Brain on fire: Migraine sufferers find hope in new advances

·15 min read

May 2—LEWISTON — Every three months, Michael Hanson heads to the hospital for the latest rounds of Botox injections.

Over the course of 10 minutes, he sits and endures shots in 31 key areas around his head and neck.

Migraine medications

Lewiston neurologist Carl Robinson breaks down the current state of migraine treatments:

Meds taken as needed to halt a migraine headache that has already started. The standard medication in this category are the triptans. Triptan medications typically are named accordingly: Sumatriptan, rizatriptan, zolmitriptan, etc. This class of drugs has been around many years and began with sumatriptan, known commercially as Imatrex.

There are also three new non-triptan abortive medications, one of which is called Reyvow (approved October 2019), the other two of which are called Ubrelvy (approved December 2019) and Nurtec (approved March 2020).

"These three new medications are giving us new options for abortive treatment of migraine in those patients who cannot take triptans for some reason," says Robinson, "or for whom the triptans are ineffective."

Preventative Meds taken at regular intervals to help reduce the frequency of headaches.

"We have a number of oral medications that were designed for other things — high blood pressure, seizures/epilepsy, depression, to name a few — that turn out for some people to be helpful for migraine," says Robinson. "Topiramate (the generic name for the drug Topamax) is one of the more commonly prescribed medications from this category, as well as propranolol, a medication for high blood pressure or heart disease, or amitriptyline, an anti-depressant. These meds have been used for many, many years. They can be helpful for some, but sometimes side effects limit their use."

Botox has been FDA-approved for headache prevention in patients with chronic migraine (more than 15 headache days per month) since 2010.

"The new migraine preventatives that block (the inflammatory protein) CGRP are called Aimovig, Emgality, Ajovy, and Vyepti," according to Robinson. "The first three medications, all given as injections that patients administer themselves once per month, have been available since 2018. Vyepti is an IV infusion given every three months. These medications have offered relief for many patients who could not find relief from the oral medications, or patients who had side effects from these medications.

"So you can see one of the main reasons for confusion," Robinson says. "We have a number of new medications that block CGRP, but some are used as-needed, like Ubrelvy and Nurtec, and some are used as a preventative medication, like Aimovig, Emgality, Ajovy, and Vyepti."

Nearly three dozen shots in just 10 minutes.

Sounds miserable, right?

Hanson wouldn't skip the routine for anything.

For just about all of his adult life, the 50-year-old has been suffering migraine headaches that wrought havoc on his life.

"It finally got to the point I was having one a day or every other day," Hanson says. "I would have more migraine days a month than pain-free days. It lead me down a very dark path to a deep depression."

Like most migraine sufferers, Hanson tried a little bit of everything to make the pain — an agony so intense, studies have shown that many migraine sufferers have wished for death — go away, if only for a little while.

He tried painkillers, off-label treatments, preventatives. He went from doctor to doctor, willing to try just about anything to make it stop.

Ultimately, Hanson ended up in the office of neurologist Dr. Carl Robinson at St. Mary's Regional Medical Center. Robinson wondered if Hanson might be willing to try Botox, a fairly new method of treating migraine that has offered astounding results in recent years.

But why would somebody who already suffers from crushing headaches be willing to endure that many shots in their head and neck, and all in one sitting?

You have to understand the mentality of a migraine sufferer. Just about all of them will tell you that the drilling pain of migraine is so immense and so debilitating, they would do just about anything in the world to put an end to it.

"By the time people get to me, they're frankly disabled," Robinson says. "They're getting migraines that are really frequent, really disabling or often both. One of the diagnoses that I see frequently is called chronic migraine. By definition, if you have chronic migraine, you have 15 or more headache days per month — I see people with chronic migraine on a daily basis."

Hanson was one of these people and it was wrecking his life, so, without hesitation, he agreed to take the Botox treatment. As promised, his suffering began to ease.

"Botox is definitely working for me," he says now. "It seems like headaches continue to decrease in frequency and intensity. I only seemed to get them around stressful times or in the case of last week, when I am overdue for my next round — they start to creep back. It's been about a year and it works fantastically for me."

Dr. Robinson is pleased, and he's not surprised. Most patients who have taken on the Botox treatments have no regrets, in spite of the number of shots they have to endure.

"People tell me, I'm fine to trade 10 minutes of unpleasantness for three months of relief," Robinson says.

How does it work? Botox is best known for its cosmetic uses, but Robinson isn't giving anybody a face lift. It's believed that Botox enters the nerve endings around the injection sites and blocks the release of chemicals involved in pain transmission, though the exact nature of its magic isn't fully understood.

