Carlos Santillana Castillos

So Perfect, So Vulnerable

Carlos Santillana Castillos knows his migraines inside out. His physical symptoms include visual disturbances and severe headaches. But the brain is an enigma. During an attack, he also experiences something that resists classification.

Carlos Santillana Castillos

A suburb of Mexico City, Mexico

42 years old. 

Family

Carlos lives with his wife Katia and their two young boys.

 

Diagnosis

Soon after his first attack, while still a teenager, Carlos received a diagnosis of migraine with aura. In his case, it means that he experiences visual disturbances for about a half hour before the headache commences. The headache is severe for half a day, after which the pain subsides to a moderate level and disappears after a couple of days. There are a variety of triggers that can provoke a migraine. Carlos has two: stress and bright lights.

Employment

Carlos is a certified public accountant and has an MBA. He is also licensed as a private pilot. He’s worked for a number of pharmaceutical companies and is currently Access & Business Support Director for Lundbeck Mexico.


Interests

Carlos usually runs one or two marathons a year, most recently the 2019 Boston Marathon. Although the COVID-19 pandemic has resulted in widespread cancellations, he continues to train almost every day.

A dot?

 

Suddenly, Carlos sees a dot of light in the visual field of his left eye. It shines brightly, but not so much that it hurts. He closes his eyes and it’s still there. Then a shower of streaking light. When he opens his eyes, he can no longer see out of the left one.

 

He thinks: I’m going blind.

 

Carlos has come to Mexico City from his hometown in the Valley of Puebla. A 17-year-old boy on the big city subway, petrified stiff. And he’s still there when the headache arrives. The pain is alien and it throbs. He doesn’t ask anyone for help, because he can’t find words to describe what’s happening to him.

 

He thinks: My eye is broken.

If He Could Trade

Since that day on the subway, Carlos has seen the glowing dot a couple of times a month. The dot is a sign. Carlos suffers from a form of migraine in which visual disturbances – known collectively as the aura – precede the headache. Sometimes the dot might skip a month between visits, other times it comes more often. But when it does appear, he knows, he should cancel meetings and social gatherings for the next 48 hours. He shouldn’t go running, he should avoid bright lights. The laughter and clamour of his children will make him flinch.

 

He can never predict when it’ll happen. Recently, the dot showed up while he was shopping at a local mall with his two small boys.

 

Or the attack can occur at work. He still remembers one project that he’d worked on enthusiastically for months. And he remembers how he felt when the glowing dot appeared right before he was about to present it for the first time. But you’d have to know him well, he says, to notice when he’s not feeling good. In Mexico – or anywhere in Latin America, for that matter – a headache is not something you’re supposed to pay attention to, he explains, sweeping all headaches away with a dismissive gesture. His instinct is to hide his condition. Pain is … private.

 

It’s also profound, intense.


Yet there’s another aspect of his migraine that makes him suffer more. If he were able to exchange this aspect for more physical pain, he would say yes to the trade.

Maybe It Helps

Migraine means physical pain. But it means more than that. It confronts patients with its unpredictability and their lack of control. Many sufferers can attest to how their dread of the next episode has taken over their lives.

 

Carlos starts almost every day with a training run through empty morning streets. He trains himself not to tense up when it starts to hurt. He trains himself to breathe deeply throughout. Carlos is preparing himself to accept the physical pain involved in running marathons. He’s betting that migraine pain and marathon pain will remain separate. But that isn’t up to him. Once he ran a qualifying race in Las Vegas with a migraine, and it’s a marathon he won’t forget any time soon. While physical pain doesn’t dismay him, the blindness that comes with his aura does. That’s what he wishes he could trade away.

Migraine means physical pain. But more than that, it confronts patients with their lack of control.

Visual disturbances associated with migraine are a neurological symptom that lies outside human control. Carlos is completely unable to affect the blindness that strikes his one eye in any way. Experience tells him that it’ll pass after about 10 minutes.


His body is not so sure. 


And even if it only lasts 10 minutes, in those minutes he’s vulnerable. What if the boys had got lost that day in the mall? They’re so high-spirited – he can’t let them out of his sight for a minute. What if they had run out in front of a car? So he has developed a little ritual that helps him deal with his aura.

 

The ritual is inspired by an event in his early childhood, he explains. An event that still stands out in his memory. He had had a major operation, and when he emerged from the anaesthesia, he was feeling wretched. A doctor moistened a piece of gauze with isopropyl alcohol and handed it to him. “Breathe in, it’ll help!” Now as an adult, Carlos mimics the surgeon’s movements when the bright dot appears: he takes some cotton wool, moistens it with alcohol, holds it to his nose.

