Dreaming of a World Without Migraines
a girl can dream
On March 12, 2020, I went to my primary care doctor complaining about headaches arising from neck pain. That was the beginning of my effort to figure out what was causing these debilitating headaches and how to treat them. In some ways, my life feels like two distinct phases, before this doctor’s appointment and after. That day and the preceding months mark the first time in my life I remember getting headaches so bad that I had to skip work or crawl in my bed in the middle of the day.
For a little background, the onset of migraines can begin at any age, though the first often occurs during adolescence. Migraines tend to peak during your 30s, and gradually become less severe and less frequent in the following decades. I don’t remember getting migraines in high school or college. I definitely had headaches, but they were easily solved with ibuprofen or time. The migraines I began to develop in my 20’s were not like this.
At the March 12 appointment, my primary care doctor prescribed me muscle relaxers for my neck, which I never took. I wanted to get to the root of the problem. Because the pandemic shut the world down days after that appointment, it was quite a while before I was able to get tests done to address my migraines.
In early October of 2020, I received an x-ray of my cervical spine which found “straightening of the cervical lordosis.” In layman’s terms: “straightening of the cervical lordosis impacts the biomechanics of the entire spine; it makes it vulnerable to injury, impairs its ability to support the weight of the head, places added pressure on the spinal discs (speeding up disc degeneration), and can cause adverse muscle and joint tension.” Functionally, this straightening can lead to the neck extensors working WAY too hard, thus leading to migraines radiating from the neck.
These migraines are called cervicogenic headaches. They are often caused by trauma (like a car crash) or an underlying medical condition. For me, these headaches are likely caused by a mix of my cervical diagnosis, my general posture, and my genetic predisposition to headaches (thanks mom!). Learning all of this was helpful; it felt nice to get a diagnosis because I had pain, but at the same time, it felt overwhelming.
The first step was physical therapy. My primary care doctor felt that physical therapy could help my posture and the strength of the stabilizing muscles in and around my neck and back. At the same time, I was doing LYT Yoga regularly so the power of physical therapy was pulsing through my veins.
Those two photos were just 20 days apart, yet you can (hopefully!) see how much LYT and three weeks of physical therapy impacted my posture. I kept going to physical therapy until December, when I graduated due to a decrease in headaches and increased postural stability. I wish the story ended here.
I’m convinced that the decrease in headaches was somewhat a placebo effect, and also the result of a fully-committed approach to posture that I was unable to keep up when I had to go back into work more frequently. In the months following physical therapy, my migraines were still there, in full force.
To give you some context, I was getting between 13-18 headaches a month with 2-4 of those being full blown migraines. Some were day-ruining and others were manageable. But regardless, they impacted my daily life and ability to do what I enjoyed.
Nearly 40 million Americans get migraines (28 million of them women) which makes migraines the second most disabling condition in the world after low back pain. Several studies have found that migraines became more frequent during the pandemic, too. This article in the New York Times beautifully summarizes the role sexism has played in the lack of funding for migraine research. A little snippet:
Despite its ubiquity, research on migraines has long been underfunded. The National Institutes of Health spent only $40 million on migraine research in 2021; by comparison, it spent $218 million researching epilepsy, which afflicts one-twelfth as many Americans. Why is this devastating condition so woefully understudied?
“It’s a woman’s disease,” explained neurologist Dr. Robert Cowan, former director of the Stanford Headache Program. In other words, he said, sexism almost certainly plays a role in medicine’s apathy toward the condition.
I’ll take a second here to explain the difference between headaches and migraines. This opening to another New York Times article summarizes it far better than I can:
If you live with or work with someone who suffers from migraine, there’s something very important you should know: A migraine is not “just a headache,” as many seem to think. Nor is it something most sufferers can simply ignore.
Migraine is a neurological disorder characterized by recurrent attacks of severe, often incapacitating headache and dysfunction of the autonomic nervous system, which controls the body’s myriad automatic activities like digestion and breathing. The throbbing or pulsating pain of migraine is often accompanied by nausea and vomiting.
Translation: Migraine is a headache, all right, but with body-wide effects because the brain converses with the rest of the body. It is often severe enough to exact a devastating toll on someone’s ability to work, interact with others, perform the tasks of daily life, or even be in a normal living environment. When in the throes of a migraine attack, sufferers may be unable to tolerate light, noise, smells or even touch.
As both articles explain, migraine research has been underfunded given its vast impact on the population. But there are slowly more and more options for migraine sufferers, like myself. In early 2021, I was still struggling with almost daily headaches and monthly migraines and knew I had to try something different.
First, I tried daily medication. The major problem is that cervicogenic headaches are not typical headaches. Since they are rooted in muscle or bone trauma or dislocation, medication often doesn’t work. I went to a neurologist who prescribed amitriptyline. This prescription came after the doctor asked me if I was trying to gain or lose weight since that would impact what medication she prescribed me. I assured her that I was trying to do neither and she seemed genuinely confused about which medication to prescribe since most people seem to answer one or the other.
I’ve been tracking my headaches since December of 2020 so I had a pretty good gauge of how effective the medication was or wasn’t. Amitriptyline did not work for me so I stopped it after a few months.
Second, my doctor referred me to a pain management division that specializes in headaches. After signing an obscene amount of paperwork, the doctor injected a nerve-numbing substance around specific nerves in my neck in order to stop them from sending signals to the brain. It was very uncomfortable. After three months, I received another round of nerve blockers from the same doctor. Still no luck. The migraines were still there.
Fun fact that I learned through this process: Nerve blockers are NOT covered by my insurance. I had to send a 10-page appeal to United Healthcare with pages of research on nerve blockers to get them to cover it. It took months of pestering by me and my doctor until they finally covered most of the procedure.
So where am I now?
I’m taking a daily medication again (called propranolol) which is doing nothing and I need to make an appointment with my doctor to start weaning off of it. BUT I do have some good news. In February of 2022, my doctor prescribed sumatriptan (better known as Imitrex) which is used to address the symptoms of migraines. You take it when you feel a migraine coming on and it works within 2-3 hours.
Sumatriptan has given me a 100% success rate in regards to resolving migraine symptoms but not without some serious side effects. Sumatriptan gives me an upset stomach and causes full body aches; often I end up dizzy or light-headed for hours. All side effects usually go away within 3-4 hours of taking the medication.
I’m really grateful that I have medication that I know will relieve my migraines. Though it makes me feel like shit, I do appreciate the control it gives me. But I can’t help feeling frustrated that the solution to my migraines is something that still sucks.
When I think about my barriers to a joyful life, migraines and anxiety top the list. Migraines make it impossible to function normally when they come on. Their unpredictability is annoying. I have to skip or change whatever I had planned for my day. In my worst moments, I feel angry that I was cursed with frequent headaches and migraines. It feels so unfair. I know there are other solutions. A lot of people have recommended Botox injections or Gua Sha for relaxing the muscles around my neck and jaw. I know there are other medications I can try, too. I will likely pursue those eventually, but at the moment I’m allowing myself to be angry!
As I write this, I can feel a migraine developing. I can feel my jaw get sore and achy. I can feel my eye sockets starting to throb. I can feel a crushing pressure starting to set in around my head. I have to start the song and dance of when to take sumatriptan so it doesn’t ruin my day entirely. In a few hours you will probably find me curled up in Ryan’s lap on the couch with nausea and body aches, waiting for the three hours of discomfort to be over. Just a day in the life. Still working on the joy part.