The Dawson Family’s migraine story
Written by Penny Dawson (Dr PJP Gray MBChB MRCGP DRCOG)
In the 10 years I worked as a GP chronic daily migraine was a condition I had heard of but never come across. It was to become the diagnosis that would devastate three of our previously healthy children’s lives and one that would have a huge irreversible impact on all of us.
Chronic daily migraine is a genetically inherited primary brain disorder, diagnosed when more than 15 days in the month are dominated by migrainous headache. Heartbreakingly for our three children, the headache free days are rare.
William, now 19, Isabel 15 and Katie 13 are all under (or recently handed over to adult services in William’s case) the care of Dr Prabhakar, consultant neurologist at Great Ormond Street Hospital for Children (GOSH) and his excellent multidisciplinary team in the chronic headache clinic. However, our route to GOSH and a clear diagnosis was long and arduous.
In 2011 William was 14, enjoying academic work at an excellent grammar school, playing rugby, and leading an active social life. An unremarkable vomiting virus hit both William and James, his elder brother. James missed only a few days of school, whilst William complained of persistent headaches and nausea. And so began a cycle of multiple GP appointments, hospital visits, innumerable tests and multiple propositions as to the cause. William, my husband Paul and I were grilled on stress issues in his life and ours which left us bemused and frustrated. Few believed us, many criticised either our son or our parenting or both. ‘Was William under pressure?’, we were asked. ‘Had we thought carefully about his diet?’ ‘Was our marriage ok?’ and perhaps the most frequently asked ‘don’t you understand all teenagers find it hard to get up in the morning?’. Meanwhile, William remained white, with deep grey rings around his eyes, struggling to eat and his school attendance dropped radically. It was a year before we met an excellent paediatric neurologist, Dr Kinali, who recognised the condition and started appropriate drug treatment. However William’s headaches and nausea remained resistant to treatment and we were referred to Dr Prabhakar.
Little did we imagine that a year later Isabel, after several years of atypical migraines, would experience her migraines transforming into a chronic condition when she hit puberty. She ended up in the same clinic as her brother. Then a year later, after a particularly awful few months of rapid onset cycling of multiple migraines, their younger sister Katie joined them.
The past five years have been an extraordinarily painful journey for us all, but as Christians we believe that God is sustaining us and we thank Him for providing the resources and the expertise of the GOSH team. The clinic has helped the children learn to live with the condition rather than wait for it to be gone. Dr Prabhakar has gently and consistently said he cannot take their headaches away. This has been so very hard to hear but is helpful in adjusting to the ‘new norm’.
Awareness of chronic migraines is extremely limited. The condition sounds similar to acute migraine and indeed many people suffer from headaches and nausea from time to time, which has meant that the children and we as parents have received a huge amount of advice and criticism from well-meaning but ill-informed doctors, teachers, friends and family. The sense of isolation and loneliness has been overwhelming at times. In a world of huge medical advances – brain surgery, heart and lung transplants – we struggle with the reality that no one can take our children’s headaches away.
This is where the headache clinic at GOSH has proven such an oasis of understanding and wisdom – a multi-disciplinary team of professionals who ‘get it’ and work together to provide the best management of this chronic condition. Jo Mortimer the highly trained specialist nurse has an invaluable role. Her warm smiles of encouragement, her understanding and positive attitude have several times helped us through seasons of despair when we have battled for understanding in schools and often sadly the medical profession. I have lost count of the number of times I have walked through the doors of GOSH with tears streaming down my face at the sheer relief of being in a place of understanding and encouragement. The GOSH peer groups arranged by Hayley Bullock for the children have been invaluable. William and Katie both found meeting others with chronic headache conditions encouraging – they felt reassured that they were not ‘going mad’ and there were others going through similar experiences.
This condition has a massive impact on the whole family. We have seven children (five by birth, two we adopted before the chronic migraines began). It has been very painful for the two birth children who don’t have chronic migraines to watch their siblings’ lives change so drastically. Both have struggled with the guilt of living a ‘normal’ teenage life, with frustration at not being able to help.
Our five-year journey has been like a bereavement. We have lost the children and family life we had. We have passed through seasons of shock, denial, anger, depression, adjustment. Sometimes as a couple we have been in different stages at different times, and with different children, as well as trying to make normal life happen for the other four. It has been vital to find protected time to talk, listen, support, pray with and love each other through whichever season we have been in.
Life today is at best challenging, at worst a relentless cycle of heartbreak often unremitting for several months at a time. There are many late or broken nights – chronic migraines cause insomnia and disturb sleep patterns. Days divide into good headache and bad headache days for each child. The GOSH clinic has helped us think of chronic migraine as being where the migraine centre in the brain operates with a ‘dimmer switch’ rather than ‘on/off’ – its always on, just varies in intensity. A good day is one where the child can sit, eat and chat at the family table, despite nausea, and is able to get to school for however short a time, despite exhaustion and nagging headaches. The bad days are hard to describe, a mesh of cancelled arrangements, a child, or two or three in miserable distress, pain, overwhelming nausea, vomiting, a mother’s broken heart…many times I have wanted to run out of the house screaming ‘this isn’t ok, somebody needs to do something’. The GOSH clinic helps keep our sanity.
I have learned to be willing to set aside my own plans for the day to be with whichever children are struggling that day. Friends have become very used to me cancelling at the last minute. We have learnt not to look too much into the future but to trust that God will powerfully work in them to enable them to live fruitful, purposeful lives which are a blessing to others whatever the restrictions.
William has now left home and is enjoying a part-time apprenticeship living with family friends. He is learning well how to live life as an adult within the inevitable restrictions of the condition. Isabel attends mainstream school 50-60% of the time. Katie has attended a hospital school for two years. She has an excellent headteacher, but no peers her age and a constantly changing register of children so we are currently appealing for an educational health care plan assessment to seek more appropriate long-term schooling.
It is hugely reassuring for us living with a condition so poorly and widely misunderstood to be in a worldwide centre of excellence where research is part of the hospital culture and treatment and management strategies are evidence-based.
One of our adopted children has cystic fibrosis and diabetes and because of the tremendous advances in treatment of CF his life expectancy at eight now is far better than it would have been 50 years ago. In the same way we hope and pray that funding for research into chronic headaches at GOSH and other centres will improve the quality of life and prognosis for both children and adults with these debilitating conditions.
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.