Where it all began

A birthday trip to York bought me more than I’d bargained for! Taking me back to 1998 and the exact location of where I experienced my first migraine attack.

Earlier this week I took my friend out for her birthday. Brunch in the Partisan, York is where she wanted to go. I love York, the city, the history, but after spending the best part of 20 years in the North East, I don’t often go back there.

Before I moved even further north, I lived there for 5 years between the age of 18-23.

Photo by Karl Moran on Unsplash

Me and my friend took a walk around Museum Gardens, the shambles and the York walls amidst all the sunshine and rain. We enjoyed a hot cacoa indoors during the worst of it and enjoyed the very best of a warm and muggy day.

Along part of our walk, we were coming off one of the walls by the art gallery and the corner of Gillygate.  I used to live in the flat above what is now a hairdressers, right on the corner. No. 1 Gillygate.

I’ve been in the spot before now and again in the last 24 years, but never have I made the connection that this place, this flat, the bedroom above the entrance door, was the first place I ever experienced an attack.

It brought a lot back…

I’d been out clubbing to Sheffield for a friend’s birthday. My first super-club experience and the start of many years clubbing to come after that. Any Crasher kids in the house?

I saw a girl I knew from school that night. She asked if I’d taken any drugs. I hadn’t.

Though I drank, I hadn’t drunk much in the way of alcohol this particular night. (From this moment on, clubbing was always about so much more than drinking for me.)

When I finally went to bed and fell asleep, sure it was about 8am, I woke up after a couple of hours with the most agonising pain in the back of my head.

And when I say agony, I mean agony.

A pain at full force and full intensity all the way around the back of my head. One that I woke up with just there. It didn’t lesson in any way.

I was in so much pain that I actually thought I was dying.

Photo by Aarón Blanco Tejedor on Unsplash

Would you believe that at the time it never occurred to me to ring an ambulance?

Sounds bonkers right? Surely if you’re experiencing that level of pain that’s the first thing you’d do? That’s the only thing you’d do?

Nope, not me. The thought never even crossed my mind. Not during any one of these attacks that erupted sporadically but with some regularity from this time forward did I ever consider that this level of pain was worthy of a trip to hospital.

As a side note, a couple of decades later, I came to realise I was co-dependant and found out that one of the signs of co-dependency is that you don’t seek medical attention when you need it.

I also came to learn that you should call 999 for an ambulance immediately if you or someone you’re with experiences a sudden agonising headache resulting in a severe pain unlike anything experienced before, alternatively, if the headache is combined with high fever, confusion, stiff neck, prolonged vomiting, slurred speech/numbness/weakness and/or if headache does not relieve chronic or excruciating pain.

If I’d been aware of this or had any one with me at the time of attacks to advocate for me, I would’ve made many dozens, if not hundreds of trips to hospital in the last 24 years under these guidelines.

But as it is, when a person experiences an attack they lose over 50% of their brain function with each one. And I can testify that when you are experiencing pain to this extent and severity, it is difficult to speak, move and impossible to eat or drink, let alone ring an ambulance and sit in a fluorescent lit A&E for hours or end.

This backs a lot of what I’ve heard from migraine sufferers in recent years “A trip to the Emergency Room may even exacerbate an attack or provide only temporary relief – only to have the pain roaring back within hours after leaving ER (as per The American Migraine Foundation).

After what I’ve been through, experienced, read and researched, I have absolutely zero regrets of never having had once sought emergency services.

So back in my bedroom at number 1 Gillygate, York in 1998, I did nothing. I told no one.

Eventually, after what seemed like hours, I fell back asleep.

When I woke up, the agonising pain had gone and it was as if nothing had happened. It’s hard to imagine that level of pain and suffering, even as someone who has experienced it and lived with it all these years. I was totally fine once the pain had gone. No more feeling like I was dying, I was still very much alive.

You would never have guessed this was how I’d just spent the previous several hours and then many many episodes of the same type of attack across a couple of decades.

It’s only now I’m starting to piece together why this is so unknown, even in the medical field, and misunderstood by us all.

The one thing I did do the next time I was at the doctors, was mention it to my doctor.

I’d grown up with a friend whose mum lived with migraine. She used to get us to massage the back of her head and neck. I could tell she was in a lot of a pain. When I look back, I realise it was something I could feel vs something I could see.

As a result of these early childhood experiences, this was the only thing I thought this could possibly be.

“I get migraines” I told the doctor.

“Migraine is too hard to diagnose” was his only reply. And that was that.

At the time I believed I was following the appropriate channels. Isn’t this what the doctors are for? To take a serious health issue or concern to and to have them explore more about it, ask questions, run tests?

