The Founders Story

Hi , I'm Shaun.

In October 2024, I was Diagnosed with Cerebral Venous Sinus Thrombosis (CVST) - A rare type of blood clot in the brain. Since then, Life has changed in ways I never expected.

I'm here to share my journey - The ups, the downs, the symptoms, the setbacks, and the strength it takes to keep going. From medical challenges to everyday life adjustments, the CVST Foundation is about raising awareness, being real about chronic ilness, and showing that even when life changes, we can still move forward - one step at a time.

A little backstory on how I ended up where I am today

Back in late September 2024, I started having awful headaches that just wouldn't shift. I thought it was just nasty head cold - the weather had turned autumnal, and I figured it was nothing major. But after over a week of feeling worse, not better, I ended up in my local hospital on the 26th September.

The headaches has become unbearable, I was constantly vomiting, and light felt like knives in my eyes. I could barely get out of bed.

The hospital told me it was probably just a severe migraine, gave mr anti-sickness meds, and sent me home with paracetamol and ibuprofen. Nothing more.

We had a trip planned from Scotland to near Windermere, and the doctor actually encouraged me to go - saying the migraine would likely pass.

Little did I know, this was the start of something far more serious: my journey to being diagnosed with Cerebral Venous Sinus Thrombosis (CVST).

The Trip that changed EVERYTHING

On the 28th of September 2024, we set off for Windermere - a much - needed family break after a long and tough year. I was really hoping for some rest, some peace, and a chance to just breathe again. If only I knew what was around the corner....

There I was in the passenger seat, hood up, sunglasses on, trying to block out everything - light, noise, the world - battling what I thought was a relentless migraine.

The 3-hour Journey felt endless. I was so unwell, but we went ahead with the trip on the doctor's advice, hoping the migraine would finally ease up while we were away.

I didn't know then that is was just the beginning of something far more serious......

Hello Windermere..... But not quite the start I had hoped for!

We Finally made it. Our Long awaited family break to Windermere had begun - but for me, it started in bed. The journey left me feeling like my head was about to explode. Everything felt overwhelming. The "migraine" was still clinging on with no signs of easing.

Still, I pushed through over the next few days - determined not to let anyone feel like the holiday was a waste. Smiles on the outside, pressure cooker in my head. What I didn't know was that I was walking around with a potential ticking time bomb in my brain.

A wee day trip to Morecambe gave me a glimpse of normality - and for the first time in a while, I felt a little better. That glimmer of relief felt huge at the time.

Hello October - The month that changed EVERYTHING!

After weeks of feeling rough, this day felt like a breath of fresh air. The shun was shining, the company was perfect, and I finally felt good. We headed out for a walk with Buddy, who was living his best life people-watching and soaking up all the "hellos" from passersby.

A slow wonder around Windermere, a lovely little cafe lunch, and over 10,000 steps later, I was shattered - but happy. That night, I felt tired and a bit dazed, but I just blamed the full day and fresh air. A cosy game of cards with the family and an early night rounded it all off.

I remember thinking: Maybe I'm finally turning a corner.....

(Hopefully the cuteness of Buddy makes you smile)

The day that changed it all......

So here we are... the day it all came to light.

Let me set the scene - a crisp, clear October day that slowly warmed into something truly beautiful. We were heading to windermere. I felt like the newest, most refreshed version of myself - like I'd finally found the person I thought I'd lost.

My brother, his partner, and my mum went off to explore Beatrix Potter World. Me? I had a different kind of day planned. Just me, Dad and Buddy the dog - coffee in hand and the open path ahead of us.

We wondered through the stunning scenery Buddy trotting along happily beside us. Gorgeous views, Peaceful vibes.... and the perfect little coffee stop. A set outside, Buddy people-watching, Dad and I enjoying a quiet moment.

Everything felt....... right.

But little did I know, this was the calm before the storm - the start of something that would change everything. This was the day CVST entered my life.

So.... Let's get into the hard stuff, Shall we?

After a peaceful walk and a lovely visit to Beatrix Potter World, we all met back up and started heading towards the cars. The plan was simple - back to the lodge for an early dinner.

I had originally planned to drive, but as we got closer to the car, something in me said, "Dad, you drive." We set off in two cars - my brother driving one, Dad and I in the other. Spirts were high. We were laughing, joking, even chatting about how a friend had reached out because I'd gone unusally quiet(if you knw me, you know I love to talk).

And then..... things changed. FAST

Suddenly, I couldn't get my words out. My dad was talking to me, but I couldn't answer. My right arm and leg felt heavy - like the were made of lead. My arm started jerking uncontrollably.

Dad noticed immediately. He pulled over. My brother followed. We knew something wasn't right.

The closest Hospital was 7 minutes away. Dad stayed calm, talking to me the entire way as I struggled to speak, to move, to understand. Once we arrived, I was seen quickly - then transferred to Lancaster Royal for urgent neurological care.

That was the beginning. A one-hour blue light journey. The moment life split into before and after.

The journey between who I was.... and who I am now

After everything suddenly change, two lovely paramedics arrived to transfer me to Lancaster Hospital. One stayed in the back with Dad and me - asking the usual questions, trying to keep things calm.

