New and with questions

Hi, new CPAP user and short-term lurker here emerging from the shadows. A little about me:

I have suffered from headaches off and on for about 17 years. For the past 2.5 years, I've been having nighttime headaches that wake me up and were seriously interfering with my life; I was also told I was snoring. I had a home sleep study back in April which showed with AHI at 12.7 and oxygen desaturation nadir of 77% (1% of the time I was below 90%). I was put on CPAP therapy and adapted to it pretty quickly. I started feeling the benefits right away. For the first 4 weeks, my nighttime headaches went away completely. Not a single one! I was positively giddy with the success of it. I had a spike in daytime headaches that worried me a little, but I hoped that would go away with time. I had the Dreamwear mask and loved it.

Then, around week 5 I started having problems with mouth leak/dryness. Tried chin straps, tape, fussing with humidity settings and tube temp, etc. nothing worked. Nighttime headaches started creeping back. I switched to a full-face mask (Amara View) hoping that would solve the problem, but it is just getting worse and now I am back to headaches every night while still using the equipment faithfully. I'm almost at the point where I feel worse than I did pre-therapy. My "events" are still not controlled in spite of compliance using the equipment.

Saw the sleep medicine doc last week and he didn't have anything to offer. He has ordered an in-lab sleep study scheduled for next month as he says we need more data. I am otherwise in excellent health, normal weight, no cardiac issues. I'm not ready to give up but I am feeling discouraged and desperate. My mother died following a massive stroke and I worry that these constant headaches will predispose me to the same fate. I wonder if anyone has had a similar experience and overcame it to find good health and good sleep. Tips are welcome!

Following is a summary of my stats. I downloaded Sleepyhead but ran into a snag getting it synced to my machine so the following non-baseline numbers are from the CPAP machine itself and just cover the last 30 days if I'm interpreting it correctly.

Equipment:
Airsense 10 Autoset with humidifier
Climateline heated tubing
Started with Dreamwear mask, now have Amara View

Baseline stats from home sleep study:
AHI of 12.7 per hour, OAI of 9.4 and CAI of 0.6
Oxygen desaturation index was 8.9 with nadir of 77%.

Current stats from machine (summary):
Pressure settings: started at 4-16, now at 9-13
Avg. pressure 10.8
Leak: 7L/min.
AHI = 7.4
total AI = 7.1
Central = 5.6
Only medication I am on is synthroid at 25 mcg daily.

Do you have SleepyHead software? If not, get it.
https://sleep.tnet.com/equipment

What settings are you using on your machine? Don't know how to figure them out...check out the manual.
https://sleep.tnet.com/home/files/resme ... -guide.pdf

Are you using EPR? If so at what setting?

Esme L. wrote:Current stats from machine (summary):
Pressure settings: started at 4-16, now at 9-13
Avg. pressure 10.8
Leak: 7L/min.
AHI = 7.4
total AI = 7.1
Central = 5.6

.

What was the AHI back when the minimum was 4 ish? The software will show old results easily.
When were the settings changed from the 4 to 16 to the now 9 to 13?
You are in auto (apap) mode it appears.

The central index is elevated ...was this above last nights results or an overall long term average?
Have you always had a higher central index? Per your sleep study without cpap centrals weren't very numerous but now they are....

My first thought is to try altering EPR if you are using it.
Second thought is to look at the detailed software reports.

Oh...are you spending much time awake with the mask and machine on during the night or are you sleeping soundly for the most part?

Pugsy, thank you for the quick response. Here are my settings, let me know if I've missed one:

Ramp time: off
Humidity: 5
Pressure relief: on
SmartStart: off
Mode: auto set
Pressure Max: 13
Pressure Min: 9
Mask: full face
Response: soft
Ramp time: off
EPR: on
EPR type: full time
EPR level: 3

Regarding the pressure, I wasn't at 4 for very long; found it difficult to breathe and even 5 and 6 weren't optimum for me. I've been at 7 for a couple of weeks and just last night bumped it up to 9 out of desperation to try anything. I do know one thing: my AHI has never been consistently below 5, even during the honeymoon period when I was getting no headaches. My sleep doc just last week bumped the upper limit from 16 down to 13. I am at 10.8 or so very consistently once I drop off.