"We know very clearly what happens when Botox is injected into muscles," Robinson says. "It causes muscle weakness by blocking the release of the neurotransmitter (called acetylcholine) required for muscle contraction. That's why, if you inject it into the forehead where there are wrinkles, the muscles are paralyzed and the wrinkles go away. People use Botox cosmetically for this effect. With migraine, however, the current thinking is that the effect on muscles is probably not the reason why Botox works. Botox is having other, less well-understood, effects on the nerves."

However it works, it's effect on migraines is great news for those who suffer them. And Botox, approved for migraine treatment in 2010, isn't the only new player on the field. In just the past three years, Robinson says, the treatment of migraine headaches has taken giant leaps forward after years of stagnation.

"I've been here with St. Mary's for 20 years and for 17 or so, treatment of migraine didn't really change that much," Robinson says. "But beginning in 2018, it's been a really exciting time to be treating migraine because we have stuff available to us that's specific for migraine in a way that other stuff wasn't."

Previously, a migraine sufferer was limited to taking over-the-counter painkillers, or "abortive medications," drugs which are meant to be taken at the onset of a migraine.

"We've had migraine-specific medication that you take at the onset since the '90s," Robinson says. "They generally come from a class of medications called triptans. They're only used for migraine and you hope to pull somebody out of it within the first hour or two after they take the pill. We've had a bunch of triptans now for decades."

Sometimes the triptans worked for migraine sufferers, sometimes they did not. And then, very recently, medical researchers began to learn more about a little devil of a protein called CGRP, or calcitonin gene related peptide.

For migraine sufferers, the source of all that pounding pain and life-altering debilitation had a name at last. The villain in the migraine world was unmasked and it was CGRP.

"Over the years," Robinson explains, "people who do migraine research for a living have known that there is an inflammatory protein called CGRP that is released by the nerve endings in the meninges, which is the covering around the brain. That's where we think migraine pain comes from. Even though it feels like it might be in your brain, the headache is caused by inflammation in the meninges. And that inflammation is mediated by this protein CGRP."

For physicians and researchers — not to mention the millions of people tormented by migraines — this understanding of the fiendish CGRP is really when the magic began to happen.

"CGRP is really the kicker," Robinson says. "We have the discovery of ways to block it that has just turned migraine treatments upside down in the last three years. They've known about CGRP for a long time, but we've never been able to safely and effectively block it until, again, about three years ago when the first of a number of new medicines came out, all of which act on CGRP. There are three new medicines you can use right at the onset of a headache to try to get rid of them. They're called CGRP receptor antagonists."

These discoveries have resulted in a whole new class of drugs that can be taken when a migraine first begins to show itself, but there is also a new line of preventative injections, Robinson explains, that have shown remarkable results.

"The new injectables are all once-a-month preventatives," he says. "You don't use them right at the onset. You take them in your leg or in your abdomen once a month for the purpose of migraine prevention, which is doable for most people, and the side effects are next to nothing. They're incredibly safe and incredibly well tolerated.

As with Botox, the aim of the CGRP blockers is to reduce the frequency of migraines.

"It's not like they take migraines away completely," Robinson says, "but if we can achieve a 50% reduction in headache frequency, patients are pretty happy. Doesn't seem like much if you go from 20 headaches a month down to 10 — that still seems like a lot of headaches. But the patients are ecstatic."

National studies show that 12 percent of the U.S. population suffer from migraines. When we polled our readers to learn more about local people who suffer the affliction, the response was heavy. Most of those who responded were more than happy to describe the misery of migraines, and not just the pain side of things.

Migraines are not your garden variety headaches. Many sufferers also experience partial blindness due to a visual disturbance known as "aura," the result of an electrical wave passing over the brain. Aura typically precedes the headache and lasts for up to an hour.

"It always starts small and subtle: a slight brightness that just obscures my vision," says Andrea Libby of Lewiston. "It's just like the hazy after-image we all experience when someone takes a flash photo. But it grows, until it fills half my field of vision. Then its edges begin to wiggle and flash, sometimes just at the edges, and sometimes it organizes itself into the swirling marquee of rainbow zigzags ..."

The technical name for aura, incidentally, is "scintillating scotoma." It's a term that sounds more lurid than frightening, yet for migraine suffers, an image of scotoma is instantly familiar.

"When patients are trying to describe their visual aura in the room with me," Robinson says, "I will do a google image search on the phrase 'scintillating scotoma' and then turn the screen to show the patients the gallery of results. I'm always amazed by how commonly the patients gravitate to one or more of those images."

In addition to those visual disturbances, some migraine sufferers lose the ability to speak coherently during an attack. For others, it's even more extreme.