I felt the pain I’d experienced had been diminished. I didn’t feel believed. I certainly didn’t feel like I was being taken seriously or listened to. I felt like I must’ve been making it up. They were right, I was wrong.

I thought little more of it.

Now I look back on my life, around the same time and unbeknown to me, a depression set in. I often used to think of ways of ending my life. At no point did I realise that this was not normal, it seemed pretty normal to me, I’d seen it in the movies.

My friend came to see me one day and insisted we open the curtains in my flat and get outside. She accompanied me to Boots and encouraged me to buy some supplements. I can’t remember what they were, I couldn’t understand where she was coming from or why she was even bothered about me.

To everyone else it was Amber as normal. Performing well at work, never any sick days, absences or late arrivals. Partying every weekend, smoking and drinking. Silks/The Gallery, Tofts and later, Ikon & Diva were my local go to nightclubs.  Come on…you’ve got to remember Ikon & Diva!?!

I can’t recall now if there were any further attacks of this particular type of migraine between times, but I do remember another attack of the same agonising nature when I was 21.

I was in Derby for the weekend visiting a friend. We’d been for a night out in Derby. This time I had been drinking. Late at night, she went to bed, I went to bed.

I woke up in the middle of the night in indescribable agony round the back of my head.

Same thought process as before “I must be dying”.

I couldn’t lie down because the pain was even more intensified when I did so I went downstairs and sat on the sofa.

Eventually, I fell asleep sat up.

In the morning, my friend came downstairs to find me already there. Because she was there, I did tell her about the agonising pain and how I felt like I was dying.

“Why didn’t you wake me up?” she asked.

The thought never crossed my mind.

Within a few years, I’d had a few odd attacks of this same nature and knew enough to know by this point that although the pain was to such a high level that I felt like death could be the only possible outcome, I was in fact, not dying.

This particular type of attack only ever – and still does only ever – happen during the night-time.

Somewhere in my early/heading towards mid 20’s, I made a direct link to the concussion I’d experienced at the age of 17. I came to realise this had been the trigger behind this particular type of attack.

I never voiced this to anyone.

Not that it would have mattered anyway, given the experience I’ve had of repeated visits to the doctors over a 20 year period.

2020 was the first time I’ve seen post-concussion migraine acknowledged as a specific type of migraine attack that is now becoming more recognised thanks to the Migraine World Summit.

It seems very recent for something that I’d been experiencing for 22 years by this point and been aware of myself for the best part of this time.

So I’ve done a little background research thanks to my good friend Google as I am becoming interested in the history of migraine disease, sparked by a topic about its history in this year’s Migraine World Summit.

Even though there are early cases and various reports and writings for hundreds of years, more so in the 19th and 20th century, in both the 19th and 20th century it became suggested that the cause of such persisting symptoms was “compensation neurosis”. Simply because of the correlation made between people suffering to the extent that they were and receiving compensation on the back of being injured at work or in war. In as recently as the 60’s, it was suggested that the condition only occurs in situations where people stand to be compensated for the injury.

Because of opinions such as this, tied in with doctors receiving limited hours’ worth of training on headache and migraine, hundreds of millions of us suffer in agonising isolation. What we face and are living with is hugely misunderstood, we are not often taken seriously and receive little to no support.

Coming across insights such as this in my research makes me feel very angry and I often find myself becoming triggered by what I find.

Photo by Andre Hunter on Unsplash

Alongside typing this up, I’ve been asked by my healing coach about why I am trying to convince anyone to understand this god-awful disease better, take the world’s 2nd most disabling condition seriously and see to it that proper support structures are put in place for those suffering and struggling.

It’s got a lot to do with the fact that I cannot even begin to put into words how much I have struggled and suffered as a result of not being listened to nor taken seriously. Having no one who understood the impact and severity of what I've been living with all these years (not even and especially the healthcare professionals and those closest to me).

What I’ve come to realise and recognise is that when people are understood, listened to/taken seriously and effectively supported, they heal.

Nearly 3/4 of the way through 2022 and 24 years after experiencing my first attack, I am now able to communicate how I really feel and how much pain I’ve been living with all this time, in a way that others can comprehend.

I’ve have made a connection to being able to give voice to what we are experiencing and living with being one of the greatest challenges we face in the chronic illness community.

As a result, my WHY has become more about educating people like me, who have been through and are going through what I have, so that they can start to learn how to give voice to how it really is for them.

When you are able to communicate to others how you really feel and what is going on for you in a way that others get what you are saying, you heal.

Thanks for reading Warrior Within! Feel free to share with others.