Migraine is a neurological disorder and it differs from garden-variety headaches. People are likely to suffer from migraine if they have had at least five headache attacks in their lives, each lasting between four and 72 hours, and if the pain fulfils two out of these four criteria: It throbs or pulsates; it is on one side of the head; it is moderate to severe; it gets severe with activity. Also, these attacks cause either nausea or sensitivity to light and sound. Common migraine triggers include stress, too much or too little sleep, caffeine, alcohol, weather changes, certain foods, dehydration, light and particular smells.
Headache disorders, including migraine, consistently rank among the leading causes of disability worldwide, especially for those ages 15-49. That’s a big deal. Yet people often don’t think of migraine as a significant disease. It’s often minimized and ignored. Migraine is incredibly burdensome. But less than half of people with the disease talk to their doctors about it. And only 5% of people with chronic migraine have gotten the proper diagnosis and preventive care. I get migraine headaches which are excruciating in pain. Far too many people with migraine suffer in silence. My maternal grandmother, mother and I suffer from chronic migraine, which is defined as having headaches on 15 or more days per month for more than three months, and when at least eight of those headaches have migraine-like features. In Pakistan, although I do not have the statistics, why is this devastating condition so woefully understudied? “It’s a woman’s disease,” said one neurologist. In other words, he said, sexism almost most certainly plays a role in apathy toward the condition. If you think you might have migraine, see your primary care practitioner. There is a better understanding of migraine within the primary care community in recent years and more knowledge about the newer treatments. But if you’re not getting the help you need, you might want to see a headache specialist or a neurologist. People with migraine are at increased risk of other disorders, including heart disease, stroke, epilepsy, anxiety and depression. If you don’t suffer from migraine headaches, you probably know at least one person who does. Nearly 40 million people get them, 28 million of them women and girls, making migraine the most disabling condition in the world, after low back pain. Several studies have found that migraine had become more frequent during the Covid-19 pandemic.
It’s okay to say you’re not okay to your loved ones, your colleagues, and, very importantly, your healthcare provider.
Stigma might be partly to blame. One reason is that your symptoms are mostly hidden. People don’t see a cast on your arm. You’re not using a crutch; you’re not bleeding. Another reason is that, while migraine is an invisible illness, it affects people around you. You may need to withdraw to a dark room, take your medication, and sleep for a while. And people often confuse migraine with other kinds of headaches. They may wonder why you can’t just take a pill from the drugstore and get over it. But it’s more than “just a headache.” You may be extremely sensitive to light. That can make it hard to go to the movies or drive when it’s bright out. You may need to skip daytime visits to the beach or park. Fluorescent overhead lights, like the ones common in offices, can also be painful. Some smells, like your colleague’s perfume, may be overwhelming.
As someone living with chronic migraine, every day is different. The people closest to me know and understand the unpredictable nature of this disease. If I make plans, it’s always with the caveat that it depends on how I feel. I try not to overpromise. I still get FOMO or fear of missing out. But I know my limitations and how my body will feel if I do too much. My eyes go out of focus, nearly always the left one, with dazzling white lights. This lasts about half an hour before my eyes clear. Afterwards, I have this terrible headache that lasts about two days. The pain begins at the front and travels all over my head, making the back of my head feel very heavy. I have to stay as still as I can otherwise it gets worse. I can’t sit in a room with the lights or the TV. I feel very sick. It is really off-putting when people offer unsolicited advice to people with migraines like myself such as,” Try to reduce the stress in your life”; “You look good, not sick at all”, “It can’t be that bad, I also have a headache sometimes, ” Get some fresh air and do more exercise” or ” Find a hobby, distract yourself”. You truly do not know what I am going through. I can sit in a room and talk to you about budgets; you would never know the suffering behind my mask. We need people to understand the depth and how hard it is to navigate life with this. Once people understand the intensity, and how it affects someone, I believe support and compassion will follow. I want people to understand that I’m going to get it done, but sometimes it may take me longer than usual. The reason most of my colleagues don’t know that I have migraine is that I’m afraid that they will think I’m making an excuse. But people need to know it is not an excuse; it is a real disabling disease. And I want to be able to tell people what is going on, not so that they feel pity or so that they move a meeting, but just so they understand why I may not seem like my usual self. And really, all I need is that understanding.
Unfortunately, there’s no such thing as a cure for migraine headaches. However, medications and lifestyle changes can help improve a patient’s quality of life. Researchers are still trying to figure out why some people get migraines and others don’t. It’s important to know you have a disease that’s not your fault. Health professionals can also normalize your experience and let you know you’re not alone. Minimizing what we are experiencing and letting that hold us back from reaching out for the support and care we need. It’s okay to say you’re not okay to your loved ones, your colleagues, and, very importantly, your healthcare provider. There’s no cure for this genetic neurologic disease, but there are things I do to manage my day-to-day life. Based on your symptoms and their frequency, your doctor may recommend a preventive migraine treatment to stop the headaches from starting. Such medicines include antidepressants, blood pressure medications and epilepsy drugs. The problem with these drugs is that often “they have nasty side effects,” so they are not well tolerated or recommended. I briefly took blood pressure pills to control my migraines, but every time I exercised, I felt lightheaded and fainted. I hope that by sharing my experience, I inspire someone to be an active advocate for themselves or others. Time is too precious to wait. I can’t change the way my life is from day to day. However, I try to use my experiences with chronic migraine to help others. I’m now the migraine advocacy liaison.
The writer is an ex-banker and a freelance columnist. She can be reached at tbjs.cancer. [email protected]