Hi, I'm Jordan. I’ve spent seven years living with migraines, and four years trying to find a treatment that works.
(I spent the first three years blaming my migraines on stress, doing nothing about them because I thought they were my fault.) Currently, without treatment, I have at least 15 migraine days a month, and wake up every day with some sort of headache. So I’m sort of like Goldilocks — there’s a lot I’m willing to try just to make myself comfortable. Goldilocks, however, didn’t have to stick a bunch of needles in her head to figure out how to feel “just right.”
Migraines are complicated. While the pain typically presents the same way — an intense throbbing pain on one side of your head — other symptoms like nausea, fatigue, and sensitivity to light and sound can vary from person to person. Because so many people think about migraines as basically just bad headaches (take some Excedrin and be done with it!) it can take years to find a treatment plan that actually works, if you ever do.
My own migraines are chronic (rather than episodic) which means I have 15 or more migraine days a month, and that’s a big part of why they’re so debilitating. Most of them are also “with aura.” Auras can present as many kinds of visual, mental, and physical symptoms in the time before a migraine starts; in my case, I often have trouble speaking or finding the word I’m looking for, my sense of smell is heightened to the point that every smell is nauseating, and my vision blurs.
Finding the right treatment for migraines is hard.
Over the past four years, I’ve tried over-the-counter pain relievers; tricyclic antidepressants; a combination of butalbital (a barbiturate), acetaminophen, and caffeine; a variety of supplements including CoQ10, butterbur, feverfew, and magnesium; several different kinds of nausea meds; and triptans — in both pill and injectable form — which are a commonly prescribed rescue medication that helps with the pain.
Sometimes the butalbital combination would work, but it often left me with a medication headache. Triptans helped the most, but they made me feel groggy, and my insurance would cover only a few pills or injections a month.
I started to keep a journal of my migraine triggers, only to discover that everything seemed to trigger my migraines. My life became a juggling act of trying to avoid triggers like beer, wine, skipping meals, being dehydrated, being too hydrated, flying, thunderstorms, rainy weather in general, my period, birth control, stress, going to the movies, concerts, bright lights, loud noises, exercise, cigarette smoke, not sleeping, sleeping too much, being sick, drinking coffee, and not drinking coffee. I changed my diet, told my boyfriend it was me or the cigarettes (he picked me, thankfully), and tried my best to limit my exposure to the rest.
By the time my doctor suggested trying Botox, which was approved for treating chronic migraines by the FDA in 2010, I was burnt out. My days were limited to working and sleeping. Desperate for relief, I made an appointment with Allyson Shrikhande, MD, a physical medicine and rehabilitation specialist at New York Bone and Joint Specialists in New York City.
She decided I was a good candidate for treatment — I have at least 15 migraines days a month, and I’ve tried several different treatments with only minimal success. Since I fit the criteria, my insurance approved the treatment and I scheduled an appointment to get my shots.
Twenty-five years of research show that Botox does help treat chronic migraines, but the treatment takes time (and money).
While the FDA approval of onabotulinumtoxinA (Botox) for migraines is somewhat new, the idea isn’t. To learn more about how Botox affects migraines, I spoke to Sheena Aurora, MD, a headache specialist at Stanford Health Care, who worked on the clinical trials that led to Botox’s FDA approval and to the guidelines that are used for today’s Botox treatments. I also talked to my doctor, Dr. Shrikhande (while she was injecting my face).
The discovery that Botox could be used to treat chronic migraines was pretty much a happy accident. A cosmetic surgeon who used Botox for his patients’ forehead wrinkles was the first to make the connection, says Dr. Aurora, when several of those patients noticed that their headaches improved after treatment.
Studies on the treatment followed, totaling 25 years of research. Today, Botox is approved only for people with chronic migraines, like me; Aurora says that in her research, Botox didn’t produce any better results than a placebo did for patients with non-chronic migraines.
“Basically it’s used for muscle spasms, so it can be used anywhere a muscle is spasming,” Shrikhande told me. (Botox is also FDA-approved to treat problems like overactive bladder, severe underarm sweating, and crossed eyes.) She added that “People think [Botox] just relaxes the muscles, but it also inhibits important brain chemicals that cause pain. So anything that inhibits those is going to help with your pain everywhere.”
Botox must be given in cycles; it’s not a one-and-done kind of treatment. According to Aurora, approximately 75% of patients respond to the first treatment. Some people don’t respond until the third treatment, but typically the response improves over time, she added. From injection, Botox takes about 10 to 14 days to work, and lasts about three months.
After those three months it’s time for another injection. Some patients need Botox for only a little while, says Aurora, but patients were studied for only 15 months, so how long one person will need to continue Botox will vary.
It’s also worth noting that Botox is expensive! My insurance covered the full price of my treatment, but without coverage, one treatment typically costs around $1,500.
