Migraines: The devil within
Among the most typical life’s milliard disturbances, the major and the minor, is a headache. So common is it as a minor disturbance that most people, most of the time, will think nothing of it. We see it as representative of the everyday challenges that make life what it is. This reputation of headache as symbolic of the non-serious existential problems is what obscure the fact that headache can be and does indeed become a significant problem for many people.
So many. Millions worldwide suffer severe, recurring migraine headaches which sometimes are intractable to treatment and even disabling. One such person, I have known for years, starting from the beginning of my clinical training. Her story is one that captures the reality of severe migraines in a way few others can.
“I have had a painful and very lonely existence for the last two decades. Everything in life revolves around it. I am either under its spell or waiting for it to strike. I have tried everything—different doctors, different hospitals, different medicines. Then, after realizing it was all futile, I gave up. I settled down to a life dedicated entirely to bearing the pain of my migraine headaches. To put it in perspective, it is a life entirely submissive to the whims of the brutal devil within.
“There are battles which you do not fight. There are things you do not resist. There is the suffering which you do not try to eliminate. You simply bear it. If you fight, if you resist, you worsen the situation, and it destroys you. That is what I have learnt. That is the lesson from two decades worth of experience. It is the reason I gave up everything that life constitutes. The things that define a normal life became strange to me. What constituted life’s certainties disappeared. Facts of life became aspirational to me. The fact that you can wake up, plan your day and leave the house to go to work; the fact that you could even expect to wake up and go to work and work all day; that is not a fact in my life. That has not been a fact all those years I mentioned.
“Here is what has been in its place; the uncertainty of what the next minute will bring. How will I wake up, if I do wake up? When I wake up, what will follow? How soon after waking up will the attack come? How long will it last? Shall I survive it this time? If I survive that first one, how soon will the next come? Shall it at least let me fix some breakfast for my family? Can I see my children off to school today? Shall I be able to prepare a meal for them when they return? Shall I ever be there for their homework? Am I a mother at all? Am I a wife, really?
“That is what migraine is to me. For a long time, I did not even know what it was. I just lived with it; no lived under its power; wholly controlled by it. I live either in anticipation of it or under its incredibly punishing, murderous hold. Neither of those states is bearable.
When you anticipate something great, something powerful, time has a different quality to it. Your life is suspended; the present cannot be important or even real. When the subject of anticipation is a terrorizing force, the present moments are sheer trepidation. That’s what the intervals between attacks are.
“Then the warning signs begin. I begin to see stars and the vague semblance of the waves of a mirage moving in circular chaos and an unusual and terrifying rapidity. Gradually, everything becomes dark, followed by vomiting, the kind that is forceful, volcanic. Reality disappears as I descend into a hell of darkness and pain so extreme the only way to describe it is as indescribable. It is a state of utter and complete helplessness; I am in pain, incapable of moving, blind, with nothing but a faint perception of my existence. It lasts for several minutes, sometimes an hour. It affects only one side of the brain; one time the left, the next time the right, never both at the same time. In its wake, it is as if that entire half of the body doesn’t exist. If the migraine attack hit the left side of the head, after it’s over I can’t feel or move the left arm or leg or even feel my face; even the heart feels erratic and out of place. I cannot as much as turn my body or lift the bedsheet to cover myself. When all is over, I return to the anticipatory state, waiting, dreading, and knowing with certainty it is coming; sure as hell. The real hell. I am locked in a vicious cycle, spinning within an inescapable black hole.
“I remember the first attack very vividly. I was a teenager in high school. I used to sit at the front of the class. That fateful morning, the teacher passed in front of me wearing a rather strong perfume. My world suddenly went dark; I could not see anything. I started vomiting uncontrollably and had a headache whose intensity still chills me to date. They took me to some dispensary where, after the attack settled down, they started a discussion about pregnancy and demanded a test. I took the test. It was negative; I had insisted it would be. The discussion that followed might give you a migraine. I wouldn’t wish that on you.
For several years, that experience remained only as a terrifying memory which I hoped would never recur. For eight years, through different experiences and encounters and the strongest of smells, and even through my first pregnancy, I never got another attack. What is normal to others was normal to me; what are facts of life were facts of my life.
It recurred at some stage during my second pregnancy. That was when the normal dissolved, the facts disntegrated, my entire world fell into a black hole from which there would be no escape.
