My Decision to Start a New Migraine Treatment

Dawn of a New Era  for Migraine Treatment Options

In 2018, the dawn of a new era of care for migraine disease brought with it a newfound hope that words cannot easily describe. For decades I had lived with high frequency episodic migraine and struggled with an endless trail of medications that were either inappropriate, ineffective or intolerable. The emergence of new migraine treatment options restored dreams of getting my life back — finally! — and of becoming what I saw as a “functional person” in society. Little did I know the journey that still lay ahead of me — a journey that continues to this day, and one that shapes literally every day and every waking hour as I look for the best migraine medication and treatments to help manage this disease.

An Unexpected Rollercoaster

As the first CGRP inhibitors were approved on the market, I was one of the first in line to try them. Honestly, I went into it eyes wide open, fully aware that clinical trials do not include people such as myself with multiple comorbidities who are on wide cocktails of medications. I knew there would be unknowns. While hoping against hope for the best, the nagging voice in the back of my head reminded me that there were no certainties. The rollercoaster of the following 2.5 years was hard to manage, as my experience didn’t even come close to my hopes and expectations. Bombarded by worsening migraine, lack of efficacy and even some unexpected side effects, my gut reaction was: ENOUGH! I don’t want to be on this rollercoaster anymore. No more new treatments, no more unknowns, no more poking and prodding, no more doctors. Just no more!

If only migraine were that simple! The “migraine monster” would reappear day after day. It reminded me that I do not have the choice to say “no more,” especially if I want to hold onto hope and keep fighting. In some ways, the pandemic brought with it a welcome respite from making major decisions. Some migraine treatments are only available in office, so certain options were no longer accessible, including a new preventative treatment. However, 2020 also brought with it three new abortives. So I began my process of determining what I was and what I was not willing to do to try and manage my migraine attacks.

Desperation vs Skepticism

The result? Honestly, it did not take too long to realize that I am willing to try pretty much anything. Anything that brings with it a modicum of hope, that is, because it is hope that keeps me going on the darkest days. Hope that somewhere, something, anything, will make a difference! I discovered that there lies within me a peculiar balance of desperation and skepticism. Desperation to try new options and not give up; yet, skepticism that any of those new options will help. The desperation is very real, but the skepticism is more than understandable. Am I willing to accept that this is the way my life is going to be from now on? Do I have the courage to face the unknown and keep trying new things? It is with the thought of that desperation along with skepticism that I developed some ways to make decisions about new migraine treatment options.

If I do not try a new medication:

• How long is it going to be before the next new class of treatments is FDA approved?
• What are the potential side effects of the rescue meds I currently take?
• What will be the overall impact of chronic intractable migraine on my life?

If I do try a new medication:

• What would it be like if there were even a slight reduction in either frequency or severity of my migraine attacks?
• Do I have a doctor, or team of doctors, who will be able to help me with any intolerable or unexpected side effects?
• What message does this send to my children, future grandchildren, friends and colleagues about advocacy, courage and perseverance?

Refusing to Give Up: The Journey Goes On

It was with those questions and thoughts in mind that, yet again, I tried a new migraine medication this year. Hope, fear, desperation, skepticism, anxiety and so many more emotions crowded in, but overall a sense of courage. This is the courage that so many of us show on a daily basis as we refuse to give up.

• We refuse to accept that this is going to be the quality of our lives from now on.
• We refuse to allow this disease to take away our value and sense of self-worth.

I wish I could tell you that I found my miracle. Sadly, that does not appear to be so. However, I have new courage and am already looking to the future at what lies next on the horizon. Whatever those new options bring, I am willing to face the potential negative along with the potential positive. Every day is a statement that I cannot let migraine win in my life. This disease has taken away so much — I will NOT let it take away my hope!

Written by:
Shoshana Lipson
Hope for Migraine