Meet Your Guide: Eileen Zollinger

As your Bezzy Migraine guide, Eileen has a goal of providing education and support, while helping you know that you aren’t in this alone.

Eileen Zollinger has lived with migraine most of her life. As a young child, she got carsick a lot (a telltale sign of migraine or future migraine when you’re a kid) and she had her first real experience with it when she was only about 2 or 3 years old.

Then, she had migraine attacks off and on throughout high school, though at first, she thought the pain was related to her jaw.

“I needed to have jaw surgery and I had a lot of work done on my teeth and stuff,” she says. “But apparently, it was actually migraine.”

Despite these recurrent, debilitating headaches, her migraine didn’t formally get diagnosed until she was about 26 years old.

“I had just come out of a very stressful job, and I was in a great job that was much less stress, but it was almost like a stress letdown trigger for migraine,” she remembers. “I started having daily attacks — pretty much a nonstop attack that never went away.”

At first, doctors thought it was a sinus infection — a common misdiagnosis — and her doctor treated her with antibiotics before figuring out that what she was actually dealing with was chronic migraine.

“That was the beginning of about 18 years straight of having nonstop daily attacks,” she says.

Today, Eileen’s migraine is still considered chronic, but well controlled.

It took a long time for her to get to that place: She saw a neurologist and tried several medications, but nothing worked. Then, in 2014, she had a migrainous infarction, which is a stroke that occurs alongside a migraine attack.

It wasn’t until March 2015 that she was able to control her migraine with the help of a headache specialist, a migraine diet, regular exercise, and a good sleep schedule.

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Finding her way to the migraine community

Eileen has seven siblings. Most of them, she says, have experienced migraine at some point or another, though not as severely or as frequently.

“In a way, I was kind of blessed having had those people around me who had that experience because they were really supportive,” she says. “So many people don’t have anyone in their real lives who understand what’s going on in that way.”

For example, her sister-in-law also has migraine, which not only meant that she had someone around who understood what it was like, but also had help when it came to family responsibilities.

“The two of us really tried to help each other with the kids,” she says. “She would take mine when I was having a really bad attack and I would help her when I could.”

As a result, she didn’t initially look for a migraine community the way others might. However, after she finally got some help in March 2015, she experienced her first break in migraine — a break that lasted 22 days.

That, she says, is when she started reaching out to the migraine community.

“I wanted people to know that they can do more than just take medication for their migraine attacks,” she said. “I didn’t know if anybody else knew that because I had never heard of it. So I tried to find other people who were in the same boat.”

That is how Eileen came to start Migraine Strong, a site to share information about migraine disease for people who might feel hopeless because of their chronic migraine. Eventually, she was asked to be a guide for Bezzy Migraine.

“The term ‘guide’ is really applicable here because I have had a long history of experiencing migraine, and so I have a sort of vast array of different experiences with it,” she says. “Being able to talk with people about both my experience and something that we might have in common with experiences, I think, is perfect.”

You are not alone

As the Bezzy Migraine guide, Eileen welcomes new community members, keeps the conversation productive, and leads daily live discussions. She sees her role as a way to help people learn about what they’re experiencing and also make sure they know that they’re not alone.

“So many people aren’t really supported, whether it’s in the workplace or at home,” she says.

This is why the Bezzy Migraine community serves such an important role.

“How do you navigate those waters without somebody else who’s been there and done that — or at least somebody who is willing to listen to you and lend you a hand in trying to figure out how to manage it? I want those people to know that they’re not alone.”