Then, I began yawning. This was the sign that a migraine was starting. I started rolling down that padded cliff slowly. This would occur half an hour prior to my interview with Dr Peter Goadsby. He was the man who is forcing the world into taking migraines seriously. I sipped water as he scrolled through Zoom backgrounds. Beach scene? Too casual. A meeting room with framed certificates? Too formal. With a heaving bookcase, home study? It's just right.
Dr Goadsby politely asked me how much I knew about migraine. I took a moment and thought it over. One hand, it's too much. I say, "I have one now." They have been a part of my life since childhood. One early memory is the night I couldn't read a book. I thought it was only temporary. A few years ago, I was diagnosed with having suffered a series strokes. I also developed a blind spot in the right eye. Later, I discovered that the blind spot was a persistent aura. This is the light that appears at the start of a migraine but never leaves. I am so used to suffering from headaches that when I felt my first labour pains, I knew I had been through it. On the other hand, I don't know much. What does this have to do with blood vessels Chocolate?
He replied that everything he'd said up to now was a common experience. That's what I find extraordinary. It's amazing, I think. You, who don't seem crazy at all, have managed to live your life without being completely focused on the pain. I believe that people accept their normality.
He is a storyteller. Goadsby was 17 years old and lived in Sydney. He went to get his driving permit, but when he was asked to read the chart, he couldn't even make out the largest letters. His mother told him that he had injured his eyes while studying. A few weeks later, he returned to school but couldn't read the letters. I thought I was normal until I got glasses. Although I would not consider myself to be stupid, I do feel self-contained. It's easy to experience something profoundly different from normal, and not notice it. It was easy to have something that is not normal and not notice it.
It doesn't matter how severe someone thinks a headache is in a broad societal context. What the headache stops them from doing is the most important thing. Because people with migraine are a productive group, it's not the disability aspect of things. My colleagues and all funders that are listening, I remind them that migraine is a tax payer disorder. Finally, migraine is getting its due.
He is a bit modest about the claim, but this is in large part due Goadsby's pioneering research. He insists that technology is the real reason. He gives an example: 200 years ago, epilepsy sufferers would have been burnt at the stake and treated as witches. When you think of migraines, which can be more complicated than other neurological conditions in that there is no obvious marker I can see you with, but can't tell you have migraine, brain imaging can be crucial. It is possible to image the brain of someone suffering from migraines and see differences. This helps to focus the mind. Specific treatments can be helpful here. A treatment for migraine is one that you can trust. It doesn't matter if the treatments don't target migraine. In the past, people suffering from the condition were prescribed medications to treat depression and epilepsy. This technology has allowed migraine to gain an advantage by allowing for better imaging, genetics and pharmacology.
Dr Peter Goadsby: You can't help but feel optimistic Photograph: Ken McKay/ITV/Shutterstock
He has. Goadsby became interested in migraine when he was a medical student in Australia. It was the challenge and frustration that attracted people to this field. It was so overlooked. It was dismissed as a trivial topic. Because pain is subjective, it can be difficult to study pain disorders. There's also the gender thing. Goadsby sighs. Look back 40 years. It doesn't take a rocket scientist or a genius to see that three out of four migraine sufferers are women. If there is a comorbidity (a biological problem of anxiety or depression), and there are periods, then what are you going to get? There are some stupid interpretations by doctors who claim they're crazy. It's so profoundly biological, with the circulating levels of oestrogen, that I have never understood why doctors would believe it was not biological. Because you have biology in front of your eyes, you don't need to explain it as crazy. There was an old protective mechanism that doctors used to hate to admit they didn't know or to accept they were incapable of doing something. Instead of saying I don't know, the alternative is "The person in front of you is crazy." What's the point? Take control and get moving!
Goadsby met Lars Edvinsson, a Swedish doctor who shared his interest and knowledge about a molecule called calcitonin-related peptide. This is what neurons use to communicate. Edvinsson suspected that it played a crucial role in migraine. Goadsby agreed. The partnership continues to this day. Goadsby was awarded the Brain Prize this year along with Edvinsson, two other scientists. The discovery of a biological mechanism that triggers an attack in the brain, where blood vessels around the brain open up causing discomfort, led to a new class of drugs that block CGRP from reaching its receptor. These drugs can either be binding to CGRP or blocking it. Goadsby suggested for a long time that nerve-based mechanisms might be important. The mainstream resisted this idea for some time because it did not fit with their narrative. It turned out that we were right. We were correct.
