Current science states that there are no nerves that convey temperature or pain in the brain.
Well, not a normal brain.
Well… not as far as we know.
Since I’m terribly clear about the fact that my sensory experience of life has been extensively revised over the past quarter century of constant and increasingly centralized (that is, brain- and spine-driven) neurogenic pain, I’m going to sail sweetly right over that assumption and get on with today’s topic.
We live in the messy and extensive reality of the world outside of labs, scientific studies, and academic debates. Don’t worry about them – they’ll catch up eventually, usually in about 10-30 years.
Brain inflammation
Brain inflammation is one of those topics which patients and wholistic or ancillary professionals have been working with & evolving strategies for for years, but many clinical practitioners have trouble working out how it applies in real life, let alone how to work with it given current techniques.
Practical point:
This is not a dis of those practitioners, it reflects their environment of practice. Their training – and liability insurance coverage – focuses on what has been proven through multiple double-blind placebo-controlled studies, preferably on thousands of patients. Those take time, funding, lots of patients (which rare diseases don’t provide anyway), and a crucial position away from interfering with vested interests.
This is why clinical practice lags 10-30 years behind practical patient experience.
Where were we? Oh – brain inflammation.
One of my dear friends has been working specifically on chronic longstanding brain Inflammation, and it’s been validating as heck to see someone so smart, disciplined, and articulate work through that. Burny brain is, in my case, a sign of acute flare-ups, and talking the concepts over has helped me articulate my own situation.
And then there was Election Day and this lifelong historian & longtime spoonie saw my future get thrown on the flames.
NB: I don’t believe ideology or labeling, I believe that past performance is a good indicator of future behavior and, more importantly, that a written plan is a big fat clue about what to expect – and it’s not good for someone in my position.
After days of feeling staggered, my brain caught fire.
Inflamed brain, level 1
When a series of events, or one overwhelming and life-altering event, land in my life and awareness, my brain takes a few days to go into full bonfire mode. But it does:
Managing that
I depend on my well-established habits around self care and communication to mask my real state and continue to function, but it’s not reliable.
I crank up my vitamins, especially B complex, and do what it takes to get enough protein in. This is tricky, because eating is hard work and few things taste ok.
Keeping a stable schedule is important, to avoid feeding into the general autonomic instability.
Stabilize, stabilize, stabilize.
Since I lose track of time constantly in this state, I have to double-check whether I’ve taken my meds on time, and they’re one of the most important ways of stabilizing that there are.
If I had a bathtub, I’d take baths with vitamin C (20 min very warm; lie down on the C-powder as the bath fills) and then Epsom salt (20 min not so warm) then take naps – a fantastic 1-2-3 recovery technique that I really miss having access to. I recommend it highly.
Level 2
Once the flames get lower and my brain feels more like heavy coals, I know I’m making progress, although it doesn’t feel great:
This feeling of roaring combustion comes with big, fragile feelings. I limit contact and focus hard on noticing when & how I’m functioning, and grab tasks off the to-do list that relate to that.
So, laundry was a significant part of my weekend: no brain required, little physical effort, quick reward, and a huge improvement in my life. Now I’m dressing off the clean laundry pile rather than my drawers & closet, because I can’t focus on folding & putting away, but that’s okay.
More veg today, partly because I was finally hungry for them, and also because protein was too difficult.
All the olive oil all the time.
Level 3
This is how my brain feels today, more or less:
Honestly, this still sucks beyond belief, but it is improvement and improvement is good. I could eat in portions larger than half-cups and palmfuls, finally.
Today, I wanted to make some calls about getting something fixed, but that wasn’t possible – I kept going blank and stumbling into furniture when I tried (burny brain comes with worse coordination).
Instead, I went and got a ball of yarn to finish a project, which felt good and freed up more focus; with that, I dropped in at the law library and learned how best to approach an issue and then did some online research with that in mind. Now, when I do make those calls that i couldnt make today, I’m actually going to be much better prepared. Still not possible, but it will be at some point.
I wanted to make progress on another administrative task (paperwork, urgh) but my friend has taught us that, even though the clock keeps ticking, when the inflamed brain says “no”, it’s useless to argue. Let it go and rest that brain.
So I put on a movie. Then a dear old friend called out of the blue and we enjoyed reconnecting. Very good for the brain!
Level 4
With any luck, tomorrow my brain will feel more like this, still raw and hot, but somewhat contained, and with more cool spots:
Unless something else happens to shake my foundations. You never know. But still, I hope for continued improvement!
If you’re having trouble understanding brain inflammation as a physiological thing, write a query in the comments and I’ll explain…
Later <grin>