“To suffer without knowing what you are suffering from makes things worse. All I knew was what I experienced. No one else could understand. The pain and the vomiting and the anticipation are debilitating in themselves. But it is the loneliness of it that has been the worst. The fact that I didn’t know what it was, that others couldn’t understand what I was going through. And worst of all, the doctors. When you have a terrible chronic condition, you spare no efforts in looking for a solution. But you find the people from whom you expect to get at least some explanation become the ones who crush you. I found that trying to explain to a doctor how I was suffering could become worse than the migraine itself. Anyone with a disease looks up to doctors in a way comparable to how a helpless newborn looks up to its mother. You expect that with little explanation you’ll be understood. That even if you don’t know what you need to explain, the doctor has the knowledge and especially the patience to make sense of the situation for you. Well, that now seems somewhat naïve. My experience from all my hospital visits (there could be hundreds) was of people who couldn’t understand what I was saying and didn’t even have the humanity to empathize. You are made to feel like you are just a nuisance to them, that what you are suffering from is nothing. They prescribe painkillers for the pain I am insisting is refractory to them, and do so month after month, year after year. They insist that because brain MRI shows nothing abnormal, then what I am saying is nothing. They only deal with MRI and CT scans and things that are visible and verifiable, not my subjective nonsense.
“I had to leave them alone. I had to bear the problem alone.
“I began to look for information. I needed to understand. If I couldn’t be liberated from my hellish experience, I should at least free myself from the abyss of ignorance. One day a doctor on TV gave details uncannily similar to my condition. And he gave it a name: Migraine.
“So my tormentor had a name. What had been to me an unknown entity (even unknowable) could no longer be some mystical, omnipotent tyrant. The darkness had begun to fade. As I learnt more about it, I understood it was incurable, which made me feel justified in giving up on hospital visits. Then I got to know that there were triggers: bright light, strong smells, spicy foods — anything beyond the moderate. I started keeping off these things, and it went from multiple attacks per hour to a few per day, then just a few per week, later just a few per month and then a month, two, even three without a single attack. It was like getting into a new world. A world I had left behind long ago.
“But I couldn’t recover all the losses. I had lost all my youthful years. Youthful years spent locked in the house. I couldn’t travel because the very thought of an attack out there was chilling. If I couldn’t get out of the house, then I couldn’t work. I have never had a job—which is too much to ask when you hardly have a life. As I head to the fifties, I recognize it is too late. I can’t start over.
“Understanding it also brought more chilling discoveries. It dawned on me that this was a family problem and potentially with a heredity pattern. I remembered that throughout my childhood, and even afterward, my mother had often complained of headaches, sometimes so severe that she would be hospitalized. My son, the firstborn, started suffering even as a little infant. He would be crying and vomiting and holding or pointing to the head. All manner of hospital tests were done and all manner of drugs prescribed without respite. He would often have to leave school when severe attacks came. It is hard to watch your child suffer from something that no one can figure out what it is and imagining that he inherited it from you. No mother would want to be the cause of her child’s suffering. No mother could bear to watch her child suffer, again and again, knowing there is no help possible. It makes you suffer twice; from your pain and the pain of your child.
“This is a monster that has terrorized three generations of my family and the thought that it could pass on to the forth and on from there is even more painful than the pain itself. I have always wondered, will a solution ever be found, if not for us, for those after us.”
Mary N. lives in Nairobi with her husband and two children. Her migraine attacks are fewer. She has managed to eliminate or reduce exposure to triggers, including emotional extremes.
Migraine is a category of headaches which affect a significant proportion of the world population. In some people, these headaches are so intense and so frequent as to constitute a form of disability.
Some Facts on Migraines
This a condition characterized by recurring attacks of headaches which can be severe enough to be disabling. It is considered a neurovascular headache disorder which runs in families and affects mostly females: at least three quarters of the victims are females. It’s effect on the sufferer’s life is tremendous especially given that it usually starts at puberty and continues throughout the person’s productive life. From a medical perspective, it is a baffling condition that is refractory to nearly all available medicines. From a socioeconomic standpoint, it is no less than other forms of disability which blights a person’s social life and robs them of economic productivity.
How Migraines manifests
- Severe headache that throbbing in nature
- Headache lasts for hours to days
- Sensitivity to light, sounds and strong smells
- Pain on one side of the head and may extend to the neck