Ambassador Leah Preps for the Unpredictable

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Fast facts

• Name and username on Bezzy: Leah M. (LeahBEE on Bezzy Migraine)
• Location: Connecticut
• Year diagnosed: 2004
• Bezzy member since: 2021
• Describe yourself in 3 words: curious, meticulous, empathetic
• Go-to healthy snack: carrots
• Your happy place: anywhere there are woods and mountains
• Advice to your younger self: Don’t take things so seriously.
• Person who inspires you the most: My mom. She deals with a lot of chronic health conditions and keeps on going.
• Hobby: Gardening — I have too many plants, but right now, my favorite is milkweed because I love seeing monarch butterflies.
• Hidden talent: archery
• Song that makes you smile: “Always Look on the Bright Side of Life” from Monty Python
• Favorite movies: “The Lord of the Rings” trilogy
• Pets: my beagle, Luke, and my parents’ golden retrievers, Penny and Buck

Q&A with Leah

When were you diagnosed and what were your first symptoms?

Both of my parents have migraine, so I was aware of it. I get the visual aura and that was the very first thing that I noticed.

I realized recently that my first migraine probably occurred when I was in 4th grade. I didn’t really know what I was experiencing other than tunnel vision and feeling crummy. I didn’t have an actual diagnosis at that point.

In 2004, it became clear what was going on. But I didn’t have a specialist at that point, just a pediatrician. I was 14, and it was the summer before 9th grade.

It was an informal diagnosis, but I was having classic migraine symptoms. I think if you were to ask someone what comes to mind when they think of migraine, they would say tunnel vision, aura, head pain, fatigue, and light sensitivity. That’s pretty much every migraine for me.

Every migraine attack for me includes visual aura, head pain, and then fatigue and light sensitivity. That’s what happened the first time, and I had a pretty good idea of what was going on because I knew about my parents’ experiences. It wasn’t a complete shock.

What is the aura like for you?

My aura is geometric shapes. It usually starts as this one small spot, and I’ll find myself tracking it around the room. I’ll usually look at something with text on it, and I’ll find that I can’t read part of the words or it’s distorted. That’s when I know that it’s actually migraine and not just some passing vision issue.

It usually expands out in a curve from there, and then I get the geometric shapes. It diffuses into nothing after about 45 minutes. Then the head pain also ends.

When does the head pain start?

The head pain varies and sometimes it’s more pressure than pain. Sometimes I get very distinct throbbing pain but on one side. I’ve had some really nasty ones, and I’ve had some in which there’s very little pain.

What’s a typical day in your life like?

I like to start my days off slow. I used to rush out the door but I’ve tried to slow down in recent years.

I usually get up and take some time to do a little meditation, deep breathing, yoga, and stretching. I also do physical therapy exercises for my neck.

Then I go and feed my dog, let him out, have my breakfast, and get ready for the day. I might do low-key activities like go to the garden or go on a walk.

I mostly work from home now, so I have a flexible day. I’ll do my work, and later I’ll do various volunteer activities.

I volunteer with the Master Gardener program at the University of Connecticut, so sometimes I’ll have garden-related activities. I volunteer for the ACA, the Adult Congenital Heart Association. I’ll also go on the Bezzy app and check in to see if there are any messages that I need to reply to.

I play with my dog and build in some downtime, so I’m not constantly working and turning through task after task.

In the evening I try to wind things down gently. I’ll turn the lights down. I try not to do too much with screens, but that’s kind of hard. Screens make it too easy to stay up late.

How do you balance everyday tasks with migraine?

My migraine experience is episodic and very unpredictable.

I’ve gone 6 years with nothing, and then boom out of the blue there they are. I don’t think about it every day, but it’s worked into my day-to-day activities. I take supplements as part of the more holistic side of management.

My goal is to try to keep the migraine from happening. I try to manage my stress, exercise, drink enough water, and eat healthy foods.

When I do have a migraine attack, everything stops. I can’t see for an hour or so. I deal with that in the moment with medication and a dark room.

