Clare's story

If you get migraine, or are a care giver for someone who is, just remember that you are not alone

Fortunately, migraine didn’t ruin Clare’s wedding day

My migraine journey first started with being diagnosed with migraine in 2011 when I was admitted to A&E due to confusion, visual problems, and weakness of my left arm. This came on suddenly and frightened the life out of me.

I was told I had a migraine.

The anxiety and pain in my head was unbearable. My work colleagues didn’t know what to do.

For a few years I was treated for regular migraine.

Then, in early 2013, I had this awful feeling come across my head so I sat down and I couldn’t get back up all. It was like looking through a spy hole or gold fish bowl – everything was distorted around me and I couldn’t lift my body. I couldn’t get anything to come out of my mouth to explain to the people around me what was happening to me.

Back to A&E

I was rushed to A&E. As I lay in bed all I thought was “what is happening to me?”. I felt like my brain and body was fighting against me.

I was shown some pictures by the neuro-consultant and he asked me to repeat what I was seeing. I couldn’t focus at all but I do recall him saying “I’m sorry you have had a stroke”.

My world fell apart at this point. I didn’t know how I was going to go on like that. I was lying on the bed, unable to move my left side at all, my face had drooped and I felt a pulling sensation on it.

My speech was entirely distorted and I just could not communicate. I knew in my head what I wanted to say but I just couldn’t get it out. I was exhausted I felt like I’d be ran over by a truck!

I was examined and sent for further tests – MRI scans etc. I was told there was an artifact showing and to this day I still do not understand it.

I spent a few days in the stroke ward, and then had several years of counselling and physiotherapy. I was given advice on managing medication and the condition itself by my GP and neurologist.

Left side weakness

Then, in 2017, I was diagnosed with permanent left side weakness. I have little movement in my left toes. I suffer with chronic back pain, and pain all over.

I have one good day in four. It’s been a struggle.

I’ve tried many medications for the pain, muscle spasms and paralysis in my left side.

It has not been an easy road.

I recently I started cognitive behavioural therapy. It is helping me accept this condition which has had a traumatic affect on my life in every way.

I was always a very positive person, very fit and active. The loss of independence and motivation due to the condition taking hold of me from pain, sickness, to urinary incontinence and losing my job a couple of years ago, has felt like the end of the world. It has led to anxiety and depression.

It’s been five years now since I was diagnosed with hemiplegic migraines, chronic pain and left side weakness.

Most of my family have been of no support, but a few have been there every step of the way.

I have become isolated and hope that some day I’ll gain some confidence back. People don’t understand and are ignorant to the condition.

ln my view, until anyone witnesses a major episode for themselves, they will say it’s all in your head. Believe me, you are not imagining it.

Anyone reading this, either going through any sort of migraine or who is a care giver, just remember you are not alone. There is great help out there, you just need to find it. A supportive GP and neurologist are a good start along with a caring family and support network of friends.

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.