idea. I'm extremely worried that my cognitive problems will keep declining and we'll just be masking the problems and letting it get worse.

I wanted to know if you guys have any idea what I could try next, or if any of you ran into the same problem before? I wanted to try increasing the pressure, but it seems like anything above 10 and I can't deal. I start swallowing air and having horrible cramps, and I keep waking up every fifteen minutes with the inside of my nose on fire or something.

One thing that I'm wondering is that I might have UARS, but I can't really find evidence of that in my sleep study. I'm not sure where my EEG arousals count is supposed to be, but I don't see it on my sleep study results... I know they didn't use the pressure thingy down my throat, but wouldn't my doctor be able to see at least a few clues for UARS if there were indeed some? I'm female, 30 years old, 5'3 and 114 lb. My nose is very narrow, I've always had problems with my mouth being small, my hard palate is narrow and high (I've had two palate expander devices, one at 10 years old and one at 24 years old, yet the doctors keep mentioning how narrow it still is, so I don't know), I have a long face syndrome with a pretty substantial gummy smile, so I'm wondering if these are causing UARS.

Is there anything else I can do if I do indeed have UARS? What about MMA surgery? Is it even worth it for such a mild case of OSA or for an (apparently) very subtle case of UARS?

I'm desperate for relief

[Julie]

Do you mostly sleep on your back? That's not meant to be flippant - and could be important.

[kteague]

I'll leave the UARS discussion to those who know what they're talking about. I'd like to ask what kinds of things have already been tested and ruled out as possible contributors to your symptoms? Sometimes more than one thing has to be addressed. The first few things that cross my mind are anemia, thyroid dysfunction, diabetes, and deficiencies such as Vitamin D and B vitamins. If you suspect something about your sleep may still be a culprit, they need to see how you sleep when on CPAP. The most revealing test for you would be a repeat sleep study while using CPAP the entire night at your known therapeutic pressure. That is the best way to know what's going on with you now. I'm with you on not stopping looking for answers. Too much left unresolved. If you need the meds to function while continuing to search for answers, so be it, but the med is not THE answer. One time my doctor gave me another negative test result in a dismissive tone, as if he were saying 'well that's the end of that'. I told him it doesn't matter what I don't have, keep testing until you can tell me what I do have. You may have to push to get the answers you need. Good luck going forward.

[Pugsy]

Which mode of operation are you using?
By chance the "for Her" apap mode or the other apap mode?

[JissaP]

@Julie: I always fall asleep on my side, but I sleep half the night on my back, half on my side according to the study. But I did try the tennis ball sown into the back of a pajamas thing for about a month before we did the sleep study (along with nasal strips and light therapy), and nothing changed.

@kteague: I already have a thyroid problem (grave's disease) so the first thing I did 4 years ago was to go see my endocrinologist, and I pushed really hard for every little thing related to it that could be the culprit (even adding T3), but sadly everything is perfectly OK and nothing changed with the new med. No anemia, no diabetes, vitamin D has been stable for a long time now (taking supplement every single day), vitamin B perfectly fine, adrenals A-OK, heart is good, no gynecological problems that could cause fatigue... nothing! The sleep study is the only thing that came back abnormal! I mean, I'm very grateful and happy to be healthy, but the constant fatigue and sleepiness is messing up my life. So frustrating! I will see with my doctor if we could do a repeat study with the CPAP. Thank you for the suggestion!

@Pugsy: I am using "Autoset For Her". Should I try another one? There are two other options: "Autoset" and "CPAP".

[Pugsy]

The "For Her" apap mode is a little different...supposed to be a little gentler and targeted towards women's breathing breathing better. I don't know that the other modes would help or not but something to consider at some point if things don't improve.

Can you post an image of a typical night's daily detailed report from SleepyHead software?
This thread shows examples of what we like to see in Sleepyhead and also has a link that explains how to post the images.
Normally I wouldn't ask for the flow limitation graph but in your case I think it would be useful to see it.
So events, flow rate, pressure, leaks and flow limitations and of course the statistics and AHI stuff on the left side of SH report.

Do you ever get more than 7 hours of sleep? If so, do you feel any different with more sleep?
Also...do you wake often during the night?

Oh...can you show the overview graph of usage hours so we can see the overall usage pattern?

[Wulfman...]

If you're open to suggestions, mine would be to try straight pressure for awhile and see if maybe the pressure changes were disturbing your sleep.


Den

.

[JissaP]

@Pugsy First of all, thank you so much for making me discover SleepyHead! That program is amazing, and thank you to everyone who worked on it! I didn't think it was possible to access so much information from our CPAP machines!

