Posts

Migraines + Autonomic crashing

The short and long of this is - Surprise. My migraines and my "CFS" ( dysautonomia at this point ) are quite probably linked. Same thing. Different outcomes. Who knew.   So. I've had killer migraines for decades at this point. Got my first one having moved to Norwich. Brutal. Over the years I have learned very costly lessons about what they can do to me and what can help - somewhat. Typically my migraines follow the same pattern -  build up phase - you can ignore this at your peril, will slowly get worse killer phase -      early - migraine headache develops, severe pain often above eye, urge to "drill a hole in your head" to relieve it.      early - mid - body spirals out of control, breaks out in severe "fever" sweats, nausea spikes      mid - fever sweats continue. hard cycle between vomit and intense headache. these two states shift between each other in minutes long bursts. quickly empty any stomach contents. still vo...

Jan 28

 Very bad today. It is 2pm give or take. I have come up for air. But I can't sustain being up here. I feel ill. And very nauseous. And a headache. And fog. And punchy eyes. And on. And on. The malaise is brutal today. All I have done today is make my way down to the bathroom and grabbed some water. That's it. And in doing so I collided with a shelf and wiped it out. Because I am not all there. Not entirely aware of where and what my body is doing. A thought occurred to me whilst getting my water. This is not entirely dissimilar again from that flu like feeling. It feels like I have a bad flu. It comes with more fun than that. But part of it. Is that same fog and ill and nausea and bleh. And I considered, when I had flu before I wouldn't spiral out. You just get on with it. I'm ill. It's not good. Horrible. But it'll resolve. And then I realised. This isn't like having a flu once in a year. It's like having flu every week. Week in. Week out. It never give...

Jan 27 PM

 Rough day today. Perhaps it was the fucky sleep. Perhaps it was the morning crash. Then the afternoon crash. Then the evening crash. Today has been a very low ebb day where I have felt particularly ill all day. Just. The malaise dialled up high. Today is the first day in a week or so where I have struggled in the morning. But all round today was hard. Having come off a real dip in mentalry last morning, today, perhaps unsurprisingly, the mentals have wobbled hard. I have dipped in and out of hopelessness. It is hard. When curled up in a ball feeling nauseous for the umpteeth time. To feel hopeful. I have wobbled. Hard. At times that ending it all feeling has been close and real. Not in a dramatic way. Just a practical way. Are we there yet buddy. I think we might be there. No one would blame you. And it would be a relief. I stood in the kitchen today. Barely able to stick a small ready meal in the microwave. So fucking far down the capability slope. It's. I don't know how to e...

Jan 27

 4AM. Sometimes. Around about here. Just a little earlier. Is the very worst bit of being alive. It is the 3AM portal to hell. Or more popularly the "3AM vortex" in psychological terms. No. I am not making it up. But it's not  just  a psychological thing. It's a combination of things. It is - typically - a low ebb in the rhythms of your body. The point of lowest blood pressure. The point of lowest cortisol. The point where your heart has its most variable patterns. Where your sympathetic system is lowest. Your immune system dips the lowest. Your body temperature cools to its lowest point. In real terms this time of night correlates with a  bump  in the general populous of death. And incidents. And a peak of suicidal ideation. Most suicides happen around this time. You might even say, for me, particularly, uniquely, it is my absolute nemesis point. Because a lot of the things that are not working in me, are working least well of all at around that 3am point. A wh...

Probable diagnosis + CFS Autonomic sources for me

 This is the meta state of Everything. The explanation, diagnosis and sources of why I am like I am.   I’ll give you a clear, bounded, clinician-grade headline summary , with explicit uncertainty where it belongs. This is not a definitive diagnosis — it’s the most coherent explanatory model that fits all the data you’ve shared across conversations, without special pleading. I’ll separate what I’m confident about , what is very likely , and what remains open . Headline summary (plain English first) Your illness is best explained as a chronic, post-trigger autonomic regulation disorder with hypovolemia, venous pooling, and gut–brain axis instability — currently labelled clinically as CFS/ME, but mechanistically closer to dysautonomia with functional GI involvement. In other words: CFS is the label . Autonomic mis-regulation is the engine . The most likely core diagnosis (mechanistic) Primary process Chronic autonomic nervous system dysregulation , characterised by: Low effec...

Jan 24

 Hmm. Today I was doing ok... until I wasn't. Fairly stable wake up routine. Hydrated. No food. Still stable through to midday. Started playing games, still no food - needed to eat. Ordered a sandwich + salad + drink. Bigger portion than I  typically  eat these days - I tend to eat very small most of the time. I was fine, playing a game, about an hour after eating. I could feel myself slow down. And nausea uptick. I ignored it, and powered on through. It steadily got worse. And hour and a half after eating - 4.30pm - I threw in the towel. Made my apologies. Declared I needed a "nap". Not really. What I needed was I knew a complete stabilisation thing. Recovery position. Slow it all down. No energy exertion - not even game playing. Did that. Things went from bad to worse. Big nausea uptick. Blood withdrew to my core, hands and feet frozen. Felt super ill. I "accidentally" clenched my right arm - about 5 seconds later this made me feel even more ill. Realised I wa...