Living on the Edge: My Journey with the Rarest Form of Migraine

by Victoria (Tori) Martinez

It was supposed to be a simple, joyful day. My daughter and I had planned to grab lunch together, just the two of us enjoying some much-needed quality time. We were in the car chatting like usual when suddenly something terrifying happened.

My words stopped coming. I could think clearly, but couldn't speak, my mouth simply would not form the words. I was instantly terrified. My daughter, who is a nurse, immediately noticed something was wrong. I remember the way her eyes locked on mine, concerned, focused, yet calm all at once. She quickly performed an assessment on me right there in the passenger seat.

Then she said the words I'll never forget, “Mom I think you're having a stroke, I'm taking you to the ER.”

Without hesitation she drove me straight to the emergency room. In our rural area, that was not close by. In the ER, doctors told me I had experienced a TIA (Transient Ischemic Attack), often called a mini stroke (I found out later, that they were wrong). In that moment I was overwhelmed. I remember thinking, what does this mean, and will this happen again?

A New Diagnosis

After that, things happened quickly. I saw specialists, had lots of tests, got lots of scans, and eventually received a diagnosis from a neurologist of migraines with aura and hemiplegic migraines. To say that this was a life changing moment is an understatement. The fact that I had never heard of auras or hemiplegic migraines just made it all the more confusing. The neurologist I had at the time really didn't do much explaining and I wasn't sure I believed what she was saying anyway. Migraines seemed too simplistic of an explanation for what I had experienced. Since then, I've seen other doctors and other specialists who have confirmed that diagnosis.

It's difficult to explain in a few sentences how life-altering a moment like that can be. And as overwhelming as that was, I still wasn't prepared for the pain, medication side effects and many changes that were to come. If you or someone you know has received a new diagnosis, there is hope, keep reading.

What Are Migraines with Aura?

Migraines with aura are more than just a bad headache. Since that's what my mother had experienced, imagining something different, something worse, was not easy for me. Migraines are neurological events that can cause sensory changes, things like seeing flashes of light, zigzag patterns, or experiencing blind spots in your vision. It can also cause tingling in your skin or ringing in your ears. For some people aura is a warning sign that head pain is coming. For others like me, auras can be more serious and mimic more serious conditions like a stroke, making it both frightening and life altering.

What Are Hemiplegic Migraines?

Hemiplegic migraines are one of the rarest and most severe types of migraine. They can cause temporary weakness or paralysis on one side of the body, sometimes so severe it looks exactly like a stroke. I'll leave it to your imagination as to what that feels like. Symptoms can include:

·       one sided weakness or numbness

·       speech difficulties

·       visual disturbances

·       confusion

·       disorientation

·       brain fog

·       dizziness

·       and severe head pain

Because the symptoms overlap with stroke, hemiplegic migraines often lead to expensive ER visits and extensive testing to rule out life threatening conditions.

Living With Uncertainty

The emotional toll of chronic conditions is heavy on yourself and on family. Things become a little easier when you accept this new life and adapt to it, learn what your triggers are, learn to better manage stress, to listen to your body in ways you never had to before. There's also the mental weight of explaining a rare condition to friends, family, coworkers, and even health care providers who have never seen it before like the ER Doctor who originally saw me. I once had an attack during physical therapy and the therapist wanted to call an ambulance.

Some days it feels like living on the edge of a Cliff, never knowing when the ground might shift beneath me, never knowing what trigger might come along that could push me over. The lights might be too bright, or there might be too much noise, or all of a sudden flashing lights during a movie could bring on an attack. It's often things out of my control that are the most terrifying and unpredictable.

Why I'm Sharing This

I'm sharing my story for two reasons. One is to raise awareness, because it's such a rare neurological condition that not very many people know about it. In fact, only 0.1% of the population around the world who have migraines, have the subtype hemiplegic migraines. The second reason is to connect with others who do have hemiplegic migraines.

When I was first diagnosed, I tried to do research on this disease (because of my college research background). I looked on the social media apps trying to find someone who was like me, who was experiencing the things that I was experiencing. I tried to find a community that could relate to what I was going through. I did find a couple of people on TikTok who were talking about this, but it took me a long time just to find them. I don't want others with this condition to feel as alone as I did.

Hope for the future

Living with hemiplegic migraines means navigating fear, unpredictability, and the unknown. But it also means I've learned to appreciate the moments in between. Those moments between pain and peace. I live for those ordinary days that are symptom free, which seem to come less often nowadays.

Today I create art, write poetry, write blog posts, and do public speaking about how creativity helps us cope with and find healing in the midst of chronic illness, chronic pain, and disability. For me healing isn't about going back to who I was before I got sick. Healing is about learning to move forward differently. My illnesses have been both my challenge and my muse.

Chronic conditions are the teacher we wish we never had but nevertheless teach us to appreciate what matters most in life. So, I don't take the good moments for granted anymore. And if you're reading this while you're fighting your own health battle, I hope you know this: you are stronger than you think, and you don't have to fight your chronic condition alone. We're in this together!

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This information shared here is based on personal experience and perspectives. It is not intended to be medical advice, diagnosis, or treatment. Please consult a qualified health care provider for guidance tailored to your individual needs.