Richa Singh, a 28-year-old writer from Delhi, has a long list of things she would like to avoid. She manages to stay away from some of these, like direct sunlight and having irregular meals, by being cautious and disciplined. But she cannot get away from others, like sudden loud noises and her monthly period.

Smoke, pollution and inadequate sleep are other things on her list that can set off her severe headaches that incapacitate her for anything from a few hours to few days.

Diagnosed with migraine when she was eight, Singh has largely learnt to navigate the obstacle course of triggers that most patients with the chronic illness have to contend with, but has also resigned to the fact that a headache is always just around the corner.

“At least once or twice a month I get a severe headache that leaves me almost bed-ridden,” said Singh. “I can’t function, I can’t go to work. This lasts for two or three days. But when I was a child, the attacks were more frequent. I would have to miss school for weeks.”

A migraine is a disorder characterised by periodic, pulsating and typically one-sided headaches that last for a few hours at minimum and can go on for days. The condition, according to the World Health Organisation, is life-long, with recurring attacks that can range from moderate to severely painful, are temporarily disabling and often accompanied by other symptoms such as nausea or vomiting.

Various studies have pegged the global prevalence of migraine at between 14% and 18%. Despite it being an extremely common disorder, migraine is often misdiagnosed, mistaken for sinus or weakening eyes, said doctors, leaving millions to suffer a pain whose intensity few others can grasp or sympathise with. The signs that could help tell a migraine attack apart from another kind of headache, are that it has a trigger – there is a cause and an effect – it can be disabling, rendering the patient incapable of functioning, and is recurrent.

In some cases, a migraine attack is preceded by neurological symptoms called auras. These are usually visual disturbances, such as blind spots, zig zag lines or temporary blindness, but could also be neurological or physical, like numbness or tingling sensations, or weakness on one side of the body. Between 10% and 15% of patients with migraine experience auras.

“Migraine is a genetically-inherited disorder. If you go on exposing yourself to triggers and provoke the tendency, you get more and more of headache,” said Dr K Ravishankar, a specialist in headache medicine who runs a dedicated headache and migraine clinic at Jaslok and Lilavati Hospitals in Mumbai. “Add to this the fact that you’re living in an environment where there are so many triggering factors. In our Indian environment, you have high heat levels, traffic jams, people fasting, people skipping breakfast. So, daily you are exposed to these triggers, and it’s a time bomb, and then you get into a chronic space, and then you definitely need to be attended to.”

Not ‘just’ a headache

Migraine is a lifelong condition and is also disabling, frequently striking people during their most productive years between the ages of 20 and 40, after which the symptoms generally, but not always reduce. It is three times more common in women for hormonal reasons, said doctors.

According to the latest Global Burden of Disease study, migraine is the sixth-most disabling illness in the world, based on number of years lost to disability. Despite this, it is not given the kind of attention that other chronic illnesses get.

“It is an invisible misery where nothing is measurable, nothing is visible, so therefore people do not believe that these patients are suffering so much,” said Ravishankar.

As a result, patients often have a hard time explaining to their friends and family why a headache renders them incapable of working or socialising.

“The words ‘I have a headache’ just don’t justify what all is happening,” said 28-year-old Akanksha Kapoor, who works in the development space and was diagnosed with migraine in her early teens. “It can lead to black outs, you can’t deal with sound and light. You just need people to shut up, turn off the lights and leave you alone – and others cannot understand why you’re doing this for just a headache.”

Ragini Gupta, 26, a cyber security professional from Delhi, has been having migraine headaches for more than 16 years now. “I feel like someone is pulling my nerves from inside and something is happening inside my head,” she said. “I can’t bear light, sound anything. People think of headache as a very normal thing that you can just pop a pill and carry on with your day despite. But normal painkillers don’t work in a severe attack.”

Gupta said she once had an attack in office and had to be taken to the hospital. This helped her colleagues and employers understand the severity of her condition.

