Sharing my migraine experiences

My story

 

We spoke to Donna about her migraine experiences and why despite everything, she continues to fight! 

"At the age of 15, whilst studying for my GCSE’s and at the same time being diagnosed with ME, I suffered my first migraine. Little did I know that this event would go on to shape my life in such a significant way that it has. My Grandma had had migraine throughout her life, with my mum often recalling how she used to speak backwards - losing the ability to function, and that if they were out whilst this happened, both she and her brother would have to sort out how to get home quickly. Never in a million years did we think that migraine could be hereditary and I would end up suffering in much the same way as my Grandma had done before me.

Despite suffering from debilitating migraine and M.E, I had always dreamt of being a teacher right from the age of four years old. I was not going to let these “little” things stand in my way of achieving my dreams. My dedicated mum would to have to dress me and take me to school to sit my exams, wait outside whilst I sat them and then bring me home and put me to bed. We encountered this scenario right the way through my GCSE and A level years. My school told my parents at one point that as I had lost so much time in school I should take an extra year to study for my A levels, as no assessment was possible. You can imagine how devastated I was when I heard this analysis of the situation and that everything that I had been through and battled against to achieve my dream was being taken away from me. I began to feel that I would never become a teacher. Having mulled the situation over I decided that I did not need another year and despite what the teachers were saying I was going to prove them wrong and go to university to do my teacher training. Sure enough my self belief that “I could do this” kept me going and whilst being unable to attend school regularly and revise as I was bed bound and suffering from debilitating migraine, I achieved 4 A levels which won me a place on a course to do my bachelor of education degree. 

After 3 years of studying at university I secured my first job at an Infant school to teacher year one children. I was living my dream! However the migraines refused go away. In fact on starting my first teaching job my migraines began to increase in frequency and also intensity. Despite this I had responsibilities now and a class of 5 year olds who depended on me. 

I would wake up most days around 5am with a head that felt like it was going to explode and being sick, however by 9am I had managed to practice mind of matter and be in school ready to teach my children.

I was determined that migraine wasn’t going to ruin my life!

Up until this point I hadn’t sort any form of medical attention for the migraine as I was under the mistaken belief that it was “just a headache” and there wasn’t a lot that the doctors could do to help. My Grandmother had never sort medical intervention to help her so presumed it was just something that I had to learn to live with.  

Eventually my hand was forced. I remember standing in the newly built cooking area at the school where I worked and was talking to my colleagues when all of a sudden a pain surged through my head. It felt like nothing I had experienced before.

In that split second I felt like my brain had literally shut off and switched itself back on again, just as if a computer had crashed.

I was left unable to speak, know who or where I was, walk (as my limbs had lost all strength and function normally) - to all intense and purposes it looked like I had had a stroke. My worried colleagues rang my mother who came immediately to collect me and took me straight down to the doctors. My GP examined me and confirmed that in fact I had not had a stroke but had suffered from an intense migraine episode. Unfortunately this was not a “one off” experience and became a new “feature” that I had to deal with. Always remaining positive and despite this I would never give in and take time off sick something that was “just a headache” after all. No matter how unwell I felt I would be in school ready to work with a smile on my face. If anyone asked me if I was ok my standard issue response was “I’m fine” and as there was no outward signs of the intense turmoil and storm going on in my brain, my colleagues assumed that this was the case and not that I was regularly concealing the true horror of the situation I was facing on the now daily basis.

After researching on the Internet I decided that I just couldn’t keep on ignoring this anymore. I needed help and needed help fast. I located Dr Brendan Davies a consultant at the North Midlands Migraine Clinic at the University Hospital of North Staffs. I decided to see him privately, as I wanted this sorting fast so that I could continue on with my life and doing the best that I could for the children that I taught.

Dr Davies confirmed that I had been “blessed” by my Grandmother’s genes with one the rarest and most debilitating forms of Migraine – Chronic Familial Hemiplegic Migraine and that in fact I wasn’t suffering from “just a headache”. Whilst this was a relief my journey was only just beginning. Over the next 3 years we embarked upon a magical journey through a variety of migraine drugs and as time went by the list of ineffective drugs grew and the more “off the beaten track” drugs were tried. At one point I was even having some being imported from abroad to try and stabilise the situation. We tried everything together - DHE infusions, Bi-lateral Occiptial Nerve blocks, Botox, Sleep studies, MRI scans and one type of tablet after another. Nothing seemed to be of any benefit.

Whilst all this was going on I was managing to hold down my job, keep smiling and convince my boss and those around me that everything was fine and that I was just having some problems with headaches. My Philosophy was always “You only live once and that you’ve got to make the most of what you have got and NEVER give in”.

Dr Davies after trying so hard to find a solution for me decided that he couldn’t offer anything else but he knew a man that potentially could. He referred me to the National Hospital for Neurology and neurosurgery in Queens Square, London to see one of his colleagues - Dr Manjit Matharu. I was told that Dr Matharu was involved in a programme, alongside Neurosurgeon Mr. Laurence Watkins to use an implanted device called an Occipital Nerve Stimulator and that they were having promising results in reducing migraine through delivering a electrical impulses to the occipital nerves to interrupt the pain pathways.

