Finding Answers: My Journey with Migraine and Rare Headache Disorders

I was in my mid-20s when I was hit by my first migraine. At the time—this was in the 1990s—there wasn't a lot of information regarding why they happen or how it all begins. I underwent multiple tests and was prescribed numerous medications to see if they would control the pain. None of them helped until I saw a neurologist who actually found something in my neck and expressed what was found.

The terrifying onset of trigeminal neuralgia

Years later, I found my triggers and what helped with the pain, however, in 2017 I was working and got hit with so much pain on the right side of my head that I thought I was having a stroke. I went to the hospital and found out that I was experiencing the excruciating pain of trigeminal neuralgia, which is a rare condition.

I was initially sent to a doctor who literally said he couldn't help me and recommended another specialist. I have now been with this current neurologist for seven years.

Managing hemicrania continua and cluster headaches

Through this specialist, I learned that I live with hemicrania continua, which is also a rare headache disorder, as well as cluster headaches. Living with these conditions means navigating a complex part of the migraine family.

I have been on countless medications, including both traditional pharmaceuticals and holistic treatments. Over the years, I have learned that finding the right care team is essential when dealing with rare headache disorders.

The power of community and support

Navigating these rare headache disorders can feel isolating, but I am grateful that I have found groups and other people who have been a huge support for me. Connecting with others who understand the reality of chronic, rare pain has made all the difference in my journey.