 

The acrid smell shortens the half hour of disturbed vision – maybe.

 

Carlos shrugs his shoulders with a half smile. Or maybe it’s just the fact of doing something that helps.

 

The Doors of Perception

Years ago, migraines took Carlos by surprise. Today he knows the condition intimately, and when he talks about it, it comes across as a sort of a force. It wants to get in touch with him. And it brings him a gift.

 

The neurological activity of a brain during a migraine hasn’t been fully mapped yet. But in certain rare instances, a patient may experience euphoric elation during the course of an attack. It’s been hypothesized that this shift in perception is due to a sudden surge of dopamine in the brain. Carlos describes his own experience of the phenomenon in this way: during the transition from aura to headache, it feels as though the migraine flings open the doors of his perception. Hearing, sight, smell – all his senses dilate. The filter between him and his surroundings is gone, and he feels impressions from other people cascading directly into him.

Are they sad, happy, scared? He can’t tell. The experience lasts about five minutes – and those minutes are bliss. He summarizes these intense sensations in a single conclusion, a single conviction:


“We are all so perfect, and so vulnerable.”


The euphoria is a recurring event that has left a mark on him. It’s shaped his view of human nature, as well as his relationship to his condition. Carlos explains that his migraine reminds him that he’s created of flesh and blood. He’s not invulnerable. Nobody, regardless of success or status, is above anybody else. We are all vulnerable.


Migraine reminds him that his life – and everyone’s life – means much more than simply getting through the day’s tasks. A migraine attack interrupts his daily existence, and at the same time it reconnects him with his purpose – with the compass he needs to steer his life.


And migraine makes him grateful.

Visual disturbances associated with migraine are a neurological symptom that lies outside human control. Experience tells Carlos that it’ll pass after about 10 minutes. His body is not so sure.

A Sunrise

Grateful?


Grateful for the headaches, for the cancellations and delays, for all the times his wife Katia has shushed the boys to give him some quiet? For the frustrating result of that qualifying race in Las Vegas?


Yes, Carlos answers. He’s grateful. He has a couple of attacks a month. Other people have chronic migraine – meaning that their attacks take up more than half of each month. He’s very aware that for these people, the condition is a different beast than it is for him. He’s not better at managing his migraine, just luckier. Chronic migraine is disabling, and he feels compassion for the people who suffer from it.


The conversation turns back again to that qualifying marathon.


It’s a fact that it turned into a harrowing race for Carlos – and that he didn’t qualify. It’s a fact that his many months of preparation ended in disappointment. Yet then there was the experience: during the race, the sun rose in the desert and blinded him. The light made his headache worse, and the marathon pain and the migraine pain merged into one. He poured water over his head to provide some relief. That was real. The sunrise was blindingly beautiful.


That was real too. 

Migraine Facts

A migraine attack is a severe headache that stops a person from going about their daily life. Some people also experience symptoms know as ‘aura’ – temporary disturbances of vision or other senses, such as seeing flashes of light, having blind spots, or feeling pins and needles.1,2

 

Worldwide, 1.3 billion people live with migraine.3

 

The most likely age group to have migraine is the one from 35–39 years.4

People with migraine miss an average of seven days of work or activities per year due to their condition.5

 

Migraine headaches are made worse by normal activity such as walking or climbing stairs. A person with a migraine attack may feel nauseous and may be extremely sensitive to light and sound.1

 

Only around 40% of people with migraine have consulted a doctor.6

1. Headache Classification Committee of the International Headache Society (IHS). The International Classification of Headache Disorders, 3rd edition. Cephalalgia. 2018;38(1):1–211.

2. Weatherall MW. The diagnosis and treatment of chronic migraine. Ther Adv Chronic Dis. 2015;6(3):115–123.

3. GBD 2017 Disease and Injury Incidence and Prevalence Collaborators. Global, regional, and national incidence, prevalence, and years lived with disability for 354 diseases and injuries for 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017. Lancet. 2018;392(10159):1789–1858.

4. GBD 2016 Headache Collaborators. Global, regional, and national burden of migraine and tension-type headache, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol. 2018;17(11):954–976.

5. Alonso J, Petukhova M, Vilagut G, Chatterji S, Heeringa S, Üstün TB, et al. Days out of role due to common physical and mental conditions: results from the WHO World Mental Health surveys. Mol Psychiatry. 2011;16(12):1234–1246.

6. Merikangas KR, Cui L, Richardson AK, Isler H, Khoromi S, Nakamura E, et al. Magnitude, impact, and stability of primary headache subtypes: 30 year prospective Swiss cohort study. BMJ. 2011;343:d5076.

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