I sleep pretty soundly. Actually, I did before therapy as well, or at least thought I did. It's the headaches that disrupt my sleep. Sometimes I'm able to fall right back to sleep and other times (much less often) I'm awake for hours.

I'm still learning about my machine and I've not figured out how to view discrete historical data, such as my stats when I was at pressure of 4, with just the machine and ResMed app. The machine shows - as far as I can tell - a summary of the last 30 days, or 60 days or whatever. For the past 60 days, AHI was 7.4, Total AI 7.0 and central 5.0. I've been on the therapy for 66 days. I am likely missing something very obvious!

I downloaded Sleepyhead, but got stuck at the point where it wants to know the directory of the SD card. I'm not the sharpest tool in the shed when it comes to computers, but it seems like this should be easier...not giving up yet.

Esme L. wrote:got stuck at the point where it wants to know the directory of the SD card.

It just wants to know where to look for the SD card.

See this and see if it helps explain that part of it. I don't know where RobySue mentions this part but I am sure she does.
http://www.apneaboard.com/wiki/index.ph ... SleepyHead

It depends on your computer and how many extra drives you have.
On my Windows laptop here it is F drive. On my other laptop it was E drive.
Don't go into the SD card though...just point it to the drive where the SD card sits.

Your central count and your headaches are troublesome to me. Now while we both know sleep apnea headaches aren't the only sort of headaches out there...they do happen and we want to eliminate those. I also get some headaches from my poor old neck but I have learned that they usually come from sleeping position or a bed pillow change.

You might ask your DME if they would get the doctor to order an overnight pulse oximetry test to see what your oxygen levels are doing during the night.
You could also buy an overnight recording pulse oximeter if you just wanted to check your own...you can get a good one for $50 to $100 depending on how fancy you want to go.
At least rule in or out oxygen levels contributing to the headaches.

Finally got Sleepyhead to work! I'm so embarrassed about what I was doing wrong that I won't admit it publicly Anyway, it works now, I have all my data and onward to figure out what all these graphs mean and how do I post them? I'm not sure if I can post since I'm still awaiting admin approval of my registration.

Headache is definitely a symptom of CSA, and I read on the Mayo Clinic website that CPAP therapy for OSA can occasionally lead to CSA. Sometimes it resolves spontaneously, and if not there are apparently other types of machines that can be used. I am so tired of having pills thrown at me that I will try pretty much anything that isn't pharmaceutical. I'm hoping to learn more at my in-lab sleep study in a few weeks.

Headaches are standard with obstructive events too... but unless your pressure settings are very high, it's unlikely you need to worry too much about centrals, tho' looking at SH will let us know more. You can just leave a link in this thread to the Imgur.com graphs and we'll be able to access them.

Yes, higher pressures can cause central apneas to pop up that weren't there prior to the addition of cpap therapy but they can also happen with very low pressures. I have seen it happen with as little as 6 cm therapy.
It's not something that only happens with "high" pressures....for some people it is any pressure.
There's even a very small percentage of people who will have centrals pop up because of bilevel pressures and it's why I asked you if you used EPR...EPR creates a bilevel situation and sometimes turning EPR off or at least reducing it will reduce the centrals to a non worrisome number.

Not long ago I worked with a woman who had 15 centrals per hour with bilevel pressure settings 4 cm apart..what we call pressure support.
We reduced the pressure support to 3 and the centrals went away.
EPR is a form of pressure support...first thing I would do if it were me is turn it off and see what happens to the centrals.
It's considered a comfort feature anyway.
I don't know that it will reduce to centrals you are seeing or not because at this point we don't even know when they are happening or even if you are asleep or awake when they are happening....but it hurts nothing to try it now without knowing all that.

How to post screen shots of your daily reports. And while it can be done not being registered and logged in...it's easier once you get officially registered and logged in here at the forum because you can't post links right now.
https://sleep.tnet.com/reference/tips/imgur

and some examples
viewtopic/t103468/Need-help-with-screen-shots.html