Day 3 post infusion, 2 wicked day time attacks 1 wicked evening attack and 2-3 alarm clock attacks (wicked but I aborted w oxygen fairly easily). I’m saving my O2 for alarm clock attacks or kipp 10s I can’t tough out.
it’s taking it’s toll on my family, despite my warning I was going to be up the creek the were “optimists “ that a new doc down here would have some magical answer/ treatment. I’m trying to let go of my anger about it all but it’s hard when I’m getting clobbered Day 3 was better than before I started all K tx a year ago but still has me questioning wanting to live like this. !!!not in the suicidal sense but in the if I died of natural causes sense it wouldn’t be so bad. My QOL sucks and unless I am able to find a doc to help me w home use K I’m up the river... time to call north FL docs Monday. Found a few pain docs at Uf that treat CH and some other headache pain docs as well. After I exhaust these options I’ll call the few remaining compounding pharmacy’s I haven’t called yet in N FL to see if they have a referral. After that my plan is to move back some how and see my old doc. Or a new one that works w K if some one here has a recommendation.