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This made me think of all the goofball things I do when being hit lol. Walk circles in the garrage, swing hands rotating them at the wrist like im strumming a guitar, talk to it like "it" has a conscious "for f@c#'! Sake can you just stop... Of course none of this works but it does give the illusion to anyone within sight that I'm bat shit crazy and most likely not a good idea to approach.. oh and gives me a little cardio and DISTRACTION. I never have learned how to sit still through it, I suppose I have yet to find my inner zen of calm @Titan32 I'm happy you got so much feedback on here and from some really great pain experienced/CH knowledgeable people and hope to hear some positive progress feedback from you soon. Take care!

.... a cool example of i betcha a game everyone of us have played in some form or fashion. am convinced that we resort to such because it also provides a distraction....something ELSE to do/think about....whether it saves anything or not. ...same here on the regulator/turn off the valve....fiddling with a regulator whilst being hit is beyond my patience/capabilities....

Thank you! Eating smaller meals and drinking more water seems to be helping her, but I will pass along this information, because everything helps. Because we often have people here whose symptoms look like a form of hemicrania, I wonder if you would say a little more about your situation. Here are my questions, but of course you don't have to answer all (or any) of them. I really hope you are on track for something good to happen, because I know it's been very rough for you. You mention that you have been taking the Indo for the last couple of months, and it sounds like you still are not sure whether it's PH that you have. Did you start out on a low dosage and then increase it based on your tolerance? What is your current dosage? How has it affected your attacks? What will tell you whether or not it's PH that you have? As I recall, oxygen was somewhat effective for you. I don't remember about triptans. Do your doctors have a diagnostic basis for thinking it's a hemicrania, or is it just that you haven't responded well to all of the conventional CH treatments and they are trying something different? In addition to taking the Indo with meals (which I imagine is partly a way to protect your stomach from the harshness of Indo), are you also taking something else to protect your stomach? Have your doctors discussed any of the other things, aside from Indo, that sometimes help with hemicrania, or have you looked into them? One is boswellia serrata, and there is a discussion of others here: https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf One person has said that busting every five days kept her HC under control, and I think the vitamin D3 regimen is supposed to help (but I feel like you tried that). Thank you for anything you choose to share!

What are the moments your daughter is taking the medicines, and does she have regular bowel movements? The reason for me asking is that the last couple of months I am taking Indometacin to see if I have the rare paroxysmale hemicrania, and I tend to see a similarity between the moments I take my medicines, whether or not I can poo and my CH attacks. What I’ve learned so far is that I have to use Indometacin after lunch and after dinner, If I take them before or during, my logbook indicate I have more attacks. Also the intake moment is important, 13:00 and 19:00 sharp, where if I have not had dinner before 19:00, I skip dinner because I must have had my dinner before I take the Indo. A side effect of Indometacin is an adverse effect on my bowel movements, I can not defecate for days. I have the strong feeling that the longer the poo stays inside of me, the longer the possibility exists the waste products can swarm within my intestines/body. In turn this may elevate histamine where the D3 might not be able to fully counterattack. My situation is not the same as your daughter’s, but maybe she can take a closer look at the moments she takes the medicines and her bowel movements to see if there is a time relation between eating, pooing and attacks. All the best