Goadsby ignored a message from the Brain Prize foundation, saying that he wanted to talk to them. He was certain he had filled out a grant form incorrectly, and he didn't call back. He says migraine is a Cinderella problem. All diseases are not treated the same. Just as Cinderella couldn't see from her kitchen, as she watched as beautiful clothes and wonderful invitations were sent to her step-sisters, so some diseases don't get access to research funding, celebrity campaigns, or public awareness. After calling Goadsby, Cinderella was invited to the ball and received the prize (worth over 1m).
He has become a celebrity in a very niche field. Interview with me by The Daily Mail. He chuckles and I say, "Can I ask why you focus so much on migraine?" They said it was because it's common! We do common! I felt like such an idiot. It is possible that one in three adult females are interested, so someone might pick up the Daily Mail or the Guardian. However, neurologists were able to learn from neurologists in an era where common practice was rare.
It is common. I was slightly shocked and hurt when he said that my pain, blindness, and ignorance were common. It was all over. It was a part my identity, like my taste in desserts or voice. But migraine became incredibly personal. These migraines aren't exactly headaches. They feel more like a painful portal or a poem. Siri Hustvedt, the author of Alice in Wonderland syndrome described a migraine aura phenomenon where the migraineur (a term that is appropriate for my community) feels their body shrinking or ballooning.
Science proves us right.
It is usually my hand. I experience intense dj vu and yawning. Sometimes, it's a quick, swaddling depression. I'm not referring to a headache. It's a great canvas for artists to explore. Joan Didions 1968 essay in Bed, which she claimed received more responses than any other she wrote, describes both a pleasant euphoria as well as the uncanny horror. She wrote that I did not have a brain tumour. There was no eyestrain, high blood pressure or anything wrong with me. I just had migraine headaches. After purification, I see the unique nature of a flower in the glass on the stair landing. I count my blessings.
This is partly why these migraine side effects are so confusing and cryptic. I found Goadsby's findings about the premonitory stage particularly fascinating. Some people might feel a bit off their game, and may experience neck pain or brain fog. People can feel tired, yawning, pass more urine and crave sweets, which could cause a mood change. It sounded exactly like it did to me. And he proved that the attack had already started. Some people would feel light sensitive and believe bright lights trigger their attacks. Some of this could be because they saw the light before their attack began. The horse had long since fled. To understand migraine, one must push back.
Goadsby has a special respect for those who willingly agreed to be his guinea-pigs and were subject to the attacks for their experiments. To be honest, it's because you care about society. It's the only rational reason, and it never ceases amaze me. I was speaking to someone who had suffered from a terrible 30-years-long migraine. Nothing worked. Then he tried one of these antibodies, and he has felt almost normal for the past three years. You think, "Well?" You think, well? It was great. He laughed. It's not a long conversation.
He is referring to the end of migraine. This is a debilitating condition that has led to a doctor advising me to accept my disability. He promises that this is only the beginning. The increased attention will be beneficial even for those who don't respond to the new medications. He is particularly excited that the tablets will eventually be patentable so generic manufacturers can make them for pennies. This will not only change the world of the developed countries, but also impact the poor who are suffering just as much. When you realize that the world will improve, it is hard not to be optimistic. It's all about patience.
With a fizzing enthusiasm that leaves me feeling a bit breathless and believing that I understand science, he talks about his breakthroughs and the ones that followed. It was the first time people had ever attempted immunopharmacology. Instead of manipulating the immune system with antibodies, you are using the antibody to make a drug. He rushes to grab a parcel at the front door, and then returns midsentence casually.
A crucial moment happened recently when a patient suffering from migraine realized that he was about write his first prescription for one the drugs he had invented. There are very few situations in my life where I would use surreal. But this was one. No. He just looks up with a small smile. He didn't seem to think that there was any reason for me to tell him.
