I wish for migraine to be accepted and treated as the world's third most common disease
I would like to share my story to raise awareness and to let other sufferers know that they are not alone.
I am a twenty nine year old female from Northern Ireland and I have suffered chronic migraines for seventeen years.
My first attack occurred at twelve years old. All I remember is the very strange physical symptoms, pins and needles in my arm, unable to hold anything in my left hand along with blind spots to my vision and a lack of being able to form a simple sentence. Then came the intense, throbbing, knife-like pain to my head accompanied my vomiting.
Bed rest in a darkened room for twelve hours and the pain had gone, leaving me extremely fatigued for another forty eight hours.
Living with migraine
As the months and years went my, these attacks seem to become more frequent, with an average of around sixteen a year.
But it wasn’t just the migraine attacks that I had to contend with, I now had developed what my neurologist called, chronic daily headache. And my symptoms are exactly what the condition is called, a headache every single day from when I wake in the mornings until I go to sleep. Quite often I can’t sleep due to the intense crushing/throbbing in my head.
Through my teenage years and into my early twenties, my chronic disability, which can I add is completely invisible to the outside world, had an effect on everything.
Impact on life
My education was greatly affected as I missed days off school and the days I did attend, I spent most of the time thinking about my headache and wishing it would go away. I could not concentrate at all.
Friendships were diminished as I was that friend who would cancel at short notice, the one who was grumpy, the one who always seemed to have an excuse not to stay out late or go to a party.
Any jobs I had, I would always be penalised for too many absent days and I would frequently be told to ‘smile’ more as I had to encourage my team and make customers happy.
Throughout these years I visited different doctors, three neurologists and sought help privately.
I went through the mill in trying every single medication known in migraine prevention and also tried ones that are not even directly prescribed for my condition. I did take over-the-counter pain relief, which had minimal impact and for those extremely severe migraine attacks, I took Sumatriptan. I tried physiotherapy, aromatherapy, kiniesiology, homeopathy, Indian head massage, acupuncture, psychology sessions, Botox treatments, Transcranial Magnetic Stimulation therapy.
And of course I tried the one thing that people would say to me on a daily basis, I drank more water!!
Now to my present situation. I am twenty nine years old and I live at home with my parents. I can no longer work, (I worked as a retail/hospitality manager for six years) due to chronic daily headache/migraine.
Each day varies in terms of pain severity. Some days I will have a headache that is like a tight squeezing, heavy feeling, which involves lying down with an ice pack for a few hours. Other days, known as the more common ones, involve a severe throbbing, stabbing pain in my head, sickness, dislike to bright lights and noise and result in being bed ridden for that entire day.
I also have severe depression which results in feelings of extreme guilt (what have I done in life to deserve this daily struggle but also the feelings of guilt for moaning about it as my life isn’t that bad compared to others), self loathing and feeling completely useless and lastly those horrible dark thoughts of life not worth living. Believe me, this is not the life that I envisioned for myself.
I have attended the National Hospital for Neurology and Neurosurgery in London for four years and in April 2019, after waiting for two years for funding, I received surgery called Occipital Nerve Stimulation. I had a battery implanted under the skin at my chest area which is connected to a lead running via my neck which joins to my Occipital Nerves at the base of the skull. The device delivers a constant stimulation to the occipital nerves in the hope that it will block certain pain transmissions and therefore ease the daily migraine pain.
Unfortunately it didn’t work and had no effect on my migraines. This was a huge blow and I have therefore had the device removed. I have been informed by my Neurologist at UCLH that in terms of further treatment on the NHS, there is currently nothing to offer me. As you can imagine this is hugely disappointing and rather frustrating that NICE have still not approved the use of Aimovig in England or Northern Ireland. I simply cannot afford private treatment to access this medication. So now my life is in limbo, currently suffering with pain every single day and praying that one day soon I can try a new medication or treatment for this disease.
I wish that every other migraine sufferer out there, whether you only have a few attacks a year, to those like myself who have it non stop every single day, that there is still hope in finding a cure to this debilitating condition and that in the very near future chronic migraine is accepted and treated as the world’s third most common disease.
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.