Once in a while, we all get a headache. And 70% of the time, it’s caused by stress and tension. Most people will pop a painkiller and hope the pain goes away quickly. But for migraine sufferers, the throbbing pain – usually on one side of the head, but often, on both sides – can be debilitating.
Migraine is a chronic neurological disease that causes recurrent attacks of head pain that is often associated with nausea and vomiting, as well as sensitivity to light and sound. For relief, many seek solitude in quiet, darkened rooms, but that doesn’t necessarily mean the pain will go away.
Left untreated, the pain can last anywhere from four to 72 hours and reduces the patient to a low functioning level. It’s not clear what causes migraines, but according to Mayo Clinic, genetics and environmental factors appear to play a role.
Changes in the brainstem and its interactions with the trigeminal nerve – a major pain pathway – might be involved, along with imbalances in brain chemicals, including in the neurotransmitter serotonin, which helps regulate pain in the nervous system.
Women are also more prone to migraine attacks, starting from their teenage years up to menopause (and sometimes after), possibly due to hormonal changes. For Norhakimi Khaiessa Ahmad, 45, her nightmare started after suffering from menorrhagia (heavy menstrual bleeding).
One time, she was given intravenous therapy for eight hours, combined with contraceptive injections and other treatment to stop the bleeding. Ten days later, she experienced a sharp pain on the right side of her head while she was chairing a meeting at work. She collapsed and was rushed to the hospital in an ambulance.
“The doctor in the emergency department treated the pain as a severe headache, gave me medication and sent me home,” shares the mother of four. “The next day, the pain struck again and I went to see a neurologist. We did all kinds of scans and the results came back normal. That marked the beginning my migraine episodes.”
Her headaches would occur in the morning, and by night, she would recover. She also developed photophobia, a condition that causes sensitivity to light, including sunlight, fluorescent light and incandescent light.
Norhakimi says, “Later, the neurologist and gynaecologist ruled out contraceptive injections as being the cause of my migraine. I still don’t know what started it. Now, when I go out in the sun, it triggers my migraine, so I have to wear sunglasses 24/7.”
It has been one long journey of pain and painkillers for Norhakimi, who eventually quit her job after 20 years in the human resources industry as she could no longer stand criticisms from her colleagues.
“The medications make me drowsy, and in the office, I had no avenue to rest or take a nap. A headache is like a toothache – you don’t know how I’m feeling, but the pain is there. My two best friends are my sunglasses and (migraine preventive medication) propranolol 20mg – I can’t live without them.
“When people see me with sunglasses indoors, they give me ‘that look’. This often happens when I go to the bank. So I’ve begun using my standard statement by saying ‘I’m sorry, I can’t take off my sunglasses as it triggers my migraine’. Then they loosen up and smile.
“Life hasn’t been easy, but it has to go on,” says Norhakimi, who is presently self-employed.
It’s a disability
Migraine is an invisible disease – people who do not suffer from it often do not understand how crippling it can be. It is not a mere headache. For instance, sometimes, the pain intensity associated with migraine attacks can be high enough to cross the minimum threshold for disability.
Globally, migraine is the leading cause of disability in the below-50 age group, followed by lower back pain and diabetes. One in seven persons is afflicted with migraine (14.7%), while 70% of the population worldwide suffers from tension-type headaches.
The World Health Organisation (WHO) acknowledges that headache has been underestimated, under-recognised and undertreated throughout the world.
In the 2013 Global Burden of Disease Study, migraine on its own was found to be the sixth highest cause worldwide, of years lost due to disability. Headache disorders collectively were third highest.
Repeated headache attacks – and often the constant fear of the next one – damage family life, social life and employment. The long-term effort of coping with a chronic headache disorder may also predispose the individual to other illnesses.
Anxiety and depression are significantly more common in people with migraine than in healthy individuals. The prevalence of migraine in Malaysia is not known, but based on a study conducted in 1996, 9% of Malaysians could be suffering from the ailment.
“When we think of disability, we often assume it is wheelchair-based. But disability does not necessarily have to be physical,” says neurologist and headache specialist Dr Julia Shahnaz Merican.
“Migraine is considered a disabling condition when you suffer from headaches for half a month. With a migraine, your activities are limited and bosses often flag you if you get one too many medical chits. So far, I’ve only managed to get one person to obtain disability status due to migraine
It’s not easy to diagnose migraine and studies show that over two-thirds of migraine sufferers have either not consulted a neurologist for their condition or have stopped doing so.
“They would rather turn to painkillers, which may lead to medication overuse in headaches. There is a mixed bag of symptoms that occur before a migraine is triggered and the pain level can be anywhere from moderate to severe. It’s a complex disorder, and most of the time, there is a family history.
“I’ve had one patient who went for a holiday, ate something and the attacks started. Patients are often stigmatised because others underestimate their pain. Migraine sufferers frequently complain about feeling judged or misunderstood.
“It is not surprising, therefore, that migraine is highly comorbid (occurs together) with mental health disorders such as depression. As such, we urge patients not to suffer in silence, but to seek help from your doctors,” she says.
When a patient is diagnosed with migraine, Dr Julia’s standard procedure is to tell him or her: “You have a brain that is hypersensitive.”
She addds, “I tell them to keep a diary and note down everything for at least two months, so that we can tell whether the migraines are chronic (15 or more headache days per month) or episodal (up to 14 headache days per month).
“If you don’t fight it, it will keep coming back, so we need to empower and educate patients to know what to do when an attack occurs. If they have more than eight headaches in a month, I convince them to take prophylaxis (preventive treatment), although these are not intended to treat normal headaches.
“I tell them to try it for a month to see if there are any changes. There is no cure, but if the drug can make you better by 50%, then it is good. But many patients don’t stick to it because of the side effects such as weight gain and mood swings.”
New treatment available
But now, there is a new, first-of-its-kind treatment that offers much-needed relief for migraine sufferers.
Administered as a once-monthly subcutaneous (under the skin) injection, Pasurta (also known by its generic name, erenumab) is currently indicated for the treatment of migraine in adults who have experienced four or more migraine days a month.
The treatment targets the calcitonin gene-related peptide (CGRP) receptor – a neurotransmitter that plays a critical role in triggering migraine.
Dr Julia, who was at the recent launch of the drug, highlighted an interim analysis from a phase II open-label extension study of Pasurta, which found that at week 12, 30% of patients on the drug had a 50% or more reduction in ave-rage monthly migraine days.
At week 64 of the treatment, 65% were only experiencing half or less of their usual monthly migraine days; 42% were only experiencing a quarter or less; and over a quarter of patients (26%) had no more migraines.
“You should be able to see a difference within one week of initiation (of the injection). However, Pasurta only works for migraine, not other headaches,” says Dr Julia.
The drug, which comes in a pre-packed syringe, is administered via the tummy or thighs – just like an insulin jab. It is prescribed by neurologists and is currently available in private hospitals only.
To date, some 200,000 migraine sufferers worldwide are on this treatment, which is notable as the drug was only launched in the United States in May 2018. Migraine sufferers are urged to be disciplined to minimise the attacks: get proper sleep, reduce stress, exercise, and cut back on dairy and coffee.
“There is a low discontinuation rate with Pasurta. However, if patients achieve headache freedom, it is their choice to stop treatment,” says Dr Julia.