Chronic Migraine Awareness

By Lily Rizzoli, migraine patient since the age of twelve.

Chronic Migraine Awareness Inc would like to thank Lily for sharing her story with us.

Hi! I’m Lily.
As a teen diagnosed with migraine disease, and now living with it as an adult in my early 20s, I’m passionate about sharing my experiences, talking about the importance of early diagnosis and treatment, and helping others live fulfilling lives while navigating this challenging condition. Here are some of my thoughts and experiences.

Adolescence is a time in life when your body is going through hormonal changes and you’re trying to fit in with your peers. Layering migraine management on top of everything else can be stressful. And, according to research, psychosocial factors such as stress and anxiety can trigger or worsen migraine disease in adolescents, creating an awful cycle between triggers and attacks.

If you’re a teenager dealing with migraines or know someone who is, this post is for you. Let’s clear up some common misconceptions about migraines that can make them even harder to deal with.

Misconception #1: Migraine in teens and adolescents isn’t common
Over 100 million children and adolescents worldwide have been diagnosed with migraine and it’s more common in females than males. That number represents about 10% of all people living with migraine. So, the stats tell us migraine in adolescents is significant, but why the misconception?

One reason is because migraine can manifest differently in each person. This makes it hard to recognize and explain what’s happening. For example, one person might describe the onset of a migraine as a fog and the pain might start in one area of the head and move to another. In my case, I felt like there was a veil over my head, then I had intense pain in my jaw, followed by nausea and vomiting and culminating in pain around my head. With symptoms all over the board, it’s harder to determine the cause.
For example, nausea and vomiting or body aches could be the flu, and feeling foggy can be from poor diet or lack of sleep. All of these factors make it harder to zero in on the diagnosis.

Communicating these varied symptoms to parents or doctors can be daunting. Fortunately for me, my father is a headache specialist, so he understood what was happening and was able to diagnose my migraine and quickly got me the help I needed.

If you’re dealing with migraine, keeping a log of your symptoms can be incredibly helpful. This log can help your parents and doctors see patterns and better understand what you’re experiencing. This can lead to a faster diagnosis and safe intervention which are essential to minimize the negative impact on your quality of life, and may be important in preventing long-term disability.

Misconception #2: Migraine is just a bad headache
For anyone who has experienced a migraine, you know it’s different from a headache, can last much longer, and has a negative impact on quality of life. This misconception extends to social circles and can make a migraine patient question themselves. Friends or classmates might dismiss your pain or symptoms and say things like “you just have
low pain tolerance” or “you’re just trying to get out of class.” In my experience, these statements can be hurtful, and it’s disheartening when others don’t understand what’s truly happening. As a teen, it’s hard enough trying to fit in without the added stress of being misunderstood.

In high school, kids are looking forward to dances, sporting events, and other school activities. Plus, it’s a critical time for learning and preparing for college. More than just a bad headache, migraine can disrupt these activities. Missing school can lead to falling behind in studies and poor grades, while missing social activities can have a negative impact on mental health. I missed my very first homecoming dance due to a migraine, and I was devastated. It’s important to understand a migraine isn’t just a headache. It’s a complex medical condition that can affect every aspect of your life and needs to be properly treated and controlled to lessen the impact on teens and set them up for success as they transition into adults.

Misconception #3: Migraine can just be treated with lifestyle changes
It’s true that lifestyle changes can help prevent migraine and control the severity of attacks, but it’s often not enough on its own. Effective migraine management can require a holistic approach that combines lifestyle changes, non-drug treatments, and over-the-counter (OTC) or prescription drug treatments.

In my case, I do all three. For example, lifestyle changes might include getting more sleep, drinking extra water, taking time for meditation and relaxation, and avoiding my triggers. I have found using a remote electrical neuromodulation (REN) wearable treatment at the first sign of symptoms can halt a migraine. Other times, the REN wearable plus an over-the-counter or prescription medicine might be necessary.

I personally use the Nerivio (REN) wearable, which is FDA-cleared for people ages 12 and older. It’s small enough to fit in a purse or backpack, and since it’s worn on the upper arm, it’s also discreet. At the first sign of a migraine attack, I just put on my Nerivio and start the 45 minute treatment from the app on my phone. It stimulates the nerves in the upper arm to naturally harness the brain’s power to control pain.

Plus, sometimes just having a non-disruptive treatment like Nerivio close by alleviates anxiety or worry that a migraine might occur.

By using a combination of treatments, I’ve been able to reduce the amount of medication I need, which helps me avoid the side effects or medication overuse headaches (MOH). Remember, everyone’s migraine triggers and effective treatments can vary, so it’s important to find what works best for you.

Steps You Can Take to Help
I am lucky to have a dad who knew what was happening from the start. Many parents
have a harder time understanding what their teen might be going through or they don’t know where to begin. It can be difficult to understand severity, and adolescents are likely just as scared at the beginning when they don’t know what’s happening either. Listening and logging symptoms, frequency, and pain levels will help parents and teens advocate with their healthcare provider, neurologist, or at the emergency room. Taking these steps can lead to a quicker diagnosis and more effective treatment plan to limit the disease’s progression.

Migraines are challenging, but they don’t have to define you. By understanding and addressing these misconceptions, we can create a more supportive and empathetic environment for everyone who deals with them.

If you’re a teen struggling with migraines, know that it’s okay to ask for help and to talk about your experience. You’re not alone, and there are people who understand what you’re going through.

Let’s continue to spread awareness and support each other. Together, we can make living with migraine easier for everyone.

About Lily Rizzoli
Lily Rizzoli was diagnosed with migraine disease at the age of 12. She is a recent graduate of Hamilton College and has a degree in Literature with a minor in Italian. Lily is currently 22 years old, working and living her best life in New York City.

If you would like to share your story with us, please email it to kristen@cmaware.org