Advancing science, one patient at a time
Cloaked in the darkness of a room with curtains drawn, walls painted light blue adorned with family photos, door shut to keep out the noise. For several years, Elizabeth Roberts-Zibbel spent a large majority of her existence in this cave. Not days, not weeks. Years. She watched from this room as her young children grew. Her husband worked from home in order to care for her. She was shielded from the outside world, but within those walls she was living her own personal hell in debilitating pain, not visible to the outside.
And she wanted out.
Writing her way out
Elizabeth was diagnosed with migraine disease at the age of nine, but she doesn’t remember a life without migraine. During her second pregnancy, her attacks progressed into an everyday occurrence, unrelenting, with no pain free moments. She now had chronic migraine as one attack blended into another. A few years later she had a full hysterectomy due to endometriosis, which she secretly hoped would also stop her constant migraine attacks.
Too often women living with migraine encounter those who are well-intentioned or by those who lack understanding of migraine disease, including health care professionals. They often hear “it will get better during pregnancy or menopause.” Elizabeth is proof that neither of these widely held beliefs about migraine is accurate.
Chronic migraine eventually forced her to stop working full-time in order to focus on her health. Shortly thereafter, she began a blog, now called LadyMigraine.com. Through this endeavor, her very artistic family came together to write a graphic novel about how chronic migraine affects the entire family. Two editions of Migraine 365 have now been published.
This journey then led her to start writing for Migraine.com at an extremely pivotal point in her history. She began a clinical trial for the first medication developed specifically for the prevention of migraine attacks commonly referred to as CGRP (calcitonin gene-related peptide) inhibitors. She was not afraid to write about the process to an audience eager to get their hands on this ground-breaking treatment.
Clinical trial number one
In 2015, Elizabeth began a clinical trial with one of four pharmaceutical companies racing to be the first to obtain FDA approval for their CGRP inhibitors, a brand-new class of medications.
Her participation started with a double-blind study in which neither she nor the person administering the drug knew if she was receiving the medication – a third party controls the master key. Although she’ll never know which she received, she saw drastic improval. She then went to open label trial and her improvement remained steady, with no side effects.
Aftermath being in a clinical trial
When participation in this clinical trial ended, Elizabeth knew she would no longer have access to the only medication that had ever worked for her. The FDA typically only allows continued access prior to approval for “life-threatening” conditions.
“I tried not to think about the end of the trial and just enjoy feeling better, but the end came and it sucked. I suffered,” says Elizabeth. “I went from being in bed all the time to volunteering and spending more time with my family.” Her health declined rapidly shortly after the trial ended. Her body reverted back to what it had known for so long, forcing Elizabeth back in her cave.
Clinical trial number two
Ever-resourceful, within five months Elizabeth found another clinical trial with one of the other four companies in phase three trials. Elizabeth already had a taste of relief and was willing to go through the ups and downs of another trial. The second CGRP inhibitor Elizabeth tried in clinical trials worked better than the first. She received monthly injections and the consistent improvement gave Elizabeth back more control over her health.
She was determined to take advantage of the improvement in her health. While still in the second clinical trial, she took a leap of faith and started looking for part-time job. She found a job that was uniquely perfect for her as a library page. No one is needed to cover her duties if she calls in sick and she can easily catch up on inventory maintenance when she returns. Elizabeth says an added benefit of the job is it forces her to exercise as she spends most of her time walking and lifting books.
Elizabeth made a conscious decision to be transparent about her health when she interviewed for this job. On her resume she included Migraine.com, knowing that it could elicit questions, well-intentioned advice, or be a roadblock in being hired. It paid off as her soon-to-be supervisor was empathetic and understanding.
Clinical trial number three
A few months after Elizabeth started working her second clinical trial ended. Her health declined, as expected. Once again, the landscape of Elizabeth’s life became the light blue walls of her bedroom.
Out of nowhere, her doctor mentioned another clinical trial for CGRP inhibitors. This trial was not for the prevention of migraine attacks, but rather for a rescue medication. In pill form, this medication aims to provide a quick burst targets the CGRP receptors that emit pain signals during an attack.
Unfortunately, her body did not respond as well to rescue medication. Shortly after she began the trial, her doctor informed Elizabeth that the approval and roll-out of three CGRP inhibitors would finally come to fruition. They decided together that continued participation in her third clinical trial was not in her best interest. Abortive CGRP inhibitors continue to be studied and have not been approved at this time.
Opening up the walls
Since the market release of three CGRP inhibitors, Elizabeth tried one that made her feel worse, the side effects unbearable. She is now on a different preventive drug. Her daily pain has transformed in ways she didn’t contemplate and the results are even better for her than while in any trial.
“I still feel sick a large percentage of the time, but it feels like the flu…with no head pain,” Elizabeth whispers, almost afraid of saying the words out loud. Sensitivity to light, sound, certain foods, and nausea still exist.
Elizabeth hesitates to provide an update to those who’ve followed her bumpy ride on Migraine.com. She wants readers to be cautiously optimistic. This is not a cure and people will respond differently or not at all. Elizabeth is savoring each moment with her family for the first time with no head pain.
Going with the flow
In Elizabeth’s first article she wrote for Migraine.com she compared her relationship with her chronic migraine disease to being like a river, “a river I am no longer trying to escape from.” Elizabeth had a huge shift in how she viewed her condition. She stopped hoping for a cure and shifted to managing her disease. “I started trying to stay afloat on the river rather than struggling to be free of it (and essentially drowning as a result)” she says. “I’ve made my peace. My ‘peace’ is a really nice boat which keeps me warm and dry on the river.”
She recently stated that “migraine disease has steered the course of my life. I wouldn’t be who I am, be married to the person I am married to, or anything, without it. And I like who I am.” However, the ups and downs of participating in three clinical trials in four years has brutal on both mind and body. She sacrificed her health, knowing that whatever her outcome, she was helping to advance the science of migraine disease.
Thank you to Elizabeth and all who participate in clinical trials, who sacrifice their own health to help advance the science and understanding of migraine and headache diseases.
Lady Migraine 365: ladymigraine365.com
Migraine 365: migraine365.com