Gripped by a blinding pain pulsing through her head and unable to move the left side of her face, Jenny Balls feared she was having a stroke.
She wasn’t being overly dramatic: seeing how seriously unwell she looked Jenny’s friends – all student nurses like her – feared the exact same thing.
‘I literally couldn’t move, and my friends thought I’d had a stroke,’ says Jenny. ‘They called an ambulance and I went to hospital.’
Having lost her mum only five years before Jenny was ‘terrified’ that she, too, might not survive.
But by the time she reached A&E, the paralysis down her left side had worn off.
‘Doctors basically told me I was fine and it was just anxiety and a headache,’ she says.
Yet four months later, the same thing happened. Then the same severe headache and the inability to move the left side of her face hit her twice more in the space of four months.
‘Doctors told me I was stressed. Some inferred I was trying to get out of doing university homework,’ she says.
Jenny Balls was terrified when she began to suffer from a severe headache and the inability to move the left side of her face
Certainly, Jenny was under pressure – aged just 21 at the time, she had lost both her parents by the time she’d turned 16 and didn’t have the support many others her age had.
Her nursing course was intense, and hospital placements reminded her of her parents’ deaths – but she knew the agony and paralysis she was experiencing was more than a reaction to all that.
Finally in her early 20s she saw a doctor who suggested it ‘might’ be migraine, and gave her amitriptyline, an antidepressant thought to also prevent migraine attacks.
‘But I could barely function,’ she says. ‘I was exhausted and felt sedated.’
It would take decades before Jenny would get the treatment she needed to control her symptoms.
For not only was Jenny experiencing more than ‘just’ a headache, she was also suffering from much more than ‘just’ your average migraine.
It wasn’t until she was 28 that she was finally diagnosed with hemiplegic migraine, which has symptoms that can be confused for a stroke.
But even with the right diagnosis, it would take many years more before she was given the right treatment to bring her symptoms under control.
Around ten million people in the UK experience some type of migraine, which is three times more common in women
Without that treatment, ‘my life was blighted with migraines once every few weeks that left me bedbound, vomiting, unable to work or go out’, recalls the advanced nurse practitioner from Huddersfield, now 44.
Around ten million people in the UK experience some type of migraine – most of them women; migraine is three times more common in women, possibly due to hormonal fluctuations.
Migraine can vary widely in severity, symptoms and frequency. Some attacks last a few hours, others days.
Some people with migraine do not experience head pain but have other migraine symptoms, such as nausea, sensitivity to light, sound or smell, vestibular symptoms such as dizziness or sensation of movement (vertigo), or vision issues known as aura which include seeing flashing zigzag lines.
‘Researchers think migraine is the result of abnormal brain activity affecting nerve signals, chemicals and blood vessels in the brain,’ says Peter Goadsby, a professor of neurology at King’s College London and trustee of The Migraine Trust. ‘We don’t know exactly what causes this brain activity, although for many people there is a link to their genes.’
The most common type is ‘migraine without aura’ – typically a throbbing, intensely painful headache, followed by visual disturbances such as blind spots or flashing lights.
Less common is vestibular migraine (with vertigo and balance problems) and hemiplegic migraine, which can involve one-sided weakness in the body, and seem like a stroke.
Professor Goadsby explains that normally, when a nerve impulse passes from one cell to another, it opens a ‘channel’ which acts like a ‘gate’, releasing chemical messengers that contact the neighbouring cells and tell them how to respond. But in those who suffer from hemiplegic migraine, these channels may not work properly. This can affect the release of chemical messengers, such as serotonin (which plays a part in for example how the body processes pain), resulting in these symptoms.
‘Researchers think migraine is the result of abnormal brain activity affecting nerve signals, chemicals and blood vessels in the brain,’ says Professor Peter Goadsby
While stress does not cause hemiplegic or any other type of migraine, he says ‘it can be a trigger for those who live with the condition’.