So, here's what getting Botox for my migraines was actually like.
So far, I’ve had three series of injections. The first was in July, the second was the beginning of December, and the third was during the first week of April. (The photos are all from my second round of injections.)
Botox for migraines consists of 31 injections (!) across seven different sites. The first injections were in the center of my forehead. And because the forehead injection sites are similar to the ones used in cosmetic treatments, I get the added benefit of minimized wrinkles.
However, according to Aurora’s research, forehead injections alone aren’t enough to get rid of migraines. So, sorry to the celebrities, Real Housewives, and anyone else who gets Botox cosmetically. You’re going to need more of it if you want to bust those migraines.
And speaking of people who get Botox regularly as a cosmetic procedure...ow.
I have a fairly high pain tolerance (see above regarding years of ignoring migraines) and I sniffled through the whole thing. I really wasn’t prepared for how painful it was going to be.
Moving on: The next injections go into your temples, four on each side. Shrikhande does these injections and the ones in my forehead while I am lying down, so that the Botox stays in the area of the injection site. Sitting up increases the chance of the Botox spreading downward, which can lead to facial drooping. I don’t want caveman eyebrows, so I’m happy to oblige.
Next come the scalp and the back of skull area; there isn’t that much skin to pinch, which makes it really painful. Then the injections move down the back of my next and shoulders, evenly spaced on left and right. And finally, I’m done. Migraines be gone…10 days to two weeks later, that is, when the Botox actually kicks in.
So, did the injections actually work? Well...at first, yes.
After my first set of injections, I felt great. I could go out without having to stock my purse like a pharmacy. I could go out, in general. I went from being the flaky friend to being the less flaky friend. I took an extended trip to Paris and London and had only one migraine.
I wasn’t sure how well the Botox would work or how long it would last, so I didn’t schedule my second set of injections for three months later, which I should have. This was a big mistake, because while waiting for my Botox to be refilled — which took almost a month between insurance approval, getting it filled by a specialty pharmacy, and then mailed to my doctor — I had back-to-back migraines.
Those almost pain-free months had spoiled me. I had forgotten what my migraines were like, and when my first injections wore off, the headaches felt 100 times worse. It was devastating. By the time my appointment rolled around, I was at the point of having to drag myself out of bed to my doctor’s office.
My second set of injections were Dec. 2, so ideally relief should have come around the middle of the month. That didn’t happen. December was pretty lousy compared to how I felt following my first set of injections. According to Aurora, Botox prevents up to nine headache days a month. So if I have 15 headache days, ideally Botox would reduce that to around six. But I had about nine headache days in December. Given the two-week lag time, the Botox was probably doing its job. It just wasn’t working as wonderfully as it did the first time — a placebo effect, perhaps?
For Christmas, almost a month after the injections, Santa brought me my period and a three-day menstrual migraine. I got frustrated and I might have (definitely) cried. I had done my research, I had spoken to several doctors, and I knew this wasn’t a cure, but there was no reasoning with myself. I was disappointed.
Not only did I feel lousy, but I was unprepared to deal with the pain I was in. Without treatment, my migraines all feature the same dull throbbing pain on the right side of my head. With Botox, the pain is different, less dull and on the left side of my head. Perhaps it sounds ridiculous, but this switch made for a tough adjustment. I spent three days moping around like a hungover zombie, and then it passed.
I also noticed some facial changes.
Because the Botox paralyzes the muscles in the center of my forehead, my facial expressions stood out more. My eyebrows went from pretty flat to fairly arched. I wasn’t the only one who noticed a change; a colleague of mine asked what was going on with my “Spock brows.” My guess is the Botox traveled a bit, paralyzing more of my forehead and pushing down the front of my eyebrows. It didn’t last long, though, and by mid-January my supreme arches faded away. (I miss them.)
Taking my new brows for a spin.
Here's the good news: The past few months have been much better.
As December came to a close, I was less than confident that January would be any better. I refilled all of my migraine medications and waited. And while I waited, I started going back to the gym, cooking, writing more, and spending time with those I had neglected.
But I had only four migraines in January, and all except one were pretty minor. In February, again, I only had several migraines — and one was triggered by a six-hour flight. For most of the time between January and my third series of injection in April, I’ve been able to wake up without a headache, nausea, or feeling like each strand of hair on my head is on fire. As the Botox wore off, later in March, I was back to about four migraines a week. That’s when I knew it was time for round three.
Botox is not perfect, but it’s as close as I’ve gotten since my migraines began seven years ago. Plus, with my insurance, it’s cheaper than taking pills or injections every time I get a headache. I can confidently say Botox has given me significant relief from my migraines, and I plan on continuing treatment. Still, I can’t help but wish for something even better.