Rebecca's story

RebeccaHi. My name is Rebecca and I’m 42 years of age. When I was aged 11 I woke with a migraine that lasted for 12 days. From then on I had migraine every 3-4 weeks that lasted between 5-10 days. I visited the GP who wanted to wait until I had completed puberty before putting me on medication. When I reached the age of 16 they improved dramatically and reduced to approximately four a year.

I had failed my GCSEs due to missing so much time from school, but I managed to resit, passed and went to nursing college. For the first year they were manageable, but during my second year they became intolerable and the frequency and severity changed. I developed aura also, but had a permanent pain behind my left eye, runny, blocked and burning nose and a blood shot and watery eye. I was put onto triptans, which failed and so I used painkillers to get me through college.

Following my graduation my head pain continued and became daily. I thought it might be medication overuse headaches so I took the decision to stop taking them. It was tough because I was still in so much pain and after a year without them I decided to take some. Within the hour the pain went. After having a migraine daily for 12 months the relief of not having any pain was amazing, however it didn’t last long and I was back to daily pain.

This continued for many years and countless visits to the GP who were unwilling to refer me to a neurologist. Instead I embarked on alternative treatments such as reflexology, acupuncture, cranial osteopathy, reiki and yoga, but again these treatments failed. I also saw a physiotherapist, chiropractor and osteopath again to no avail. Eventually I ended up in A&E as I woke in excruciating pain and was unable to see. They gave me morphine, which I had convinced myself had to work but it didn’t. I was kept in for 48 hours and advised to see my GP, which I did and was diagnosed with daily chronic migraine and cluster headache. I still wasn’t referred to a neurologist! Off my own back I contacted an organisation called OUCH (Organisation for the Understanding of Cluster Headache) and they put me in touch with a head and facial pain specialist. After a four month wait I was seen and was diagnosed with chronic daily migraine, trigeminal neuralgia and a rare condition called hemicrania continua.

I initially had nerve block injections which I had a bad reaction to and ended up in hospital, medication was unsuccessful and the treatment for hemicrania continua, indomethacin, I couldn’t take because of the damage it can cause to your stomach. I also have gastritis so it was a no go for me. I was given gabapentin for the trigeminal neuralgia and now receive Botox treatment every three months which to date is also proving unsuccessful. If this last round does not work there is a high chance they will stop it. That will be the end of the road for me and I will probably be referred to pain management.

Migraine has destroyed my life. It has affected every aspect of my life including my education, my relationships, my personal and professional development (I am now unable to work), my ability to carry out normal daily living activities, my self esteem and confidence, my social life and my zest for living. It has also affected my mental health and caused severe depression as I am so limited as to what I can do now. I think the most upsetting for me are the people that have walked away from me because they assume you will cancel social occasions so stop asking. I had so many friends but now can count them on one hand. I also feel very isolated and alone living with conditions that others don’t understand and sometimes can’t believe that you can be in pain on a daily basis. I have had to adapt my life around the pain and can now only live within my own limitations. I am a fighter though and will never give up battling these conditions even though I often feel that way.

Migraine needs to be more widely recognised and the impact it has on an individual’s life. It also needs to be emphasised that migraine is not just a pain in the head but a whole lot of other autonomic features which are often forgotten about or not even acknowledged. I will continue to fight and despite what it has stolen from me I will never let it win.

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.