Broadly, treatment can be divided into two categories: acute, to be taken at the beginning of an attacks, such as drugs called triptans which stop the release of certain proteins from the nerves known to be involved in pain; or preventative medications – these include beta blockers, normally used to treat blood pressure as they slow heart rate but they can prevent migraine by, for example, acting on serotonin receptors.
Beta blockers often need to be taken daily in order to prevent attacks or at least reduce their frequency and severity.
But ‘there are many different types of treatment for migraine, and it can be a lengthy process to find what is most suitable for an individual’, says Professor Goadsby.
‘Most people with migraine should be able to be cared for by their GP, not everyone needs to see a specialist, although some with more complex and difficult to manage migraine will need expert input.
‘But if you have suspected hemiplegic migraine, specialist advice is recommended,’ he adds. With these type of migraine ‘triptans, for example, are best avoided during the aura phase’.
After graduating and meeting her husband John, a mechanical engineer, Jenny came off the amitriptyline to avoid its sedating effect – and strangely had no attacks for around three years.
But in her mid-20s Jenny moved with John for work – and got a job in a prison.
In her mid-20s, Jenny began a stressful job working in a prison – at which point the migraines came back
Here, she was under a lot of stress and ‘suddenly the migraines came back with a vengeance,’ she says.
‘I started having migraine with aura and could feel it would happen minutes before. Within half an hour I’d have weakness down my left side, then a huge headache. If I was at work, I’d have to leave early as I couldn’t drive once the migraine hit.’
Aged 28, she saw a neurologist. ‘He listened to my symptoms and told me I had hemiplegic migraines, a rare type that causes muscle paralysis on one side and also causes impaired vision, speech or sensation,’ she says. ‘Often it is mistaken for stroke.’
Jenny was prescribed the beta blocker atenolol. This was effective at stopping the migraines, and for the next three years Jenny was able to enjoy life.
She says: ‘John and I would go on city breaks, visit friends, we enjoyed hiking and walking in the countryside going to concerts and seeing comedians.’
Then when she was 31, the migraines suddenly returned.
She recalls: ‘Now they were even worse. I’d get an aura, then a sensation the migraine was coming, then within 30 minutes it would hit.
‘I’d have to hurry home and get in bed where I’d have to stay for hours, feeling sick, being sick and hitting the side of my head with my fist – that was the only relief.
‘The head pain was a burning hot throbbing pain just to one side behind the temple and eye. It was blinding, it made me cry. I felt I wanted to drill a hole in my head.’
These attacks would last up to 12 hours.
‘After that, my consultant tried me on triptans – but they never worked,’ she says. ‘I’d have to just ride it out each time, in agony, painkillers even strong prescribed ones, didn’t even touch it.’
Aged 30, with the atenolol no longer working and painkillers a dead-end, Jenny was feeling ever more desperate.
Although she went back to working in nursing, in a GP surgery as an advanced practitioner, she found the migraines affected her work.
‘It was awful,’ says Jenny. ‘Despite being in a clinical setting where people were supportive you still feel terrible cancelling appointments and letting patients down.’
She was prescribed the beta blocker propranolol, which works slightly differently from atenolol – and it made all the difference.
‘I have been on propranolol since then,’ she says. ‘I also learnt to manage stress, not to drink tea or coffee and avoid stressful triggers.’
Beta blockers were discovered to be a treatment for migraine by chance, says Professor Goadsby as it was noticed that when treating patients with high blood pressure, it prevented their migraines too.
However he warns there are potential side-effects, ‘such as tiredness and weight gain, and they can be dangerous when used in patients who also have asthma’. This is because the drugs can tighten the airways.
Jenny does have some side-effects including dizziness and feeling lightheaded so she takes the drug at bedtime to minimise this impact, but she’s grateful to have her quality of life restored – ‘I now only get migraine rarely, and even when I do get one, I no longer get the facial paralysis’, she says. ‘It’s been such a vast improvement.’
