How My Migraine Journey Started

"The journey of a thousand miles begins with one step." - Lao Tzu

I always think about this quote when starting something new. Since my journey with migraine began, I've logged some serious miles indeed! In my case, migraine started as the occasional 'bad headache' in my late teens, and over time it progressed. Like many of us, I treated it with the usual suspects: acetaminophen, ibuprofen, Aleve, and Excedrin. Using these on an occasional basis was fine. Many times, a couple of doses and some sleep silenced the headache. I knew very little about migraine at that time, and I wrote my other symptoms off as unrelated to the headache. As the frequency of the 'headaches' increased, I made the next stop on my journey.

What doctor did I first see when migraine started?

Scheduling my first doctor's visit opened the floodgates. I began the tedious process of trial and error. A general practitioner is a good resource for many issues, but I soon learned it was like trying to empty a tub with a bucket full of holes. Therapy regimens that were more potent versions of over-the-counter medicines had little effect. Very soon, the episodes lasted longer and were more intense. This cycle prompted more medication use. I slipped into a cycle of medication overuse headaches, which compounded my condition. This led me to the next stop on the journey.

When did I switch to a headache specialist?

I had to find a doctor who specialized in headache disorders. At this point, I had become a research assistant to my wife. She was my most valuable advocate and accompanied me on all my doctor visits. Often, my head was in extreme pain, and my brain was not working well enough for me to explain what I was experiencing to the doctors. I found a headache specialist within 90 minutes of my home. The battery of tests began immediately. I was desperate for relief, and I endured CT scans, MRIs, lumbar punctures, X-rays,  and all types of blood tests. Doctor visits became my life for several weeks. I finally received a diagnosis of intractable migraine along with new daily persistent headache (NDPH).

How did my treatment plan change?

Armed with my shiny new diagnosis, I continued the journey. The use of medications specific to migraine attacks were used. Some had no effect, some helped mildly, and others made me a zombie. Ironically, the medicines that worked the best often had the most severe side effects for me. We targeted the migraine type of headache over NDPH because, of the two, it was more treatable. Treatments went on for months. We tried different therapy regimens for 3 to 6 months at a time unless the side effects were too disruptive to my body. I'm one of those people who say, "I've tried everything," very matter-of-factly, but honestly, there are hundreds upon hundreds of medications for migraine disease. Failed therapies and medications littered the pathway along my journey.

What treatments did I try?

Eventually, working with my specialist, we found some combination therapies that helped. The calcitonin gene-related peptide inhibitors (CGRP) have been lifesavers. I am currently receiving Vyepti infusions every three months. I combine this medication with magnesium, vitamin D, CoQ10, and B2 as my current preventative therapy regimen. I am also using Nurtec and a Nerivio device for breakthrough attacks beyond my tolerance levels. Changing therapy regimens is always stressful for me, but I understand the purpose and need for it when the current therapy is no longer working well for me. Even with the respite of effective treatment, my journey continues.

What does my future look like?

Staying the course is essential. I walk out this journey based on a foundation of resiliency and perseverance. I use the history of my journey as a knowledge base to propel me into the future. I always try to look to the future with hope and positivity. Sometimes, it's challenging, but it's worth it for me. I try to be an encouragement to those who are struggling with migraine and all that comes along with it. I understand this silent and complex disease and how it impacts our lives. Please share your questions and experiences with me.