After undergoing assessment and testing I was accepted onto the programme. This however was the easy part, the hardest part was to gain funding for the operation from my Primary Care Trust as it was not yet funded on the NHS. To cut a very long story short I was initially refused funding on the grounds that the condition I had was not sufficiently rare and that migraine was just a headache. In characteristic form I didn’t take no for an answer and hired a lawyer – Gwendolen Morgan to take on my case against the PCT. In May 2012 I was granted funding on the grounds that my condition was in fact rare and was then immediately put on the list to undergo surgery. The stimulator was implanted in November 2012 and I returned to my teaching job after just 3 months absence!

I thought that this would be the answer to my prayers, but again events proved that this was not meant to be. I always say that the minute you learn to cope with things and begin to get life back on track something else happens. I thought Migraine could not get any worse than it already was for me waking up daily with a headache. How wrong can you be!!!

In November 2014 I was admitted to my local hospital suffering from a Malignant Hypertensive Emergency, my blood pressure had shot up overnight from normal to 258/153. After 6 days of uncontrolled blood pressure, headaches like you wouldn’t believe and beginning to loose a grip on reality I was taken into Intensive Care. This was probably one of the scariest moments of my life! I spent 5 days in intensive care and another 2 weeks on a ward. Neurologists would come and go and most often say you’re too complex for us. London need to sort this out! 

This event triggered a CONTINUOUS (24/7) migraine. I lost the power of fluent speech and developed a severe stammer, my eye sight became damaged and the pain was like nothing I had ever experienced before. After 14 years of doing my dream job, I was faced with no other option but to give up the job I loved because of the state that I was now in.  How could anyone with such severe speech dysfluency be an effective teacher? 

I was utterly devastated at the loss of my career but more importantly I was in mourning for the person that I had lost. 

Overnight I had become someone that I didn’t know and what hurt me worse of all was the severe stammer that I had developed. I quickly realised that people no longer treated me in the same way and I constantly found myself appologising for the migraine that had caused it.

I am now 2 years down the line since my crisis event. Along the road I have had many set backs with my health, have developed complications from the continuous migraine and endured many painful treatments in pursuit of relief. As I sit here now I’m recovering from LP shunt surgery, as my neurosurgeon Mr. Watkins found that pressure had increased in my brain following my Hypertensive crisis. I’m waiting for surgery on my oesophagus to help the swallowing problems that I have developed and I STILL have the CONTINUOUS MIGRAINE and the STAMMER that appeared so suddenly overnight. 

My family and friends are wonderful and keep me going. Without their loving support I would not remain so positive and upbeat. My Mum and Dad are exceptional and are constantly by my side throughout all my treatment, appointments, hospital stays and regular trips to London. We face things together, no matter what life throws at us, as a strong, united family. Although they often say that they’re glad that they only have one child! I say the stork said “suckers” when it dropped me on their doorstep! At times like these you find out that real friends are the ones who are prepared to stand up and be counted, offering loving support in any way they can. I am so lucky to be blessed with wonderful friends who we lovingly term “babysit me” and keep me going throughout the week, visiting to me to provide a little bit of distraction therapy and light relief.

When someone terms Migraine as “Just a headache” (I’ve even been told this by some doctors!) they don’t see the impact that this can have on a person’s life and those around them.

All they have to compare it to is the headaches they suffer themselves. People term a bad headache as a “Migraine” but is it really a migraine or just a “bad headache”? A short lie down or some pain relief medication is all it needs to sort it out. Only those that suffer or see those that suffer from migraine truly understand how challenging life can be.

Life is very different for me now, it is not one I would have chosen for myself - but life goes on. It may not be as I had envisioned as a teenager but I never give up hope or loose faith that one-day things will be ok. I live by my philosophy of “you only live once and make the most of what you’ve got”. Even if it is a bad day I get up, smile and carry on as best as I can. I love nothing more than getting out of the house, going shop, out for lunch or even the theatre (yes I have been known to sit there in sunglasses and earplugs). For that short time life is normal!  It’s no good dwelling on woe is me, as people begin to loose interest. To combat the pain I use distraction techniques, as I find that this works better for me than medication. Whilst I’m doing something I’m not thinking about the constant pain. When it’s in your head there is no getting away from it!

Outwardly it’s hard to see any evidence of what goes on inside, Migraine is a hidden disability. People often think that because they can’t see anything and you’re not complaining about the pain, that things are suddenly ok and that you are miraculously better. It surprises them when you say “well actually things aren’t that great at the moment”. You begin to learn to live with pain, it becomes the new norm until “someone” thinks you can cope with some more and ramps it up again! I’m often told by friends that I’m one of the bravest people that they know and they don’t know how I cope in the way that I do. It’s not a case of bravery, it’s a case of having to cope because life goes on. I simply want to LIVE my life and not purely exist.

Remember you only live once and that you’ve got to make the most of what you have and NEVER give in to “just a headache”.

Migraine Awarness Week 2016 focuses on the reality of living with this neurological condition. Share your migraine experiences and get involved to help destroy migraine misconceptions. Until there is a cure, we are here to support all those affected. Until there is a cure, we are here to ensure all affected receive the help and respect they deserve. 


Migraine Awareness Week 2016

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