Phases of the journey
Every migraineur has a unique story. Our journey of life with migraine can be described as a process of growing awareness. Each step along the way matters. While there really is no destination, there are common phases. Many phases overlap or repeat along the way. Take a look at these possibilities, then tell us which ones are a part of your story. Feel free to add other phases you think are appropriate!
Many patients distinctly remember (and long for!) life before migraine. In many cases, pre-migraine life is one of blissful ignorance. During this phase of life, we do not know much about migraine because it hasn’t yet impacted us. We may have a vague understanding based on the experiences of friends and relatives. It is just as likely that out of ignorance, we embrace stigmatizing myths.
Then one day, everything changes. Our genetic code flips on that migraine switch and voila – we become a statistic. Not truly understanding the nature of migraine, we urgently seek to put a stop to it. Some stay in this phase for a lifetime, never truly embracing the truth that migraine has no cure. Without access to reliable information and qualified doctors, we may continue to believe the myths that stress or poor lifestyle choices cause migraine. We may also believe that each individual attack is a separate condition rather than understanding that migraine is a neurological condition that never truly goes away.
Schooled in the basics
In pursuit of a cure, some lucky few discover a doctor who truly understands migraine. This is when the education process actually begins. We learn the difference between “cause” and “trigger” as we begin that lifelong process of tracking our symptoms. We also discover that living with migraine also means accepting the role of “lab rat” as we try one treatment after another, hoping for fewer migraine days. Living through failed trials, intolerable side effects, and ongoing frustration becomes exhausting.
We finally reach our limit and slam on the brakes. We tell ourselves that we’ve “tried everything” and “nothing works.” So we resign ourselves to going it alone. Most do not give up treating acute symptoms, but we do abandon medical preventives. Some of us call it “taking a break” when the truth is closer to burnout. This phase may include clinical depression due to the many treatment failures and lack of understanding from our support systems.
Sometimes we wonder if alternative treatments can help. So we explore treatments like acupuncture, chiropractic, nutritional supplements, various diets, and more. Occasionally we find these helpful with fewer side effects than medical treatments. Given the poor track record of medical treatments, it is understandable why so many of us seek a natural answer.
Sooner or later, many realize that even natural treatments don’t produce the lasting results we seek. Sometimes these treatments fail miserably, require adherence we are not able to maintain, or are too expensive to continue. Even the ones that help don’t offer complete remission. We are tired of fighting this fight. In this stage we explore invasive surgical procedures that promise hard-to-believe success rates. Neurostim implants, nerve decompression surgery, PFO closure, deviated septum repair, vagus nerve stimulation, SPG block implants, and more begin to sound like viable options. We rationalize that the potential benefits outweigh any risks if the end result is migraine extinction.
When the treatment fails, insurance denies coverage, or we simply aren’t a good candidate – our world may collapse. In our minds, these options were our last resort. Without a good outcome, we may find ourselves adrift, wondering if we are doomed to a life of misery. Those lucky enough to weather this storm do so by discovering the warrior within. Determine to find answers and a purpose, we pick ourselves up and start over again.
A PhD in Migraine
This renewed drive compels us to take ownership of our disease. We become experts, not only in our own experience, but in migraine as a whole. Quick fixes and sensational headlines are not sufficient. We stop accepting that “nothing can be done.” Doctors get fired. Friends get lost. We find our power. By taking responsibility for learning about migraine, we become empowered consumers. It is our life and our health – so we take charge by hiring those doctors who are best suited to work with us. With no illusions that a cure is available, we are convinced that our quality of life can be improved. There are no limits on how to achieve this dream. We may enlist help from all kinds of sources, not out of desperation, but from a creative, insatiable thirst for life.
Acceptance begins when we ask ourselves, “How can I have the best quality of life even with migraine?” We stop trying to eradicate migraine and discover ways to accommodate its presence in our everyday lives. We haven’t given up trying to reduce its impact and we still hope for a cure. The difference is that we are no longer consumed with anger, bitterness, or a desire for revenge against this unseen foe. We make peace with migraine.
Ambassador of hope
Even fewer choose to pick up the mantle of advocacy. Advocates create meaning and purpose by helping others who are stuck, lost, and in pain. Despite their own journey (successful or not), they long to reach out to others without hope. Migraine becomes a positive force that drives them. Not every migraineur will become an advocate. Those that do have transformed this disease into a reason for being.
I almost forgot this one! If you're really lucky, you might just get to enjoy this phase at some point along the way. Whether temporary or permanent, remission feels really good because you get your life back. The right treatment, a pregnancy, menopause, or finally avoiding that one trigger that set it all off is possible for some patients. If you've been blessed with a long break between attacks, you know how freeing it is. If you are currently in remission, I wish you well and hope it continues!
Now tell us your story.
Do any of these phases belong?
What else is a part of your story?
Each one of us is unique and so is our experience with migraine.
Have you taken our Migraine In America Survey yet?