Once the initial part of it has passed, I assess any tasks that I have to shuffle to another day. My focus shifts to just being kind to myself and not pushing too hard if I don’t have to.

Sometimes things have to get done, but I try to block out those 2 hours to not do anything, so I don’t get into a cycle of the migraine attack reoccurring, which I’ve had happen.

Is there anything you wish you knew right after your diagnosis?

I wish I knew that there are specialists who focus entirely on migraine and other headache disorders. I didn’t see anyone like that until I was in college, and it made a huge difference. I got a migraine-specific medication and suggestions that are targeted at dealing with migraine.

What I’ve experienced with other doctors is that they might know some things, but it’s just not the same as seeing someone who has focused on this particular condition. So I wish I’d gone to a specialist sooner.

When I switched to a specialist, I felt like I had more options and agency to deal with the symptoms, and there were things that I could do to help lessen the frequency.

I would also say not to push through. It’s OK to take a break and give your body time to bounce back.

What’s your advice for someone who’s just starting treatment?

If it’s possible to see a specialist, do it.

I’d also suggest two things: One is to ask a lot of questions and make sure you understand what your migraine is, because they’re not all the same. I have episodic migraine with aura. So do both my parents, but their experiences are vastly different from mine.

Second, if possible, go to someone who you feel comfortable working with and who listens to your concerns. It’s OK to say goodbye to a doctor if it’s not a good fit.

I got really lucky with my doctor, but I know some people have to go through a few before they find the right person.

What’s been the biggest challenge of living with migraine?

The unpredictability. Even if I’m not actively thinking about it, it’s always there in the back of my mind. I need a backup plan if it happens, and it’s always when I’m least expecting it.

For instance, if I’m driving somewhere and I get an attack, I need a plan for how to handle it. That’s actually something I got from being involved with Bezzy.

Now I have a migraine kit with essentials to keep me prepared for when they show up. I can take the kit with me in the car and have a plan for when I’m driving alone. That takes away a lot of the worry.

What’s in your kit?

I have phone numbers readily accessible. I don’t lose total vision quickly, so I have some time to call family or a friend who might be available. I always have a backup like the Uber app.

I keep medication with me. I keep extra sunglasses and migraine-specific glasses everywhere — in my purse, in my car, at work, in my nightstand.

I have this little card that I can hand to someone. It says, “I have migraine, and here’s what you need to know.” I have all my medical information on the phone and a physical copy so it’s easily accessible. I haven’t had to actually use that yet, but it’s nice to have just in case.

What helps you get through the bad days?

Sunglasses, a dark cozy room, and ice packs go a long way.

As long as I’ve done everything that I can, it helps me stress out about it less. It’s so easy to focus on, “What if there’s another one, and when is it going to end?” I’ve found the more relaxed I am, the less likely I’m going to end up in a cycle of attacks.

Is there anything you wish your friends and family understood about migraine?

Since both my parents have migraine, I’ve never really had to explain anything to them.

If I had a friend or family member who didn’t quite get it, I’d want them to know that oft-repeated refrain, “It’s more than just a headache.” For some people, it’s not even a headache, and it’s not something that can be worked through. Sometimes you really do have to just stop.

No matter what I do in the rest of my life to manage it, there’s always going to be one that sneaks through. I’ve gone 6 years with nothing, and then they came back. My mom went 10 years with nothing and then had a migraine attack. The possibility is always there. It’s chronic, and it’s lifelong.

What led you to become involved with Bezzy?

I had a migraine attack show up out of nowhere. It was one of the first since my long stretch of nothing. I figured I needed to see what else was out there, and I just happened to run across Bezzy. I thought it was great, so I joined and started interacting with people.

I got asked to be an ambassador, and I’ve been doing that ever since. It’s been really good to meet other people who just “get it,” even if their migraine is different.

If you need to vent, they all understand. They’ve all been there. It’s also nice to be able to share my experiences with people who’ve had a similar type of migraine experience.

I’ve learned a lot, not just about different types of migraine, but things that I can take to my specialist. I’ve had some success there, too. It’s also just a really nice group of people.