However, Pune resident Vandana (name changed) did not get the same understanding from her family. Married with two children by the time her migraine was diagnosed, she could not take prolonged rest even when her attacks were severe. “I had accompanied her to the doctor once and he advised her to avoid stress and just relax at the time she has a headache,” said her sister Archana, 55. “Now this is all fine to say – but in reality it never happens.” Archana remembers Vandana’s husband insisting that his wife get things about the house done on time.

Some people with migraine also suffer from neurological disturbances during an attack, known as "aura", which could be some sort of visual distortion such as blind spots, zig zag lines (pictured here), coloured spots or other symptoms such as numbness or dizziness. [Photo: Loethlin/via Wikimedia Commmons]
Some people with migraine also suffer from neurological disturbances during an attack, known as "aura", which could be some sort of visual distortion such as blind spots, zig zag lines (pictured here), coloured spots or other symptoms such as numbness or dizziness. [Photo: Loethlin/via Wikimedia Commmons]

Patients are diagnosed with chronic migraine when they have suffered more than 15 days of headache over three months. Such severe and prolonged periods of headache can have an even more drastic impact on patients’ lifestyles, even forcing them to alter their career paths. “People have come back from the Gulf because they can’t live there in the hot weather conditions,” Ravishankar said. “Patients come and tell us this is the last point and after this we are just going to commit suicide if we don’t get better.”

Singh’s migraine attacks at their worst have included fainting spells, blackouts and momentary loss of vision. This makes it difficult for her to commit to a routine where she has to turn up to work everyday.“It’s difficult to turn up physically anywhere everyday – whether it’s school, a job or whatever.”

Dr Shirish Hastak, a consultant neurologist and group director at Wockhardt, said chronic migraine could also affect the mental health of the patient. “Headaches alters your lifestyle, changes your family’s behaviour towards you. So, depression is a commonly seen among patients.”

Finding a way

Living with migraine means understanding one’s triggers, pre-empting a headache and accepting that this is an illness that cannot be cured but can be controlled.

“Patients first need to understand what we are dealing with,” said Ravishankar. “Just like blood pressure and diabetes, migraine cannot be cured and can only be controlled, but 80% control is as good as a cure that does not exist as of today.”

Patients often tend to stop taking the prescribed medicines if they feel their headaches are under control and this is a big problem, said Hastak. “The [migraine] attack itself can be treated using what we call NSAID, or non-steroidal anti-inflammatory drugs – paracetamol and the like, simple pain killers, or more specific drugs like Triptans ,” he said. “But if you’re getting more than four to six episodes a month, you will need preventive medicine or prophylaxis, which could go on for six months, a year. And you really have to tell the patient that they cannot stop this medication on their own. Prevention is better than cure but it also longer than cure.”

Hastak advises his patients to maintain a headache diary noting down the severity, frequency and duration of the headache. This, he said, helps identify triggers, something that can go a long away in bringing the frequency and severity of attacks under control.

Nidhi Sachdev, 54, who runs a clothing boutique, managed to identify and control one of her triggers.

“For 15 years, starting from my mid-30s, it was hell,” said Sachdev. “I felt that maybe this [migraine] is my karma, I may have harmed someone in my last life. I wouldn’t even wish this illness upon my enemy.”

She then realised that her affinity for mint was exacerbating her headaches. Aspartame, a sweetener often used in mint, is a common trigger. “Once I stopped having mint, my headaches came down to a large extent,” she said, adding that she does still have the occasional mint chocolate once in a while.

For the last three or four years, Sachdev said, her headaches have been manageable. “But I have come to the conclusion that this is not curable,” she said. “Lot of migraine sufferers claim they have now become pain free, through yoga or some other practice. But I want to meet them and ask: are you really pain free?”

This is the third part of a series on forms of pain that are not understood well or are ignored or dismissed as minor health issues. Read the series here.