In January, Sarah was diagnosed with New Daily Persistent Headache. Simply put, this is when a patient, most often a woman, is healthy but has a headache that will not go away. In some cases, the headache follows a virus, a tick bite, or an illness. In some cases, as with Sarah, there is no reason. There is no cause. There is no cure. And often, there is no treatment to relieve the pain. The following is an excerpt of a journal that I've started on a NDPH support forum. At times I feel totally empowered to help her. At others, completely overwhelmed.
September 13, 2011
This is the day that we can pinpoint that it started. For the year or so prior to this, she was prone to headaches. She would chew gum with aspartame and immediately get a headache. At least three times a week, she would come home from school with a headache. I worried, but not too much. I figured that it was normal, hormonal happenings in a teenage girl. That she was going to have headaches instead of horrible mood swings. They didn't stop her from doing anything she enjoyed. She was still my sweet smiley Sarah.
We were on the way home from the beach when she mentioned that she had a headache when she woke up and it hadn't gone away with the ibuprofen. And it hasn't gone away since. She has had three two hour periods where she has been pain free. The first time, she came to my classroom at school to tell me her headache had gone away, joy in her voice, a light in her eyes. Later on, after school, the joy was replaced by the dark circles. Still, she was hopeful.
The second time it happened, was the day after we started taking the inderal. She told me after the fact, and we thought that the medicine was just starting to work, and this was the beginning of the end. The third time, she didn't even get her hopes up, but waited for the pain to return.
We started seeking treatment in January. I wish we would have/could have started earlier, but financially we were not able to. We have an HRA for insurance and had used it all up. Specialist appointments, if made then, would have to be paid for in full. This was not something we could afford at the time. As it turns out, it really hasn't mattered anyways. Nothing we've done has made any difference in her pain. No doctor we have seen has had any answers or solutions.
She's been a trooper. She's cheered. She's gone to school. She's continued her life as normally as she can, just with a shadow of pain dimming it all. Some days, you would never know she had a headache. Other days, she retreats to her room as soon as we get home and sleeps til morning. The day that it really became clear to me that this was something that I would fight, would research, would do whatever it took to find answers, was the day we shopped for prom dresses.
As a child, I never imagined my wedding or poured over magazines of prom dresses, but Sarah did. This should have been a joyous day. A day of giggles and smiles and hope. Instead, it was a day overshadowed by the headache. A day of lackluster reactions to beautiful dresses. A day of being slumped in the car while we travelled from store to store. This simply broke. my. heart.
It may indeed be NPDH. There may indeed be no cause, no cure, no pill or treatment that will give her relief. But as long as I have breath, I will not stop looking. Never stop looking for that treatment, that diet, that lifestyle change, and if necessary, that pill that will help my daughter reclaim her joy.