Something as simple as standing felt impossible
I no longer have a memory of my first migraine attack. All I remember vividly is that, from a very young age, I’ve felt pain in my head where I felt my head and my body were not connected so I lost the ability to move physically and where something as simple as standing felt impossible.
I wanted to close my eyes and for the pain to stop followed by the vomiting. By a certain age, I realised the migraine attacks were frequent and here to stay.
Dealing with the pain
I visited my GP as a young girl. Medication is trialled which you know doesn’t cure anything of course, but ‘helps’ with the symptoms. I went through so many different medication like Sumatriptan from the Triptan family, Nortriptyline etc. and what I found was, the medication knocked me out for a short amount of time. As soon as I was up, I felt numb, slow, confused but on top of it all, the pain was still there.
I was asked to keep a food diary; even now at age 27, I’ve found no links between something I have eaten and the onset of migraine symptoms. During a bad month, I was experiencing 10-15/20 migraine attacks a month and the most challenging aspect of this is continuing with life. Continuing with sports, revision, school/college/university, work.
Alongside this, balancing relationships and making time is hard. Without meaning to, I felt moody and angry with the people I cared for as I grew used to the vomiting and pain on a daily basis.
Explaining the impact
The hardest part of living with migraine, even more so than dealing with the pain and vomiting, is explaining how you feel. Migraine is invisible, people around you cannot see your pain to understand it. I found at times that people around me may have felt I was exaggerating or complaining and moaning too much, and with the fear of feeling judged, I felt less able to talk. It must look like I’m being lazy or I’m not bothered; but can you imagine any individual wanting to purposely sabotage their life on a daily basis?
The first thing I want to do when a migraine attack occurs, is stay still. On one occasion, I was at Alton Towers theme park with friends and much to my luck, I experienced a sudden migraine attack. Thankfully, my friends were very understanding of my attacks by this point and they understood that when I said I couldn’t move, it genuinely meant I couldn’t move.
To get from some part of Alton Towers (no recollection of where I had been at the time) to the car park during these attacks is not an easy thing to do (if you know how big Alton Towers is). All I knew was, I could not move, the pain was too much; the car park felt like it was on the other side of the world.
In the end, a first aid jeep picked us all up from wherever we were at the time and drove us back to my friend’s car. The amount of times this sort of thing has happened on day out; it feels normal by a certain point to expect something to happen which is such a sad way to live life.
The effect migraine has had on my physical and mental well-being is unexplainable. Over time, I have been asked to do less things as people felt I would rather be alone; so it’s a lonely journey. So many times I would make plans, and when it got closer to the day of the plans, I’d feel anxious and nervous. Most times you end up cancelling because the attacks are so dreadful to experience, you don’t want to put yourself through more.
And how do you explain that? It’s so difficult to explain you don’t want to push yourself because of that reason. You know what pushing yourself could lead to in: exercise, work, outside of work and in life generally.
Over time, I felt my mental health deteriorating. I would read the first line of a sentence in a paragraph for example and by the end of the sentence, I’d have forgotten what the first part of the sentence had said. I would find myself re-reading the same sentences over and over again. I started to find numbers and maths problems confusing. The part of my brain that could solve simple problems once upon a time, now felt incapable. My thinking time seems to have tripled. My concentration and focus has decreased. I cannot concentrate for longer than about 15 to 20 minutes at a time.
It is exhausting and it feels depressing. I feel like I am in a battle with myself constantly. Back then, I didn’t think it had anything to do with migraine. I genuinely started to look down on myself. The worst part of it all, is the memory loss (short and long). The impact that has had on my life is again, unexplainable. You feel like you’ve lost the will to live every day.
My cognitive functions are less sharp; I struggle to understand instructions and I have no understanding of why. All I know is it takes me what feels like forever to process and learn. It also takes me forever to think of words and construct sentences. On top of all this, the anxiety remains of falling behind/staying behind, the stress and negativity you feel is difficult.
Only quite recently, I felt to look into things more. I am constantly reminded I’m not the only person in the world that suffers. As hard as that is to hear when you’re struggling, it’s also true which lead me to read so many different migraine stories online. It felt comforting to know it wasn’t just me and I was not alone, that everything you felt was ‘real’ and not in your head.
If I can help someone feel less alone by sharing my story, then I would love to try. Acceptance is important in all of this. You cannot lose yourself or lose hope through your journey. Focusing on yourself is key. Only you understand yourself and what is best for you. If you need more time, take more time. If you need to make notes, make notes. Stick sticky notes up to remind yourself of things. Set reminders. Never look down on yourself. Always stay positive. Do not forget to laugh and smile. You are strong enough to get through the pain and everything that follows.
The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.