Make your own sunshine: Taking matters into my own hands

Hey! Hey!

Life with a leaky spine isn’t exactly the story I thought I’d be writing, but here we are anyway. Welcome back to my corner of the internet where I can confirm it is absolutely not just a headache, honey! If anyone says otherwise, I may gently place a textbook on their head and ask how that feels.

Welcome back and thanks for joining me for this much overdue life update entry! It’s been a long while since my last medical mystery update and well, I think it’s safe to say I’ve amounted more medical notes than a season of Grey’s Anatomy (which, if you’re still as dedicated to the show as I am, you’ll know they appear to be reaching the realms of unbelievable with their storylines—though frankly, my case notes could give them a run for their money and probably earn me my own spin-off).

Back to Lucy’s Anatomy …

Now, something about me is I am absolutely an overachiever! You tell me I can’t do something? Best believe I’m now about to do it. You tell me not to worry about those side effects because they’re rare? Babes, I’m the reason they’re listed! You tell me I wouldn’t be able to function if it were that? I ran a marathon out of pure pettiness because my respiratory consultant didn’t want to do his job! (Look, spite is technically a fuel source).

All that considered, you can imagine how I felt upon discovering a research article from the US published on 2nd October 2025 that could potentially offer a comprehensive explanation for the array of symptoms that appear to have baffled multiple neurologists up to this point. Picture me clutching the laptop like it’s the Chamber of Secrets.

The article in question was titled: Mast cells regulate the brain-dura interface and CSF dynamics.

Now, I’ve become something of a self-professed neurology geek and there is nothing that passes the time better than decoding a whole heap of neuro-themed medical jargon. Therefore, I was more than happy to cosy down in bed with the article, my laptop, a notebook and pen! (Romance is not dead; it’s just redirected.) So, for anyone who doesn’t want to read the linked article, here is my glitter pen summary of what has been discovered!

The main idea presented by this study is that certain immune cells called mast cells, found in the protective layer around the brain (also known as the dura mater), help to control how cerebrospinal fluid (CSF) flows in and out of the brain. These mast cells are also the same cells that play an important role in protecting the brain from various infections. In short: they’re the nosy neighbours of the central nervous system.

These mast cells in question are responsible for releasing chemicals like histamine which help recruit other immune cells during inflammation. The released histamine when they are activated changes the way fluid moves between the brain and its coverings. In short, if they become overactive, they might also be responsible for causing or worsening brain disorders … (Because my body clearly loves an overachiever almost as much as I do.)

Lost yet? Don’t worry. Let me un-lose you!

A CSF leak, as the name implies, directly involves cerebrospinal fluid. This fluid in question escapes through a tear or weak point in the coverings around the brain or spinal cord. When this happens:

• Pressure inside the brain drops.
• The brain can sag downwards
• Symptoms such as severe headache when uprights, neck stiffness, tinnitus, dizziness, nausea, brain fog and visual disturbances can occur. Basically your brain says, “Stand up? Absolutely not.”

This brand new paper in summary has found that the mast cells sit right beside the openings where CSF flows out of the brain. When these cells become activated they can shrink the CSF drainage space, temporarily reduce CSF flow and lower intracranial pressure …

Flitting back to my CSF leak, the low pressure headache is a result of lowered intracranial pressure!

Therefore, this means the condition Mast Cell Activation Syndrome (MCAS) could:

• Mimic CSF leak symptoms and explain why individuals have “low pressure headaches” but no visible leak on the imaging.
• Chronic activation of these mast cells can weaken connective tissues due to the exposure to constant histamine. Over time this may cause micro tears (spontaneous leaks).
• Chronic inflammation could make existing CSF leaks harder to seal even after patching.
• Both CSF leaks and MCAS can alter pressure regulation.

Hand me my honouree doctorate now …

Reading and understanding this article left me with my jaw dropped … Although, I’m not really sure where my new found discoveries would get me given something that is groundbreaking in the US will take a minimum of 10 working years to even float over to here in the UK. Not to mention the several years on top of this it will take for the NHS to acknowledge and offer funding for such discoveries … By the time they approve it I’ll be a hologram delivering this update on a floating screen.

Nonetheless, given the not cheap fee attached to my lovely neurologist down in London, it seemed only right to pitch this potentially insane theory to her first of all …

Yep, that’s right, I seem to have reached that glorious stage of chronic illness where I’m gonna rock up to appointments with research papers, diagrams, a thesis and three highlighters!

It could only happen to me,

X O X O,

Your favourite headache!

Next time ~ The outcome of the consultation down in London

Make your own sunshine ~ Opalite, Taylor Swift, The Life Of A Showgirl