[Symptoms] Persistent headaches, nothing seems to fix

[haikuclue]

Hello all. I’m reaching out to see if anyone can spot something obvious in my data and help me get over what has been an extremely frustrating year with my machine. 

I am going to resist the urge to write long, poetic paragraphs here and kind of cut to the chase, because, I think, the frustration with this gets me a little of track. So does the lack of quality sleep :/ 

Main issue: I have been having very regular, very life affecting headaches after using my Resmed Airsense 11 machine. 

These headaches are behind my temples and eyes. They are not resolved with any painkillers (I have tried them all). 

One thing I find very interesting that IMO could be the key to figuring this out, so highlighting this:  
The headaches do not start as soon as I wake up, but rather develop as the day goes on. I *can* tell if it is going to happen when I wake up. The pain and severe brain fog lasts all through the day into the evening. Usually it resolves by time it is time to go to sleep again, but sometimes does not. 

The first round of headaches started in April of 2023. They lasted about a month and mysteriously resolved. The next round started in October 2023 and didn’t resolve. 

I have done a lot of things to try and fix this issue. Unless noted otherwise, I experienced these headaches regardless of the settings/changes made:
• I stopped using my machine for the past two+ weeks and do NOT have these headaches. 
Unfortunately, I do have a pretty classic apnea syndrome where I constantly am waking to my own snores/breathing stopping, and I forgot how maddening that is. I did have a nice two weeks without that happening much, but it seems my no machine sleep is back to being very problematic

• I have adjusted my pressures and titration, moving away from APAP, trying pressures as low as 6 (which makes me feel I can’t breathe) and as high as 12, which makes me feel my head will explode and fart a LOT

• Adjusted my humidity settings up and down and even off

• tried different masks: nasal pillows, both kinds, the insert and the ones that hug the nose, full face mask, nasal only mask. I had success for a few nights with each, frankly, but I have experienced these headaches with all of these masks. 

• Adjusted my EPR settings up and down and even off

• Adjusted mask tightness

• Adjusted sleeping hours

• Adjusted alcohol intake 

• Adjusted pillows, position (avoiding back sleeping as much as possible, in my case) 

• Used mouthguard

• Used tape for leaking

• Had an eye exam, tried different diet, magnesium, etc... however, again, I do not get these headaches in the two weeks since I've stopped using machine.

• nasal sprays and nasal rinses before bed. (no steroids)

I can’t emphasize enough how much this has literally been making my actual life not that great. I. wonder if anyone here has insights that could be helpful, I’m pretty desperate. 

I made some screenshots, I think they are in the Apnea Board format, I hope so. I wanted to show close ups, and so there are three images on each attachment, all from same night, and three different nights/attachments. 

I am sharing three different nights with fairly diverse settings and (for what it’s worth) AHI results. There are three images for each night,  one overview and 2 close ups. Each of these nights are nights preceding a pretty bad headache.

Thanks all very much in advance, I hope you are well! And if you are struggling with this too, I am very sorry.  Hopefully this post leads to some solutions for you too.

[Luka07]

Have you checked your nose and sinuses?
Maybe headaches are coming from there.. Maybe you can try some nasal spray like Nasonex or Dymista or even antihistamine for allergy so you can rule that out?
Also you can visit ENT doctor.

[haikuclue]

Ahh thanks, I knew I was forgetting things I've tried

I have tried nasal rinses and saline sprays as part of process. Was one of the latter things I changed and had good results until I didn't. I have not done the medicated ones yet. I have intermittently also used Benadryl.

With all responses here, when I say "I've tried nasal rinses" it means "I've tried nasal rinses and still had headaches"

I should try the steroidal I suppose. I just wonder why I wouldn't also need those sprays when not on machine to prevent headaches. 

Thanks so much, great thought!

[Jay51]

I used to get minor headaches when I used a nasal pillows mask with medium to high pressures.  When I switched to a full face mask, no more headaches.  I have no idea why this occurred.  I was diagnosed with allergic rhinitis (but have no problem with it anymore), and I have had a septoplasty and turbinate reduction surgery.  It seemed like the flow of air concentrated 100% directly into my nostrils caused it (only at medium and higher pressures).  At lower pressures no problems though.  The full face mask spread out the pressure so it would be easier for me to tolerate.  

I am not even suggesting that you try a different style of mask, I am just writing what worked for me personally.  YMMV.  

I do hope that you find a solution to your problem of much more severe headaches than I got from pap/ventilator + pillows mask.  I have not tried nasal cradle only mask though.

[haikuclue]

thank you yup, I did try a full face mask, was very hopeful, as I do believe that the issue is the direction/concentration of the pressure on my sinuses. It is a bit of a mystery, and sadly the full face mask didn't fix it :/

[Jay51]

Sorry to hear the FFM did not work for you.  I remember a post I read here either last year or the year before.  I am so sorry I can't remember the name of the thread or find it searching.  But I remember the gist of it.  The person had some anomaly in his sinus cavities that caused headaches using pap.  I had a CT scan of my sinuses and ENT said they are all perfectly normal.  It is up to you how far you want to try to pursue finding an answer to this.  Your PCP might be able to help diagnose what is going on (possibly get a CT scan of your sinuses, etc.).

[dpoelker]

Excedrin Migraine helps with my occasional headaches and brainfog.

[haikuclue]

Sorry to hear the FFM did not work for you.  I remember a post I read here either last year or the year before.  I am so sorry I can't remember the name of the thread or find it searching.  But I remember the gist of it.  The person had some anomaly in his sinus cavities that caused headaches using pap.  I had a CT scan of my sinuses and ENT said they are all perfectly normal.  It is up to you how far you want to try to pursue finding an answer to this.  Your PCP might be able to help diagnose what is going on (possibly get a CT scan of your sinuses, etc.).

I think you might be on to something... it definitely feels like that could be the case somehow. 

I went down the terrify yourself by looking at WebMD rabbit hole and came across a few cases where people with head injuries can *very rarely* get air on the brain (which isn't good) on CPAP. I don't think that's it, but I did actually have two head injuries as a child (which, yes, my family does love to joke about) 

all that is to say: If people here don't see a pattern with especially and obvious oxygen/CO2 thing in my patterns, then I unfortunately need to hold off on using my machine until I can consult an ENT person. It's really too bad that my current health care options in California have like a many month wait time for even a simple check up but oh well!

[Jay51]

I actually had a few concussions a long time ago playing football.  But our scenarios are different in several ways.  The headaches I got were minor; and went away shortly after I got up.  But they were painful enough to force me back to using a FFM.  It seemed more like the concentrated air of the nasal pillows really irritated the lining of my nose and sinuses.  Very uncomfortable to me at higher pressures.  I may not have used any humidity back then either (so increasing humidity might be something to try if you have not already tried that).  But with a FFM and higher pressures, I have zero headaches anymore.  

I hope you can find out the cause of your migraine-like headaches.  Totally your choice as to how to proceed from here.

[staceyburke]

Many people have headaches when they are not getting enough air.  Your min is 8 I would try 9 for a night  maybe 10 IF you still have Headaches.  It won't hurt your therapy but you may start to get leaks from the higher pressure.