Sharing readers’ stories is something I did in the early days of The Daily Headache, but it fell aside when I got to sick to cope. After emailing with the mother of a teenager with new daily persistent headache (NDPH), I decided to revive this feature. To share your story, send an email with your name, age, headache disorder, and a little bit about yourself to kerrie [at] thedailyheadache [dot] com. I’ll follow up with some questions for you to answer.
Fifteen-year-old Francesca has had new daily persistent headache (NDPH) since she had Epstein-Barr mononucleosis in November 2012. She also has migraine. This is Francesca’s story. Soon, I’ll share what her mom, Kate, has to say about her daughter’s experience. [updated with link to Kate’s story]
What are your symptoms? How severe is the pain?
My headache pain can vary. For the last six months it has been a 6 out of 10 on the pain scale. Usually it’s on my temples and is more intense on my left side. Often it hurts in the back of my head near the base of my skull. I am sensitive to light, sound, and some sharp smells, they can increase the pain.
NDPH often comes on after an illness, accident or medical event. Did you have a precipitating event?
Before I had NDPH in my last year of junior high I got mono in the beginning of November. That lasted about two months or longer. After that I had multiple back-to-back sinus infections. I was still sick after that and I went to various doctors that kept giving the same answer that I was not sick. My mother then took me to a neurologist who diagnosed me with chronic daily headaches.
What is the hardest part about having NDPH?
The struggle doing daily activities that come natural to healthy people. Being sensitive to lights, sounds, and sometimes smells conflict with simple tasks. Sometimes when I stay at home with a migraine I can’t even leave the dark den because when I move in unfavorable ways the pain flares up. The days I do go to school it’s extremely hard to focus. During classes, I’ll try to listen but then zone out. When I snap back to reality I realize I missed some of the lecture and notes.
What do you wish everyone knew about NDPH?
Not everyone knows about it because informing lots people doesn’t really help anyone. Unless there is a person in their daily lives expressing the pain of NDPH, they cannot understand the struggles and stress that family members and the patient live with. Those who sympathize but do not witness the pain cannot truly comprehend.
What other advice would you give someone with NDPH?
The pain extremely sucks at the beginning and it will continue to suck for however long you will have it. You are probably confused or tired of the continuous pain and want it to go away fast. Gradually you’ll understand that getting healthy again is a slow process and you may suffer for a long time. Being a student who has NDPH it is quite hard because you have to go to school. Some teachers sympathize and give you the support and others can’t understand why you can’t just do the work because it is “only a headache.” They just don’t get it.
I’m not saying it’s not hard for an adult who has NDPH because they have to deal with the responsibilities of an adult and be functional and responsible.
But you can’t become a functional adult in society and be constantly tied down when you are still in your teens.