My Never-Ending Migraine
By: Lisa Levy
Tags: Health, Drugs, Pain, Migraines, Treatment

My Never-Ending Migraine

Finding effective treatments for migraines is its own headache

Credit: smartboy10/DigitalVision Vectors/Getty

I was somewhere between my midtown Manhattan office and the subway station on Broadway when I first noticed the pain. The left side of my head felt like it was hit by a mallet — not the kind you might use in croquet, but a wood-and-iron giant hammer Thor-type thing. The pain nearly knocked me off my feet. Suddenly, the mild summer day was stifling. My dress stuck to me; my bra itched and chafed; my sandals were rubbing my heels raw. I began to see fleeting spots that I would later learn was an aura, a signal that a headache is coming.

I ditched my lunch plans and booked it back to my apartment. I lay down on my futon sofa in the living room with a huge glass of water, some tissues, Advil, Benadryl, and a rerun of Law & Order. But the pain spread, and the sensation was changing. The vocabulary to describe my symptoms would come later, when a series of neurologists would teach me the various words to describe a strain of pain: imploding, exploding, throbbing, stabbing, pulsing, and aching. I’d be introduced to the ubiquitous pain scale: a series of emoji-like faces that start out pain-free (level one) and move to contorted agony (level 10).

That’s how it started 16 years ago, and in a sense, that headache has never ended: My migraines usually last for days, sometimes for weeks or months. During a good stretch, I average around five per week.

A migraine is a particularly cruel kind of headache, and it’s relatively common: In the United States, more than 38 million people suffer from them, and 70 percent are women. Some studies estimate that up to 3 million people suffer from chronic migraines, like I do.

Migraines are maddeningly different for every person, and sufferers like me often cycle through a laundry list of drugs that either prevent migraines, called preventatives, or stop an attack, called abortives. Over the past decade and change, I’ve seen 10 neurologists and tried many preventives, all of which were prescribed to me off-label, meaning they’re not specifically meant to treat migraines but have been shown to work for some people.

Pain makes your world very small and unpredictable.

Currently, I take Keppra, an anti-seizure drug with the odd side effect of undifferentiated rage; Namenda, used for dementia; Lisinopril, a high blood pressure medication; and Zyprexa, an antipsychotic often used to treat bipolar disorder. I get Botox every three months as a series of 20 or so small injections that numb the nerve endings in my head. I’ve also tried multiple nerve blocks, a treatment where the major nerves in the head are injected with a numbing agent. Those injections hurt so exquisitely that I sobbed the first few times I got them. Right now I’m exploring a procedure called radiofrequency ablation, where doctors use electric stimulation to try to reset the major pain-causing nerves.

I’ve also tried a long list of abortives without success. These mostly belong to a class of drug called triptans, which were developed in the 1990s and are used exclusively to abort migraines. Triptans are serotonin receptor agonists, so they work on the same brain chemicals as certain antidepressants, and if you take both — which I did and still do — you have to watch out for a nasty condition called serotonin storm, the result of excessive activity in the brain. Symptoms include agitation, twitching, shivering, and sweating.

Sometimes I get an infusion at my neurologist’s office of ergotamine, or DHE. Inpatient treatment for migraines in hospitals consists primarily of intravenous DHE every eight hours for four to seven days. It’s by no means a simple solution, but it has a special place in my heart after a week of IV treatments at a hospital helped partially quell a devastating eight-month headache in 2013. I left the hospital with my headache slightly better but still unbearable. Desperate for a better solution—my current neurologist no longer knew what to do—I went to another doctor, who put me on the pill form of ergotamine, called methergine, which finally broke the mega-headache of 2013.

But the damage was hard to recover from. That mega-headache had started in May, right before my wedding. (I had to get a separate infusion on the day of my bachelorette party.) It forced me to take medical leave from my job, get inpatient treatment, and postpone my honeymoon. I finally got better — as in I could leave my apartment — around December, but I didn’t really feel 100 percent until February of 2014.

When you suffer from migraines, you try to curb your enthusiasm when you hear about a new drug. But in the past year, there’s been a major development: Aimovig. This drug is a monthly injection you do at home and boasts practically no side effects — just constipation and inflammation at the injection site. Rather than spending days to weeks getting pricey injections at a hospital, Aimovig theoretically allows patients to control their preventative care.

Aimovig is considered a novel treatment in that it was developed specifically for migraine prevention. It’s the first FDA-approved drug that blocks the calcitonin gene-related peptide receptor (CGRP-R). When the brain releases CGRP-Rs, they cause inflammation, which results in migraine pain. Studies have shown that the drug can reduce migraine severity by 50 percent.

The drug seems pretty straightforward. What’s still unclear is how migraineurs are supposed to pay for it. The cost of an injection is currently $575, and it’s uncertain if insurance companies will cover it. So far, only Express Scripts has said it will. The bright side is that Aimovig won’t be the only drug acting on CGRP-R receptors for long. Two similar drugs, Ajovy and Emgality, were approved by the FDA in September 2018 and are getting into the hands of patients.

When you suffer from migraines, you try to curb your enthusiasm when you hear about a new drug.

The migraine world is incredibly excited about these drugs because they’re the first developed specifically for migraine pain since triptans 20 years ago and because of clinical trial results. “It’s possibly changing the landscape of the way migraines are treated,” says Rachel Colman, MD, my neurologist at Mount Sinai’s Headache Clinic. “I’m very excited to see how it will go. This feels like a great time to be in migraine care.”

There are few things I wouldn’t do for a 50 percent reduction in migraine days. Right now, I have a migraine of varying intensity every day. While insurers are still considering their coverage plans, the companies making Aimovig are offering people two free doses. They’ve also started a program called Aimovig Ally that reduces the cost for those without coverage or who have insurance providers that have denied coverage. I enrolled in the program to get two free doses of Aimovig and then joined the Ally program. I took the drug in September, October, and November of this year.

Unfortunately, Aimovig hasn’t made a dent in my migraine consistency. I’m now in a six-month headache that started in July 2018. Once the other CRGP-R-acting drugs are on the market, I plan to try them if I can get the drugs for free or at a reduced price. I’m also looking into the getting ketamine infusions, which work on some migraines and have the bonus of alleviating anxiety and depression. I suffer from both, but that’s a whole other flotilla of drugs I’m not going to list. Suffice it to say, I have the nightstand of an 80-year-old woman.

It’s hard not to get discouraged. I spend a lot of time lying in a dark room or zoning out with the TV on if I can handle the noise. I read if I don’t have the aura that screws with my vision. Pain makes your world very small and unpredictable. I’ve gone from being a super-reliable and competent person to someone who cancels things constantly and can barely work, let alone perform the basic tasks of living. I have many days when my migraine is so bad I can’t eat or sleep. Still, I have a neurologist who doggedly keeps looking for treatments that might help me, and I will keep trying every new treatment that I can get my hands on.

My migraines may be trying to ruin my life, but I’m holding on to hope that my circumstances will change. Until then, I continue to alternate between despair that I will never get better and a wish, however fanciful or far-fetched, that one day I will conquer my chronic pain and say goodbye to migraines forever.