Meet LindsayTell us about your background as a Ph.D and your career as a migraine strategist.
My whole life I was frustrated by the fact that no one in medicine could help me. I developed chronic daily migraine as a toddler and complex regional pain syndrome not many years later, yet my doctors thought I had sinus headaches until I was seventeen. Each time I asked what was wrong or why I was in so much pain (why my bones were burning, why I was dizzy, etc.), I felt I was met with the infamous “they”. “They don’t know why”, “they don’t have medicines for these things” was everyone’s answer to me as a child. I knew early-on I wanted to be a part of this nebulous group known as “they”, since as far as I could tell, this was the group of people who could make a difference.
As I grew up, I thought this group known as “they” seemed to be made up of people doing medical research and a whole lot more, so I started by getting a PhD in Health Sciences. I now use my education and my experience as a survivor of chronic daily migraine in my work as a Migraine Strategist. I work for a month or more at a time one-on-one with people who experience migraine to help them develop a brick wall of personalized mental, physical, emotional, medication, and lifestyle strategies to keep migraine out of their lives. I am also a migraine medical writer and the host of Heads Up: The Weekly Podcast of the National Headache Foundation.
What are you looking forward to for the future of the migraine community?
I recently did a podcast series on the 13 migraine medications that are going to be available in the next year and a half. This is hugely exciting to me. Let me rephrase that – it blows my mind!! I waited until I was 17 to experience the first medicine for acute migraine and I was 30 before I found one that was helpful to me as a preventive. Now we suddenly have 13 medicines coming out within a year and a half. This is amazing for us.
How has your life changed due to migraine?
That is a difficult question to answer because I did not really know life without migraine until I was 30 years old. I have no idea where I would be now if my life was not shaped by migraine and chronic pain. I can say it has definitely made me a very strong person. I’m the kind of person where if the plane is going to crash I’m thinking OK, well that’s an easy one, at least it will be quick and we won’t spend years dying of pain.
I can say that I became significantly better when I was 30 and that after a period of time of feeling shocked and numb (physically and mentally), my life changed drastically. I quit working as an academic medical researcher and I now work full-time in the field of migraine.
On a personal level, I got a divorce after 21 years of marriage. My ex-husband and I could not make our relationship work anymore once I was healthy. I had always been sick and he was the caretaker. There was a honeymoon period for us when I got well, but then, we didn’t seem to connect anymore.
You have two children that also have migraine, how do you manage living with migraine yourself and also being a caretaker?
I am thankful every day that my children do not experience migraine to the extent that I did or that I do even now, but yes my children have experienced it. They seem very mature and know what to do from their experience watching me and from reading my graphic novel for kids with migraine: Super Zoe the Migraine Hero. They generally lay down with the book and a glass of water then proceed through the process of getting better along with Super Zoe.
My son is 6 and he has a LEGO dragon that he claims gets a migraine occasionally. He brings it a water bottle and reads the book to it.
Whenever anyone in the house has a migraine we declare a movie party, snuggle under the covers and watch one of our favorite superhero movies.
What piece of advice can you give for others living with migraine?
Our top priority is to keep the migraine disorder from stealing our strength and our vision. Many people do not realize that the primary job of migraine is to steal your strength.
For those of us who are chronic, our task during pain-free or lower pain intervals is to build up mental, physical, and emotional strength. The stronger we are the harder it will be to tear us down during a severe or long-term migraine episode.
This isn’t a joke.
Surround yourself with people who see how awesome you are, who see the best in you. Learn to ignore those who don’t. It wants your self-esteem, it wants your goals, your happiness. You have to battle harder in your mind than in your body. Where your thoughts go your health will eventually follow.