From Brain Tumors to Migraines and Everything in Between
I was late for my first meeting of the acoustic neuroma brain tumor survivors’ group. This meant strange faces would turn towards me, but I couldn’t go back now. As it was, only a few looked round as I walked in, all offering smiles—a relief. The rest were focused on what we were here for sharing personal experiences, talking and listening, which seemed like a good sign. I placed my offering of cookies on the refreshments table and sat.
Part of my nervousness in coming here was about feeling like I didn’t belong. I didn’t have an acoustic neuroma, and I was a man. Not that there weren’t men here. It’s just that my growth had been a CPA meningioma and it’s mostly women who get those.
I joined the circle in time to be the next to speak. I told them who I was, that my tumor had been golf-ball sized and that I don’t even play golf (because that sometimes gets a laugh) and I told them I felt lucky to live so close to such wonderful neurosurgeons and that now I had a new job—symptoms introspection. This means I watch my new symptoms come and go and feel certain that some of them have nothing to do with the surgery at all. A woman with longhair told me it can be hard to know what causes what, and a man with glasses took notes as she talked.
Then I listened as each person around the table shared what had happened to them. A man called Ben told us how they’d had to take out some of the bone above his ear to get at the tumor and now he got headaches every time his head touched something. It could be a car seat headrest or someone’s shoulder, the result was the same—nasty sinus headache, and even when he remembered not to do this, he still had pain from the scar.
Sophia was unlucky enough to get cluster headaches even before the surgery. Now she got them intermittently and felt kind of like a barometer. When the barometric pressure changed it brought the pain back. “It starts here and goes here,” she said, tracing its route around her skull.
Lara sounded Eastern European and unbalanced, by which I mean to say that her tumor was still waiting to be removed and it affected her balance. She could easily become giddy now, and when she wasn’t feeling unsteady on her feet she was buried in her bedsheets, wincing her way through weeks-long headaches.
Ron had been through surgery and radiation. He was white-haired and sounded the least troubled of us. He didn’t get headaches, and the last 8 years had been fine apart from double vision when he felt tired. Good for him.
Steve was cheerful despite awful tinnitus in his left ear and 80% hearing loss on that side. Balance trouble and migraines that lasted for hours were his main worries.
Next, a small lady with large-framed glasses told us that she’d been through a couple of radiation treatments and still ended up having a weird turn at work that turned out to be hydrocephalus—fluid in the skull caused by one of those treatments. They caught it, but in the aftermath, she’d succumbed to depression, which she claimed was worse than the surgery. Meditation and yoga helped though.
Now it was the turn of our guest speaker, Dr. Mia Mening, Director of Headache Services at NYU Langone. There are very few headache specialists in the country—1 to every 72000 migraine sufferers—so we were lucky to share her time.
She told us that they divide headaches into primary and secondary types and lots of things can cause them. Close to 90% are considered primary—and they think these are caused by abnormal electrical activities in the brain, rather than things like tumors.
Those ‘abnormal activities’ sounded interesting, so I made a note. The facts continued…
Migraine is classed as a primary headache, most people who get them are misdiagnosed and 12 percent of the population live with them—36 million Americans, most of whom are untreated. I wondered how we can treat something with causes that are so vague.
She described the symptoms and you probably know them already—light sensitivity, a throbbing, pulsating headache that's usually on one side of the head. The diagnostic criteria are 4-5 episodes per month with each one lasting 4-72 hours. They need to be bad enough to impair regular activities, decrease your appetite and sometimes cause nausea and vomiting but those aren’t essential for the final verdict.
If you're lucky enough to see a specialist, they take a full history and want to know things like the time a headache occurs. 4 pm means it could be caffeine withdrawal. On waking could mean it's a tumor. Triggers are important too. Things like dehydration, eating at a different time from the usual, sleep deprivation, and stress should all be considered when you’re looking for causes.
Red flags like persistent unilateral pain usually trigger an MRI request, but most people don’t have these and so don’t get them. And even if they did, scanning doesn’t always find the cause. Still, I couldn’t help thinking that it would be better to scan everyone, just in case.
Opioids should be avoided as they eventually make headaches worse, and Excedrin has too much caffeine, so it does the same.
Triptan does work, is safer than Tylenol, but is prescription only, even though it’s available over the counter in the UK, Germany, and Brazil.
I was surprised to find that Botox can actually be used for severe cluster headaches. This was discovered when people who got shots for their wrinkles said it helped their headaches too, so research began, and here we are, with a treatment whose overuse stops you smiling, but which gives you something to smile about!
CGRPs are a new class of medication that seems promising, but long-term safety is unknown. For this reason, the doctor said she was cautious, which I found reassuring. Some physicians act like they run a candy store, shoveling sweets into a bag and sending you on your way. This one was more circumspect, so we should probably consider having her cloned.
Still, I expressed my concern that patients would effectively be guinea-pigs in this long-term experiment, and she could not disagree, but reasoned that if something helps and it’s all we have, then what else can you do?
She has a point. The science of headaches is not as well understood as the science of say, heart transplants. It’s still early days for this field, and the best that the health industry can do at any time is…the best it can do. That’s not to say that it is always doing its best though. There’s as much art as science that goes into finding a treatment that suits someone, and perhaps that’s where the industry could improve things, with more focus on the art of listening to the patient.
There’s another avenue that doesn't rely completely on big Pharma too. Treatments like cognitive therapy, bio feedback and progressive muscle relaxation have been effective when used alongside medication. They’re safe, they work, and they make life better, even if you don’t get headaches. CBT helps to reduce stress, and the added benefits of lower cortisol—the stress hormone—are good news for everybody’s bodies. CBT even causes structural changes in the brain; they’re visible on MRI scans.
The doctor lamented that in New York, the psychologists who deliver these relatively cheap and effective therapies don’t take insurance. As few as 12 sessions could bring extra relief to migraine sufferers, and their only side effects seem to be happier existence. Unfortunately, the time and money they take put half of patients off.
Perhaps that means that to really help migraine sufferers in groups like these, there should be a permanent agenda item—“How did your CBT go this week?”