"Some people have what's called hemiplegic migraine, where they actually become paralyzed on one side of their body," Robinson says. As part of their migraine process, they actually look like they've had a stroke. They're completely paralyzed on one side of their body."

Libby said she has been suffering migraines since she was 14 years old. In the beginning, it was mostly the aura that vexed her.

"As I got older they moved away from aura and just hurt," she says. "I don't know what my triggers are, but I know if I'm having a day where I can't get words to come out of my mouth correctly, then it's time to take 1,000 mg of Tylenol and as much Advil as I'm allowed to. Word-finding difficulties is my new aura. Then I get a headache that, speaking from first-hand experience, is more painful than childbirth."

Faith Whitney of Buckfield won't argue with that. She's been experiencing migraines since she was 15 years old. These days, she takes Rizatriptan — one of the abortive medicines Robinson referenced — when a headache first starts coming on, and then just hopes for the best.

"If I'm at work when they hit, I have to take 1,000-plus mg's of ibuprofen and sit in a dark room until I get my vision back," Whitney tells us. "Luckily my employer is sympathetic.

"Some people will never understand how debilitating they are or can be," Whitney says. "There will always be that one person that says your making it up. We are not. They will never understand how embarrassing it can be to end up in the ER asking for them to make it stop. Because it hurts that bad — you'd rather lose your head than suffer another one."

Like most migraine sufferers, Whitney has spent most of her life trying to track down her personal migraine triggers. As a result, she's come up with an extensive list of foods, smells and other things she tries to avoid: aged cheeses, car exhaust, garlic, perfumes and sandwich meats with nitrates.

According to Robinson, no definitive list of triggers has been produced. Red wine, chocolates and artificial sweeteners are frequent suspects, but nobody can say for sure what triggers a migraine, no matter how carefully they chart their diet and behavior.

"We always talk about trigger avoidance, which is the same now as it's always been," Robinson says. "You've got to try to eat at regular intervals, keep yourself hydrated, get regular amounts of sleep and avoid stress. But a migraine does what it wants, when it wants. You can have the perfect lifestyle and do everything right and still suffer."

Jerry Blais, a 74-year-old from Lewiston, spent years trying to identify his migraine triggers and feels like he had limited success.

"Chocolate was one trigger," he tells us. "Once I realized that chocolate was the biggest trigger, I steered away from it and then also realized that staying hydrated was another step in reducing their occurrence and severity."

Ronda Snyder, who reports getting migraines since she was 14 years old, declares her triggers to be dehydration, flashing lights and cheese.

She also has a kind of folksy remedy she swears by, which runs a little counter to Blais' advice.

"Sounds weird but it works," says the local woman. "Four Advil, chocolate and coffee — I can usually stop a full-fledged vomiting-inducing headache."

Pam Webber Carrier of Auburn began getting migraines relatively late in life — for most sufferers, the affliction begins in adolescence.

"I've been getting them since I was 33," she says. "I'm now in my 70s. At first they were monthly. Over the years, they come on for no reason. They are different each time. Some require total darkness, and quiet. Some cause nausea. All are severe pain. At first I could control them with avoidance of certain foods. Now I get them when the air pressure changes. They aren't fun!"

For some, migraines seem to be a seasonal affliction. There is no medical basis for that, as it happens, although experts concede that it may be related to allergies.

"I get them when spring comes calling every year," says Bonnie Waisanen of Auburn. "When I feel it coming, I take OTC (over the counter) migraine meds and need absolute silence, pitch blackness and an ice pack. Frozen peas on the back of my neck helps too. It's awful, but I'm fortunate that I only get maybe three a year. I know people who get them constantly and I can't even imagine."

As more is learned about migraines and their painful, crippling effects, they're getting more attention. And the advent of CGRP-blocking drugs is prompting medical experts to change the way they view them.

"Migraines are now being recognized as a disease," says Jennifer Williams McVige, a neurologist at Dent Neurologic Institute in Buffalo, N.Y., who specializes in adult headache and concussion, "and these medications focus on treating what we currently believe is the pathophysiology of migraines."

According to studies by the Migraine Research Foundation, every 10 seconds, someone in the U.S. goes to the emergency room complaining of head pain and approximately 1.2 million of those visits are for acute migraine attacks.

Migraines, according to the foundation, are now considered among the most debilitating illnesses in the world.

For Dr. Robinson and other researchers, there has never been a more satisfying time to be in the study of migraine headaches. With Botox and the CGRP-blocking drugs proving fruitful, more and more migraine sufferers are finding at least partial relief.

"It sounds very cliche," Robinson says, "but people will say to me, 'I have my life back.' They'll say those exact words. It's very gratifying."

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