Because I was FAST positive, the hospital was already on pre-alert. Then came the question: "What's your weight?" Me struggling to talk, managed to blurt out: "Big. Big. Big." Not exactly helpful... but looking back, it's become one of those moments we can laugh about now.

And here's where being Scottish added a plot twist - Scotland uses CHI numbers, not NHS numbers. But guess who knows their CHI number off by heart??? Yep.... that's my party trick.

We arrived and were taken straight to resus.

Triage. Scans. All within 40 minutes.

Honestly, that's the NHS at its best.

The consultant who saw me?

He stayed last past his shift - just to make sure I was looked after.

The first scan ruled out a typical stroke (relief!!) But the consultant said he wanted to do a "just in case" scan

He reassured me: "It's incredibly rare.... you'd have ro be very unlucky" That scan? It changed everything. I was admitted to the stroke ward for the night, waiting to see the specialist in the morning. This was the moment between before and diagnosis.

Results Day: The moment I heard "1 in a MILLION"

A knock at the door. In came the consultant - early morning, though I hadn't really slept.

His first words? " You know how I said you'd have to be really unlucky....."

I just knew.

Then came the words I'll never forgot:

"You have a 1 in a million blood clot in your brain. It's called CVST."

I lay there as his voice turned into a blur. Everything felt distant. I started to cry. I was scared, overwhelmed..... and so unsure of what this meant for my future. I remember asking him to please come back during visiting hours - to explain it all again to my parents, because I knew I wouldn't remember everything he said.

And just like that, my treatment began:

Heparin injections

Warfarin

A cocktail of meds to manage the pounding headaches nd relentless nausea.

This was the beginning of my 10 - day hospital stay on Lancaster. The beginning of a new life, really. The day CVST became part of my story.

Route back to Glasgow!

After 10 days in Lancaster, I was repatriated to Queen Elizabeth University Hospital in Glasgow and admitted to the Acute Neurology ward.

I was welcomed by an incredible Multi-Disciplinary Team (MDT) - Neurologists, radiographers, OT's, Physios, and speech therapists - all supported by some of the kindest nurses I've ever met.

This marked the beginning of nearly 9 weeks in hospital. It was a blur of scans, non-epileptic seizures, appointments, and constant effort to become a functional adult again.

Massive credit to the Physios and Speech and Language Therapists - two teams that took time to understand me, listen to what mattered, and even learned more about CVST to support me properly.

My first OT was wonderful, but sadly was replaced by someone who didn't understand my needs - a tough part of the journey.

While in Lancaster, I was also diagnosed with papilledema, which was closely monitored throughout my Glasgow stay.

I wouldn't have made it through this blurry, overwhelming time without the love and support of friends and family. You know who you are - Thank you.

The Return home

After weeks in hospital, the return to home truly begins.

Everyone I've spoken to says the same thing: when you get out of hospital, its the small comforts that matter most. Your own bed. Your own mugs. Your own space. And of course.... your pets.

So what was the first thing I did after getting home? Ordered a brand new bed - thanks to my amazing parents.

Why?? Because due to the pressure in my head, I was told I had to sleep at an incline. But I wasn't given any realistic way to do that when I was discharged. So my family researched and found an adjustable bed that actually suited both my medical needs and my age.

That first morning waking up at home didn't even feel real. I'd dreamed about it for weeks - and now, here I was. Home, with family. With Buddy. With lighting coming through the window again.

Photo taken the morning of my discharge. I didn't know it at the time, but this was the beginning of something better.

What Aphasia means to me.

Aphasia means knowing exactly what I want to say, and being trapped behind a wall I can't see but feel constantly. It means watching words I once used freely slip through my fingers like water - unreachable, but not forgotten.

It means frustration when people assume I'm confused or "not all there," when I'm very much present and fighting for every word.

It means relearning communication: with my face, with my hands, with patience.

It means grief for the fluent self I once was - and pride for the one I am now, who still speaks, even if it sounds different.

It means depending more on others than I want to - and learning that needing help doesn't mean weakness.

It means silence, repetition, wrong words, blank stares... and still showing up to try again.

It means that every sentence I finish, every message I send, every conversation I survive - is a quiet victory.

Aphasia has changed me.

But it hasn't erased me.

THE WORDS I KNOW, BUT CAN'T FIND

"THE WORDS I KNOW, BUT CAN'T FIND" - A POEM ABOUT APHASIA BY SHAUN GALLAGHER

I open my mouth, but silence wins,

The sentence dancing just under my skin.

It's there - I swear - I see it whole,

Then watch it vanish, swallow me whole.

I know the word. I feel its weight.

It lingers just beyond the gate.

A name, a thought, a simple phrase -

Now lost in fog, for endless days.

You speak to me with patients eyes,

But time runs out, and so do tries.

I nod, I smile, I try to joke.

While drowning in the words I spoke.....

.....wrong. Or backwards. Or not at all.

It's like my voice forgot to call.

I read the signs, they twist and blur,

Each letter fighting to occur.

I miss the flow of quick replies,

The-back-and-forth, the witty highs.

Now every talk's a fragile climb,

One pause, one shutter, out of time.

But still I speak - in looks, in hands,

In stubborn hope that understands.

I build my bridges word by word,

Through broken speech still me is heard.

So if I stop, don't walk away.

Just wait. Just breathe. Just let me stay.

The words I lose are not my end -

I'm still the story I intend.