Cpt. Krispy

Yeah, I think everyone kind of had their own tells and you learn yours on the way. I kind of ramp up then back down in how many I’m getting. I’ll start with one a night and work my way up to around six or seven, then cycle back down until I’m skipping days and then it just kinda doesn’t come again one day. But I think it can vary wildly by individual and by cycle too.

I feel like it helps when I take it without? Tbh whenever I redline into high cycle I just add it and don’t care about the runs. But the rest of the year I omit it. And I’m episodic so it’s kind of hard to tell if things help or if it’s just different this cycle. You never really know if the cycle ended because of something you were doing, or if it just ended. Or if maybe you missed a year because you were on to the cure, or if the beast just had other things to do that year somewhere else. It’s that whole correlation doesn’t equal causation thing. It makes it hard to track efficacy.

I’ve just omitted it in the past. It gives me the back door trots like nothing else. And disclaimer, I’m not a doctor, heck I don’t even play one on tv. My two cents though is that something is better than nothing, and if I were in cycle (actually I am) then I might just take what I can tolerate and see if it helps. I’m a fan of citizen science. But I also do dumb things sometimes, so YMMV to be honest.

Heck, I’m game for anything. Sign me up if this ever gains any traction.

Yeah, I’m episodic and mine always start off sort of low key. They usually ramp up in frequency and amplitude until I’m going full tilt, 4-6 hits a night at peak. Although I’m not as clockwork regular as some. I’ve even had a few low level hits and then not gone into cycle. Like a miss or something. But usually when I start feeling pain on my right side, I get my stuff ready to rock. Better safe than sorry. I got caught out of oxygen once when a cycle started going, thinking maybe I’d miss, and I paid the Piper. One time of that was enough, I’m not doing a repeat of that debacle. So I concur with the seasoned veterans above. Time to get your stuff sorted. Better safe than sorry, and all that.

What’s a kinetic type personality?

I second the idea of keeping notes. I think at this point most of us have a routine. Half full of crazy strangeness and the other half honest citizen science. Whatever works for you works for you. My go to is the o2. After that I’ve tried most stuff. Some works, some doesn’t, but that seems mostly individual. I’ve yet to hear of oxygen not working for someone. Not to beat a dead horse, but I’ve gladly paid for oxygen out of pocket. My insurance doesn’t cover it. But it’s super worth it in my book.

The injections always freaked me out too, when I wasn’t in the midst of an attack. When the pain was on me though it got really easy to stab myself. Real easy.

Hey Jara, maybe it’s me, but 30 minutes still seems like a long time. Have you ever tried o2? Stuff saved my life, literally. I just got back after being in remission and pf for a few years, but I never ever got rid of my two oxygen tanks. I can usually abort in 15 minutes tops, and when I start the o2 it stops the pain right where it’s at. It might hang for a bit before it dies but it doesn’t get bigger once the oxygen mask goes on. Anyways maybe look into it. I tried sumatriptan for a while. Pills, then the nasal inhaler, finally the injector. I had crazy side effects like skin peeling and a tight chest. Oxygen for the win in my book.