CGRPs – Navigating Wellness for the First Time in Years
Many in our community who are experimenting with the new CGRP therapies are experiencing a sense of wellness for the first time in years. With the emergence of freedom from pain comes a rush of new thoughts and conflicting feelings.
Can we trust this?
In a desperate search for relief, most of us have tried multiple treatment approaches in the past with varied outcomes. Perhaps we experienced only a temporary reprieve from pain. Maybe we were so excited by a successful therapy that we celebrated loudly, announcing to the world that we were healed, only to have our migraine attacks return with a vengeance. For some, success has been measured by a bumpy ride of some good days and/or hours, but nothing truly significant. Others found zero success from highly trumpeted new therapies. Regardless, we’ve learned to be quite guarded when or if we experience a break from our migraine cycle.
Our 10th annual Migraine In America survey is now open. Take the survey to help us paint a clear picture that while an attack might be over, the disease never really ends.
Let’s do it all
For those of us who are feeling a significant improvement from these CGRP drugs, it is overwhelming on many fronts. Once we begin to feel stable and well, we can feel a thrilling emotional and physical rush. We suddenly have so much more energy than we did before. The energy we had previously been spending responding to pain is now freed up for experiencing life. It can be disconcerting to adjust to this new reality. We want to do it all - at once - and throw all of those lessons about pacing out the window. After all, we have no idea how long this wellness might last. So we desperately want to live as much life as we can.
Wrestling with the devastation of grief
For some, it may have been years since we have felt freedom from relentless and severe pain. When we experience the world without constantly fighting pain – we consequently realize with more enormity and grief how much we have missed. When the blinders of pain are removed from our eyes - we see clearly how huge the world is and how little we’ve been able to participate in it. We notice how we haven’t been there, how much this disease removed us from our lives and the lives of our loved ones. When we begin to experience ourselves at full-throttle for the first time in years, it can be heartbreaking to consider all we could’ve accomplished. Similarly, we may take stock of the size or shape or health of our bodies due to years of fighting pain. We may feel weakened and ravaged from the battle and think about what might’ve been.
Can we afford this?
For many of us, if we’ve found a therapy that works well for us, we now must navigate the logistics of affording it. Many of the drug companies effectively get us hooked by offering a free number of months or even a year so that we fall in love with what the therapy offers. Then, that offer expires and we learn that insurance doesn’t cover the therapy and it costs thousands per month. We are desperate to hold onto this newfound solution which has given us a new lease on life. Many of us would be willing to go bankrupt to continue hanging onto health after living in severe pain for years. But some of us simply cannot afford to continue taking these kinds of medications. It is a devastating turn of events to have tried an effective life-changing solution just to have it yanked away.
The introduction of the CGRP’s has been a game-changer for many. Many people who were dealing with chronic, daily, severe pain are suddenly experiencing wellness. Others may experience intermittent pain-free time. Whatever the case, for many of us, we are navigating what feels like a new world. Do we trust it? Are we waiting for the other shoe to drop?
How are you navigating any wellness brought on by these therapies?
Have you taken our Migraine In America Survey yet?