United on a mission for a cure.
Parker Fowler was a 20-year-old student at Baylor University when he came down with an upper respiratory infection. It wasn’t an uncommon ailment, so he sought routine treatment at the student health care center and took antibiotics. After a few weeks, the infection was gone, but Parker realized the accompanying headache wasn’t going away. The constant, dull pressure under his hairline wore on him, draining his energy, and stealing his freedom to be himself.
He told his father, Jeff, and together they embarked on a confusing journey toward pain relief. Finally, Parker received a diagnosis of new daily persistent headache (NDPH), a headache that occurs in individuals who don’t have a history of recurring head pain and “persists” for more than three months. Parker’s pain level would jump from a three or four to a 10 seemingly out of nowhere, and on several occasions, he went to the ER for help.
“When he first got his diagnosis, we looked it up online and read what we could,” says Jeff. “For my wife and me, it was depressing because there was no hope offered of any kind, and the outcome just seemed really dismal.”
Parker and his parents thought maybe they weren’t asking the right people or reading the correct articles and medical journals. Jeff contacted the Mayo Clinic and the Jefferson Headache Center in Philadelphia. What he found was that no one understands what causes NDPH, and it is severely lacking research.
The search for answers and a cure
The Fowlers got Parker in to see a variety of specialists, and he tried calcitonin gene-related peptide (CGRP) inhibitors, triptans, dihydroergotamine (DHE), botulinum toxin A injections, opioids, nerve blocks, and even a blood patch procedure, but nothing gave him relief. Parker changed to a gluten-free diet, made sure to get regular sleep, experimented with biofeedback, yoga, massage, and tried the full holistic treatment spectrum—with little to no improvement. Lidocaine shots gave him marginal relief.
“In three and a half years of having this headache, it has never gone completely away,” says Parker, now 24. “I did some hypnosis, and during that time, I was supposed to try to remember times when I didn’t have the headache, and I even struggled to remember what that felt like.”
Despite these pitfalls, Parker and his family kept pushing. He currently takes a variety of supplements to decrease the pain and improve his energy levels. The combination of curcumin and boswellia may be responsible for reducing his number of pain spikes.
The creation of the NDPH Research Foundation
Determined to help his son find relief, Jeff created the NDPH Research Foundation, which raises funding for studies, gathers resources to help NDPH patients, and encourages headache specialists to dig deeper into the cause.
At home, Jeff continued to search for help for his son. Jeff started reading every article in medical journals that dealt with pain. He found commonalities among many of the pain diseases, including chronic fatigue syndrome, complex regional pain syndrome, and postural orthostatic tachycardia syndrome (POTS)—namely that they often come on suddenly in someone who is otherwise healthy, beginning as flu-like symptoms and evolving into long-term pain.
“[The foundation] started primarily, to put a lot of pain research papers all in one place where people could go and read about them,” Jeff says. “Then we put together a Medical Advisory Board for me to encourage experts to think about, ‘Well, how do we research this and what can we do?’”
Jeff regularly attends headache conferences to urge the best and brightest in the field to pay attention to NDPH. The foundation’s website is an excellent resource for patients, their families, and medical professionals to learn more about the condition.
“We’re paying attention to research, all around the world, from anybody who’s working on any aspect of headache pain,” Jeff says.
“It’s a little bit here and a little bit there. One of these days, we’re going to understand it. We’re going to get to the bottom of it. We’re going to cure it.”
While a cure is not yet on the horizon, the NDPH Research Foundation is making strides to reach their mission. The foundation’s request was recently approved by the National Institutes of Health (NIH) to include NDPH in their approved group of diseases for study through the Harvard Brain Tissue Resource Center.
In addition, the American Migraine Foundation is conducting a long-term, accessible patient registry called ARMR (American Registry for Migraine Research) to better understand the causes and effects of the over 300 types of headache diseases, including NDPH.
Perhaps the most exciting development is a clinical trial led by researchers at Stanford University to better understand the pathophysiology of the disease process and risk factors involved in chronic migraine and NDPH. The ultimate goal is to optimize treatment strategies and determine prophylactic measures.
Adapting to life with NDPH
Parker tried to keep up with college life while managing NDPH. Most days, he could make it to class, but was so tired afterward that he couldn’t do much else. The lack of energy and effective treatment made it difficult for Parker to motivate himself to fight through the pain. While many of his 20-year-old peers were focus on having fun, Parker struggled to cope with his diagnosis.
“When I first got it [NDPH], I had depression… but that just went with the lack of motivation and not feeling like doing anything, and even some suicidal thoughts,” Parker says. “Nothing planned, just this idea that if I weren’t alive, this would be so much easier.”
He transferred from Baylor, located in Waco, Texas, to California Baptist University in Riverside, California, to be closer to his family. He studied construction management, and when he graduated, he went into the family’s industrial real estate business. Working with his family enables him to take time away for infusions and other treatments and gives him the opportunity to rest when his headache spikes.
“It’s been mostly really hard on my wife and my family,” Parker says. “They try really hard to try to help me find solutions, and then it kind of becomes hard to talk about it because nothing has been working. It’s almost like a letdown when we’re not making progress.”
Still, he says, it’s brought the family closer.
In 2019, Parker married his wife, Reagan, whom he met at Baylor. She’s been with him on this journey from the beginning, watching him go through four years of daily pain without a single second’s break. NDPH has taken its toll, but they both believe that if you have a good supportive system, you can make it work.
“Don’t give up,” Parker advises others with NDPH. “Try to find people to connect with who can help you. Keep trying, even if it’s hard because it’ll get better.”
While the headache has not reached zero since it began, Parker is having fewer spikes of extreme pain. He wakes up with the headache but tries not to think about it, because paying attention to it exacerbates it. Instead, he focuses on work or an activity that distracts him, such as biking, wood-working, or photography. Though his days are still tainted by the headache, he’s found a system and a purpose.
“It’s interesting how on one side, we’re so devastated to see his life struggle,” Jeff says. “But at the same time, we have seen it sharpen him as a person, and it’s caused him to evaluate what’s important to him, and what’s not… He seems at peace with where he’s at.”
— by Ashley Hattle
NDPH Research Foundation: NDPHresearch.org
American Registry for Migraine Research: armr.org