Catherine shared her experience of migraine to a hushed audience attending a pop up university session which Teva UK Limited sponsored and hosted on day one.
Dalbir Dhiraj, Medical Scientific Liaison Officer for Teva UK Limited, got the session underway with an introduction to migraine, describing it as a highly disabling and prevalent condition which is so much more than ‘just a headache’.
Dalbir said that current treatments for migraine have limitations, leaving patients with several unmet needs. Migraine not only affects the lives of patients, but also has an impact on their families, work and social lives.
“Migraine also creates a huge economic burden on society,” said Dalbir, “due to a loss of productivity and absenteeism.
“It also creates direct costs to the NHS, so further understanding of the disease, development of better therapies and increasing awareness of migraine and its disabling affects is required.”
Catherine then stepped up to the microphone to share her migraine journey with the audience.
She said: “My migraines started about 20 years ago (in my mid to late 20s), when I wanted to be enjoying a social life and looking for jobs. I remember it being really inconvenient.
“My experience is like a red hot poker in the back of my eye. A really bad burning sensation and 90% of it is down the right hand side of my face. It’s extremely painful. In fact I would rather give birth than suffer one of my full blown migraines that last a couple of days.”
She added: “Back then the only medication was paracetamol and codeine, but when I took these it made it worse. It used to numb the pain a bit, but then it would come back worse. I also fell into medication over use.
“I saw my GP lots of time over the years and it resulted in me trying lots of different preventers, or relievers as I tend to call them.”
Catherine said: “After 20 years I was fortunate to visit a neurologist who specialised in migraine so that I could get some understanding and try and manage my life with migraine. I thought I’m not going to get rid of the migraines so I might as well try and manage my life with it.
“The neurologist was a game-changer because he was a specialist who understood migraine. He said everything I was experiencing was normal. He said migraine is different for everyone and there are different treatments depending on how long your migraine lasts.
“We discussed the best medicines that suited me so that I could manage migraine better. It means that now I tend to not spend time off work. Instead I will take a triptan to get through my working day and then go to bed when I get home, so it’s my social life and family life that suffers more than anything.”
She added: "Migraine affects every part of your life really and you just have to try and find a way to manage it. You have to carry on. You can’t stop living. It’s nothing in isolation and sufferers have a threshold, so if you’re tired, stressed, haven’t eaten and your hormones are off, then those things will probably tip you over the edge.
“But nobody wants to stop living so you have to just manage it the best you can really and hope all those factors don’t pool in together.”
If you break your leg, you can sit down and watch the TV or do something that takes your mind away from the pain. With a migraine, that pain is in your mind, you can’t avoid it. There is no escape, apart from just lying there and waiting it out and hoping it’s a 10-hour one and not a 72-hour one.”
Siobhan Jones, a Headache Specialist Nurse at Salford Royal Hospital, ended the session with a further presentation about migraine and her experiences of dealing with migraine patients.
She explained the symptoms of migraine and the barriers to efficient care and efficacy. She also talked about the acute treatments that are available and the need to ‘treat early, whilst mild’.
Siobhan echoed Catherine and said that as well as treating the headache symptoms with medication, it’s also important to think about aspects of lifestyle that may contribute to headache and she followed this up with a series of steps for self-management.
She said more than anything, patients came to her with concerns about coping with the pain, but also restrictions on daily and working life and the impact migraine has on family and social life.
She said: “Despite the unmistakable growing need for collaborative headache management, it is recognised that many practices do not have the resources to manage patients.
“Ultimately patients are often denied optimum treatments and attention which means an ineffective use of clinical resources and time, so typically the condition, or management of the headache worsens.
“A shared care package with clinician and patient promoting ‘patient self-empowerment’ and education should be encouraged so that the effect of the condition is less of a burden on the individual’s life.”