Traversing the Rollercoaster of Chronic Migraine After Brain Infection
Jen Cragen, 47, has what they describe as a “bucket of diagnoses,” dating back to childhood.
In preschool, they were diagnosed with motor dyspraxia, a condition where the muscles and brain do not communicate correctly, causing Jen to grip pencils tight enough to cause their hands to cramp.
When their menstrual cycle started, it was heralded by painful, heavy periods. Their mother had the same symptoms, and Jen was told, “That’s the way it is.” Their cycle would sometimes be accompanied by migraine, but only once or twice a year. “Most of my 20s was dealing with that stuff,” Jen says.
When Jen began seeing their partner, Karen Forbes, they learned everyone’s menstrual cycles were not “always painful, always heavy, always icky,” which led to more doctor’s appointments and an endometriosis diagnosis. This was followed by diagnoses of premenstrual dysphoric disorder (PMDD) and, two years ago, attention-deficit/hyperactivity disorder (ADHD).
They had a job in a group home working with people with intellectual disabilities. “I have three younger brothers, and the two youngest have intellectual disabilities, so it was like getting paid to hang out with people like my brothers,” they say. “It was really cool.”
But then in 2011, when Jen was 36, they got really sick, needing to go to the emergency room multiple times throughout the course of several weeks.
A MYSTERIOUS ILLNESS
“I said, ‘Something’s weird. I don’t know what’s weird, but something is weird, and I don’t feel right,” they remember. Doctors first said Jen had a virus, then on the second trip said their sickness was bacterial.
Jen, who lives in Maine, couldn’t keep food down for three days and needed a lobster pot, the largest container in their home, by their bed because of frequent vomiting. They went back to the hospital and almost immediately had a lumbar puncture.
“They were grossed out by how icky the fluid coming out of my spine was,” Jen chuckles.
Jen had bacterial meningitis. They were admitted to the hospital and remember nothing of the next two days.
Time passed strangely in the hospital during their five-day stay. Jen has flashes of memory: Karen staying with them. The 10-year anniversary of 9/11 broadcast on the TV screen. A new sensitivity to light when they were released.
“An ICU doctor thought I was a miracle person for surviving the bacterial meningitis, from how badly I came in to how I walked out and how short the stay was,” Jen says.
They didn’t know yet that the painful effects would linger for years.
AGGRESSIVE MIGRAINE ATTACKS FOLLOW INFECTION
For a time after having meningitis, Jen had difficulties with comprehension when they read.
“I couldn’t even knit or crochet,” they recall. “It was just sleep, eat, be a baby again.”
Despite the symptoms they were experiencing, Jen returned to work, needing the income. But the noise at work was causing regular head pain.
A neurologist directed Jen to wait about six months before starting a treatment plan for the migraine attacks they were experiencing, to allow Jen’s brain to heal further from the meningitis.
During this time, Jen says, they regularly had to call in sick because of migraine attacks. Eventually, they landed back in the hospital with a migraine attack that lasted a month and a half, and they were laid off, despite their efforts to suggest doing different tasks in a quieter location.
Jen went on short-term disability and, later, long-term disability.
“There was a lot of fear about whether it would continue forever,” they say.
Jen struggled for a while with finding a new identity outside of work. They found relief in knitting and crocheting.
They began headache treatments ranging from preventives to antidepressants that showed promising results in preventing migraine. Botox alone didn’t help, but Botox with calcitonin gene-related peptide did. Jen wore a sun hat and sunglasses constantly, even while grocery shopping, to minimize photophobia, or discomfort caused by bright light. Jen notes that they relate to the Corey Hart lyric, “I wear my sunglasses at night.”
Jen credits Karen with being an amazing partner and caretaker. “She’s always been super supportive,” they say.
Family-like relationships are easier for Jen to maintain than regular friendships. “[Friendships take] a lot of energy, and if people aren’t willing to do at least some of the work, I’m just like, ‘OK, I can manage without you.’”
LONG-TERM PAIN REQUIRES NEW WAYS OF COPING
Jen realized their migraine was chronic after learning from an informational poster at their neurologist’s office that 15 or more attacks a month qualified as chronic migraine; Jen was averaging 25 a month.
Jen’s chronic migraine, which several doctors believe stems from the meningitis, has been a significant challenge for them because of its longevity, compared to other health issues such as gastroparesis, gallbladder issues, and the removal of their appendix, all of which caused short-term pain. “There are different pains that are acute, but they disappeared,” Jen shares. “The meningitis is the one that went from acute to chronic.”
Learning their new limits and triggers has been a long road: The smell of asphalt, eating raw green peppers. Jen keeps lists of triggers and a bullet journal—a journal that incorporates drawings or lists and often is used to track goals—of their progress, self-care routines, and the frequency and severity of their migraine attacks. They keep heating pads around for back pain, knitting for distraction and joy.
The toll on their mental health has been steep. “It’s exhausting, frustrating, anger-inducing at times—at the system, at myself, at my system,” they share. “There’s suicidal ideation at different points, no plans, but just to be very blunt, that’s part of my history. The thoughts still come. We can’t control them; I’ve learned that over the years.
“It’s just a part of being human. We’re still here, we’re still surviving, and here isn’t necessarily terrible. I would like to not have the pain, don’t get me wrong, but my life isn’t super terrible, either. So I like where I’m at compared to where I was 20-odd years ago.”
TRACKING PROGRESS, FINDING PERSPECTIVE
Jen’s migraine has become manageable with the current blend of treatments their neurologist has prescribed.
“I never know whether I’m going to wake up with a bad one, or if it’s going to develop throughout the day, or if I’m going to wake up in the middle of the night with one. It’s just random,” they say.
Their neurologist considers the preventive treatment successful if Jen has only four migraine attacks per month. Jen’s bullet journal tracks the success, which varies. In February, four. In March, nine. A total of 14 in April, and nine in May. June was five, but then July was 16.
“My migraines are always going to be my migraines. They’re always going to be there,” Jen says. “They’re like the weather. Sometimes they get worse; sometimes they get better. They’re like a rollercoaster weather thing.”
Jen advises others experiencing chronic pain to get clear expectations and timeframes from doctors. “My first neurologist said I’d be healed in two years when I originally got sick with the brain infection,” they share. “I understood that to mean I would be back to normal in two years. He meant that I would be healed as much as possible.”
Jen notes that those living with chronic pain will always receive a wide variety of advice from others in their lives. They suggest having a polite “script” in your mind to tell the person, “Thank you for your advice; I will consider it”—even if you only consider it for five seconds before deciding on your own it’s not something you want to do.
For Jen, there is power in choosing their own path, pushing through the pain that may always be there in the way they decide is best.
If you are struggling with suicidal thoughts and need help or someone to talk to, you can dial 988 to reach the 988 Lifeline. Additional help is available in the Resources section on page 68.