“My Broken Brain.” That phrase sums up the feelings of so many with chronic migraine. Our brains are broken. Each brain worked normally for years—some had small glitches here and there, but no one expected it to completely betray us. The wires got crossed, the signals became confused, and actions became blurred. Now what do we do?
In Don Vanderpool’s case, he created a safe space for others to talk about their broken brains. His Facebook group of the same name is “intended to be a place where those of us who suffer migraine can simply find others going through the same things.”
Having seen firsthand how migraine disease can impact those you love the most, he encourages family members to get involved as well.
Don is in a time of transition in his life. Recently divorced, he now resides in Arizona near family. Life before chronic migraine included a career as an architect in San Diego. He tried desperately to keep working, but couldn’t keep up with the demand. In an attempt to continue working on his terms, he struck out on his own, hoping that a relaxed pace would be more manageable. Eventually, that too was lost to chronic migraine disease. He was wise enough to know that his health was more important.
Don experienced episodic migraine attacks from an early age, but didn’t receive a diagnosis until later in life. Two severe concussions in high school may have contributed to his chronic state.
“I vividly remember thinking that if only I could cut a hole in my head and pour ice water inside, it would feel better,” he says.
Today, most headache specialists believe that prescribing opioids can cause more harm than good. The potential for addiction, medication overuse headache, and unpleasant side effects, combined with the difficulty of coming off opioids, make doctors hesitate to include this medication in a treatment plan.
Don’s headache specialist also believed in treating migraine with means other than opioids. Desperate for any relief, Don turned to a pain specialist to explore opioid therapy. His headache specialist sympathized with Don’s decision, having seen him struggle for years.
Over the course of a year Don tried hydromorphone, butrans patches, and methadone, maxing out on the dose of each medication while taking them 24/7, an extremely aggressive treatment protocol that led him to feel “strung out” all the time. His pain lessened but eventually he only experienced relief for one to two hours before needing another dose.
When the opioids worked, he says the pain still existed but it felt “as if a sheet was draped over the pain and held down.” The painkillers didn’t completely take away the pain, but gave him a temporary reprieve.
Throughout this process, Don’s mood and emotional state suffered tremendously, affecting his personal relationships. He didn’t like this version of himself. His attitude pushed away those he loved.
Eventually, he recognized that the use of opioids had created a disease in and of itself. He had become chemically dependent, and felt like a zombie. He made the hard decision to come off the opioids, knowing that the process would be long and painful. “The withdrawal experience was nearly enough to make me continue using the opioids simply because my body had come to crave them,” says Don. Over many weeks he titrated down his dose until he was free from the drugs. During this time, he suffered through anxiety, severe cramping, extreme restless leg, and mood swings.
While Don fears this year-long experience contributed to the downfall of his marriage, he is extremely proud of being able to rid his life of opioids.
Migraine as Co-Dependency
Don explains his complicated relationship with migraine as a co-dependency. “I think of my migraine as an entity—one attached to me and without which I have become unable to imagine.” For anyone who has been forced to adapt or reinvent their lives, Don’s sentiment makes sense. Of course a cure would be welcome, but with it would come another process of reinvention. It was hard enough the first time, Don says.
Don rarely daydreams about the day a cure is discovered. He works hard just to survive each day. He points out that he has seen “things during migraine that would frighten Hunter S. Thompson,” the author of Fear and Loathing in Las Vegas, known for his fast life and exorbitant drug use. Thompson ended his own life in 2005, something that Don openly admits he has considered in the past, and a thought he occasionally still battles. The suicide rate among those with chronic pain is estimated to be twice as high as those without.
Don has a powerful tattoo on his arm that reminds him he has a purpose on this earth. It reads, “The beginning of understanding is the wish to die.” Don’s willingness to share his dark internal struggle can help others realize they are not alone, and maybe encourage them to seek help.
Don still experiences about 25 migraine days a month. Since moving to Arizona, he has found it difficult to see a new headache specialist—many new patients experience wait times of six months or more. Until he becomes established, he still travels back to San Diego for treatment.
Don currently uses Namenda, a drug originally developed for Alzheimer’s patients that has shown off-label success for chronic migraine. It helps him with the brain fog. Nerve and sphenopalatine ganglion blocks provide him relief, even if only for a few days after administration.
He looks forward to restarting regular massage and acupuncture sessions, but the cost can be prohibitive. It will take a while for Don to find the right providers and get back on track with treatment.
Feel the Burn
Before chronic migraine, Don worked out six times a week, following a regular routine. However, migraine attacks do not follow a schedule. Many chronic migraine patients shy away from any type of exercise as it can easily incite an attack, yet studies show that regular exercise can improve migraine symptoms.
“Can you walk?” asked Don’s doctor when he expressed his frustration over losing that piece of himself. That simple question spurred Don into action. He had to redefine what exercise meant to him. He accepts his limitations and works out when his body allows. “If I feel halfway OK at noon, I’ll work out then. If it’s at 9 p.m., then I’ll do it then.” With exercise, Don also has seen improvement in his depression, a condition that is co-morbid with a majority of chronic migraine patients.
Advice for Others with Migraine
Looking back on the struggles he has faced, Don wants others to know that constantly changing the migraine cocktail can take a toll. “Take a break,” he says. “Be diligent and search for effective treatment options, but if nothing works, take a vacation from the pursuit. The constant chase for relief is physically, mentally, and emotionally exhausting.”
It’s unlikely a person will find the right cocktail of medications the first time. It can take years of experimenting, with a doctor’s guidance, to find the medications that best manage your migraine. The process can be frustrating and the side effects can create a whole separate set of issues. Don says that it’s OK to take a time-out to regain control.
“I am trying to learn how to take my life back. I will find enjoyments in life. I will create again. It will just be different,” Don says. He just moved into a new house in Arizona. He’s surrounded by people who love him and support him in his migraine journey. He’s started to focus on creating art again.
He recently shared his gratitude to those who participate in his Facebook group, My Broken Brain. “Many have expressed what a help this little group has been for them. And everyone has been a blessing and help to me. Sometimes just being there for someone—even when you might not realize it—is being a blessing.”
My Broken Brain: facebook.com/groups/384285098435674