Now on to the results, here are screen shots of the stats and last night's results:

http://imgur.com/6wyJpqm
(Last week's compliance was terrible, mostly because I felt discouraged by what my doctor said, so I didn't use it every day.)

http://imgur.com/kIVdJgm
http://imgur.com/SnJRqzN
http://imgur.com/Qvg0rQm

I feel embarrassed to even show you this. Everything looks so perfect, and here I am, complaining on a board full of people struggling with their CPAP. After seeing this, I'm starting to believe that my doctor is right and I don't really have a sleeping problem! I'm kind of confused

[JissaP]

Oh I forgot to answer your question regarding how much sleep I get: I use the CPAP for around 6-7 hours and take it off when I wake up because my nasal passage is usually kind of dry and irritated, and then I go back to sleep for another 2-3 hours. So I always sleep at least 8-9 hours a night. I wake up a few times during the night, maybe 4-5 times, but it varies a lot from night to night.

Sleeping less or more does not change how I feel, and going to sleep earlier and waking up earlier also doesn't change much (I've tried it for 2-3 months before I got the CPAP).

[chunkyfrog]

There is no harm continuing with the cpap while your doctor rules out other stuff.
Some folks take longer for therapy to make a noticeable impact.
It sneaked up on me, after about 4 months, when I suddenly realized I had RUN 2 blocks without getting winded.

[palerider]

If you're open to suggestions, mine would be to try straight pressure for awhile and see if maybe the pressure changes were disturbing your sleep.

what pressure changes? she's sitting at 8.8-9 all night long...

you don't even wait for a chart before suggesting people ditch auto.

[palerider]

@Pugsy First of all, thank you so much for making me discover SleepyHead! That program is amazing, and thank you to everyone who worked on it! I didn't think it was possible to access so much information from our CPAP machines!)

Jissa, if you could remove either the mask pressure, or pressure trace, you could get the flow limitations chart on the one page with the rest of the stuff, and that's the only page you'd need to post.

if it were me, I'd raise your minimum pressure to 8, and your max pressure to 10, and see if the flow limitations would settle down.

flow limitations mean you're having trouble inhaling, so you're working harder to take a breath, and that interferes with some peoples sleep.

also, watch this: https://www.youtube.com/watch?v=-gie2dhqP2c

[BlackSpinner]

take it off when I wake up because my nasal passage is usually kind of dry and irritated, and then I go back to sleep for another 2-3 hours. So I always sleep at least 8-9 hours a night. I wake up a few times during the night, maybe 4-5 times, but it varies a lot from night to night.

There could be part of your problem.

Never never sleep without your cpap. You are spending 2-3 hours a night having apneas and probably low O2 levels. You could be undoing all the good cpap does.

If your nose feels dry and irritated adjust your humidity setting.

[Pugsy]

You've been changing things all over the place. Need to pick something and stick with it for probably at least a week.
If you do have UARS component the AHI is a useless guideline for you because it wasn't all that horrible to start with.

Current settings appear to be Apap for her mode with 7 min and 9 max (which you hit a lot) with EPR of 1.
Your flow limitation graph is a little more active than I would want to see if I were in your shoes. Now I don't know that the flow limitations are part of the problem with how you feel or not but it's possible.

Den is a big proponent of CPAP mode and there's some merit to what he says especially if UARS is a potential factor because from what I have read UARS people seem to be more highly sensitive to the least little thing.
Since you have been using the for Her mode...I really wouldn't want to change you out of that mode but there is a way to have that mode mimic how cpap works and not change things much.
Just set the minimum to equal maximum and it delivers a single pressure.
But to be honest you are already using such a tiny range and the pressure really doesn't move around all that much once you get past the ramp that you are almost using a single pressure as it is now. I don't see a fixed pressure being of all that much benefit but wouldn't hurt to try it at some point but I wouldn't change to cpap mode...in your case.

From what I have read it seems like UARS people often need more pressure, past what gives a good AHI because the AHI isn't going to be all that exiting anyway, to feel better.

I think the next experiment I would try if it were me...and it looks like you are willing to experiment...would be try your apap for her mode with minimum of 9 and max of 10 and let's see what happens.
Especially look at the Flow limitation graph.

For future images...you don't need all those graphs.
Turn off the AHI and mask pressure graphs (preferences/graphs) and include only these graphs on the right
Events
Flow rate
Pressure
Leak
Flow limitation

if you do just these you can resize them so they are more easily seen. No need to do so many screen shots of tiny graphs that we don't need anyway.

[yaconsult]

@JissaP: Yes, sleephead is wonderful - that's why we all recommend it so much!

When you want to post images, please use the Img tag above the text box rather than the URL tag as you did above. This will cause the graphs to appear right within your post without people having to click on a link to go to another site in another tab or window. The images are downloaded directly to the viewer's browser and don't take up any room on the cpaptalk.com server.