who only by moving can balance

The good news is that having e-mailed in a headache diary covering the year to date, I have an appointment with the CGRP clinic on Monday about restarting the anti-CGRP treatment.

But. Oof.

• the Lincoln Ostomy Output Consistency Scale (and, relatedly, the Bristol Stool Chart chocolate cake [nb FB link])
• a selection of Journal for Minimally Invasive Gynecology papers (feat. videos of the kind of surgery I'm likely to be having) (which I have not yet watched because logging in is Difficult) [ 1 | 2 ]
• the role of CGRP in hunger signalling (awake at 4 a.m.; had moment of INSIGHT or, well, potential insight)
• the part where heart rate is affected by CGRP, and varies over the course of the menstrual cycle, and unshockingly Does Things during migraine, and I have Fitbit-provided heart rate data since a few weeks before I started having regular migraine attacks, for the purpose of Writing Myself Up...
• thenatureofpaper (WHICH flowers do I want to buy myself. HOW long will I be inpatient. HOW many decorative things is it reasonable for me to take.)
• and, completely unrelatedly, British stick insect populations

Woke up this morning and thought, very clearly, "my head hurts".

In retrospect I should probably have medicated for migraine then, even though it was already too late, really, for triptans. Ah well; I took the prochlorperazine at least about ten minutes ago. (This being one that doesn't need to be taken before the migraine has Properly Set In in order to have any effect.)

On the upside: yesterday's inexplicable fatigue has been splicked.

1. Have received text message with delivery window for tomorrow's migraine meds acquisition process.
2. Relatedly: A accompanied me on a Stupid Little Walk this evening, in the rain and the (blessed) dark, and we have acquired both Trifle and Cheesecake. (Probably this time round it will be the Cheesecake, rather than the Trifle, of Positive Reinforcement. I am trying to not turn the misery trifle into an aversive stimulus.)
3. Two loaves of bread ready to be baked tomorrow morning (one for normal purposes, one specifically to make bread-and-butter-pudding for A's birthday this weekend).
4. Very expensive slippers, still. I am consistently capable of having actually warm feet (well, except when I am in bed, where slippers are Not Allowed, by myself, i.e. without a hot water Adam; whereupon I engage in mild contortions so as to wind up lying on my back with my legs crossed and my feet tucked into the crooks of my knees). I actually had to swap to Less Warm Slippers while trudging during my Duolingo this evening. (Current routine involves Less Warm Slippers first thing while I'm dragging myself through the shower and physio that works better with bare feet, then swapping to Warmer Slippers once I'm done with wanting to get them on and off repeatedly.)
5. I continue to accumulate evidence for my theory of endometrioma-induced chronic migraine. (This is a good thing insofar as treating myself as an experiment entertains me, and also Being Right provides The Illusion Of Control. Obviously the actual data collection isn't much fun.)
6. I have discovered that fruit bat Experiences are a thing.
7. I utterly failed to work my way through Bruce D. Perry's video/seminar series on developmental trauma + COVID-19 back when the relevant central list was still up on the main neurosequential model website, but it was archived and the videos are still live on YouTube, so I'm starting to work my way through those while Doing Mending now that I have actually read (and got on very well with) The Boy Who Was Raised As A Dog.

I am sort of fascinated that everywhere seems to say "we don't know why this happens" despite the fact that we also know that the place that anti-CGRPs are most likely to cause side effects is... the gastrointestinal system. Like??? surely "proposed CGRP signalling mechanism" ought to be at least being proposed?

-- ah, okay, turns out that if I poke academic literature rather than patient advocacy orgs, I start getting some mention of this. But only since around 2021, which I am mildly baffled by.

(I also need to actually hunt down more descriptions of What It Is Like and What The Hangover Is Like, because today I am much less photosensitive and the nausea's cleared off, too, but everything from the muscles on out in my general stomach Area is sore enough to be causing Difficulties. Did everything go into spasm and now I get the aftereffects of that? Did the Pain just make all of those nerves realise they could be constantly going AAAAAAAAAAH again? Is something else going on? I Have No Idea But I'm Bored. Default action of "throw painkillers at it" contraindicated by, you guessed it, migraine.)

Realisation while wrangling laundry, presented as a series of facts:

• I have both migraine and endometriosis
• migraine means that I am limited to 6 days (or 8 if I push it and am willing to stare down my migraine team) of painkillers (which includes paracetamol, NSAIDs and codeine, as well as triptans) per month
• a thing that Mostly works to head off incipient breakthrough migraines is The Frovatriptan Protocol, which consists of frovatriptan + mefenamic acid (an NSAID) + paracetamol (optionally) + (in my case) prochlorperazine (definitely)
  • each time I use The Frovatriptan Protocol I use up one (1) of my Six (6) Days Per Month
• migraine is. not. my only source of chronic pain.
• but I'd rather deal with endometriosis- and joint- etc etc etc-related pain than migraine fuckery, so I am currently significantly undermedicating my non-migraine pain
• BUT
• ON THE 14^TH OF SEPTEMBER, NICE APPROVED RIMEGEPANT FOR ACUTE USE
  • rimegepant, as the name suggests, is not a triptan -- it is a gepant
  • this is a class of drug that works on the same basis as the stabs I'm currently using and responding generally pretty well to -- it targets CGRP signalling/pathways/thingy
  • crucially, it has been conclusively demonstrated in clinical trials that this medication DOES NOT contribute to so-called medication overuse headache, so taking rimegepant does not count toward the six-day budget
• my next headache clinic appointment is on the 18^th of December
• which is more than 3 months after the NICE approval was issued
• so I will theoretically be able to switch from The Frovatriptan Protocol to rimegepant, thereby freeing up all my six-day painkiller budget for managing non-migraine pain

AT WHICH POINT I might even be happy cancelling my pain clinic referral? We'll see.

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Good things: roast dinner followed by Cartmel sticky toffee pudding. Put some fountain pen bits and pieces up for sale in one of the UK communities and they are steadily being spoken for (... though this does mean I need to actually finish packing the parcels and get them out the door). Comfortable clothes. Warm blankets.

Think, two things on their own and both at once--
Dearest, note how these two are alike--
Feelings are the language of your body--
-- Sit. Feast [up]on your life.

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Last night I went to bed late, in a way that involved walking across a dark field. This was the first time in, I think, over a year, that I'd been outside during the Actual Night -- we have very long evenings at the moment -- without sunglasses.

I could see the stars.

Galcazenumab loading dose is booked to be delivered on Tuesday next week.

Which is convenient! Because we're heading to Admin: the LRP on Wednesday!

Wish me luck, etc...