Norton Healthcare specialist helps relieve patient’s 15-year cluster headache symptoms

A headache patient’s Norton Neuroscience Institute doctor helped him find relief quickly after years of pain, inspiring a unique thank-you.

Kevin Maynard’s chronic headaches date back a decade and a half.

The pain would hit suddenly behind his right eye, last for roughly 72 hours and then begin to subside. Five to six months later, the headaches would return with a vengeance.

It was like clockwork, yet he couldn’t explain why.

“I started noticing a pattern, and it was a time-based pattern,” Kevin said.

But Kevin’s clock was broken, because it started to speed up.

Five to six months between headaches shrunk to three months. That number dwindled even further. Eventually, the 72-hour, behind-the-eye headaches would return every 32 to 36 days. The pain became debilitating. Kevin started documenting his symptoms religiously.

“People throw phrases around and say it’s life-changing, and it was,” Kevin said. “I could be in the middle of family vacation, a trip, some important birthday or anniversary — and when these things hit it just ruins whatever moment you’re in. And that part was difficult. It really was life-changing, because they would ruin my life for a period of time.”

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Kevin tried his luck with several physicians. He was misdiagnosed with migraine and given medication for the suspected condition. Several treatments never relieved his symptoms. He was feeling like he would never find a legitimate answer.

Then, his sister-in-law suggested he talk to Mandy J. Whitt, M.D, headache specialist at Norton Neuroscience Institute.

“It was the first conversation,” Kevin said. “I’m explaining to her [how I feel], and I was almost just, sort of, not exasperated, but just going through it. And I’m telling her, ‘I’ve been marking a calendar because no one believes me, and I have these three-day stretches marked on my calendar going back a year and a half, and they’re on this frequency, and there are no triggers.’ And she then took over the conversation and started taking the words out of my mouth about what it felt like when they hit and how they acted, and I started getting this glimmer of hope like, ‘Yes!’”

Dr. Whitt listened to Kevin’s story and diagnosed him with cluster headache, a rare condition that affects just 1 in every 1,000 people. The condition is known to bring painful attacks over a period of time, so much so that they are sometimes called “suicide headaches.”

Dr. Whitt knew she had to act quickly, using the notes Kevin had been taking to craft her plan.

“My staff knows if it is a true cluster patient, we are not going to delay,” Dr. Whitt said. “We are trying to get them out of pain as soon as possible and get them taken care of. And so, I will throw everything I have at them as quickly as I can to get them out of that attack and get them back to functioning.”

Over the course of three years, she’s collaborated with Kevin to find the perfect treatment for him, eventually landing on the drug Emgality, a monoclonal antibody treatment that had drastic and life-changing results.

“She was the first physician who really listened to what was going on,” Kevin said. “She just pulled out all the stops. She said, ‘Look, we will do whatever it takes [to make you feel better].’ It was good because she partnered with me. [She said], ‘Here’s what we’re going to do and here’s how we’re going to attack it,’ and that partnership just meant the world to me, because I knew she was engaged. Just having that level of care and attention and partnership was invaluable.”

The medication has left him headache-free for roughly 18 months, a dramatic improvement from where he was just a few years ago.

With his headaches mostly behind him, Kevin was able to focus his attention on his latest hobby, woodworking. And he knew he had to craft something special for the person who gave him his life back. He made by hand a small rocking horse for Dr. Whitt’s newborn child, as a thank-you for her compassion and care.

“It’s more than [a toy] for me,” Kevin said. “I was trying to just show her how much I appreciated her commitment to figuring out what was going on with me.”

“Whenever I hear that I get somebody out of cluster, that itself is Christmas to me,” Dr. Whitt said. “And to hear that the attacks are less, my staff knows I cheer. I almost feel like I need a bell to ring. And then he brought me that beautiful rocking horse — that was the cherry on top.”

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