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Oxygen questions


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Pure, total gratitude and empathy for everyone here. If you are here, you are a legendary warrior for sure.

 Questions about O2. So my dx is atypical cluster and the rip-my-eyeball-out-and-nose-drool (gross, sorry, but that’s how it feels, as if my nose is drooling) phase punctuates a ceaseless shadow headache (unilateral, behind the eye) that is like a 7 on the pain scale. The shadow doesn’t ever let up, for days at a time, only giving way to horrendous waves of pain 9 or 10 or 11 (yep these go to 11) where if a had a claw hand, I’d rip my eyeball out. Sorry. getting to the question the slow way round…

O2 is incredible. But the benefit is so short for me. In 13-17 minutes using the breathing technique in the awesome video posted here, I feel real relief. The wave stops in its mean little tracks and the shadow drops to like a 3 or 4! Hallelujah! But it all comes right back in 20-40 minutes. Hey I’ll take it, it beats the alternative (no relief). I’ve tried energy drinks before the O2, and I’ve tried breathing out of the tank for an extra 10 minutes as some here have suggested, still only 20-40 minutes of freedom. Wondering, is this how it works for others? I’d say the relief is huge (yay!) but short (boo!) What’s it like for you?  Is this a function of that “atypical “ part I have or is this it? Is this how O2 works?

 Second question, sometimes I wonder if a have cluster or something cluster-adjacent. My dx is atypical cluster, but I’m so used to second guessing the doctors after half a lifetime of being told I had stress headaches / migraines.  Does my experience with 02 suggest one (ie cluster) over the other (ie cluster- adjacent like SUNCT)?

 Keep fighting  the good fight and thanks all.

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9 hours ago, CursedEyeball said:

sometimes I wonder if a have cluster or something cluster-adjacent.

My first thought reading the first paragraphs was hemicrania continua (HC).  https://my.clevelandclinic.org/health/diseases/21538-hemicrania-continua  It's a characteristic of HC, in contrast to CH, that oxygen doesn't work the way it does with CH (which I would say is true of what you are describing).  Also, triptans typically don't work, either.  But sometimes they work a little.

There are several types of hemicrania.  The good news, if you have a hemicrania, is that it is treatable with a medication, indomenthacin.  In fact, that is the diagnostic test for hemicrania -- whether indomethacin successfully treats it.

If you do have reason/opportunity to test Indo, be sure to look around the web for proper dosage.  There are a lot of recommendations about that.

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