Living with NDPH

If you have been diagnosed with NDPH / New Daily Persistent Headache, you could easily answer this yourself. Most of us have had the exact same experience. You are going about your life, when one day, out of the blue you get a headache. It’s worse than any headache you have had before. It doesn’t lessen when you take a hand full of Motrin. It doesn’t ease up when you lay down to relax. If you are lucky (or just plain exhausted), you can sleep through it most nights. You may notice it if you toss and turn at night.

You begin the search for answers, because the headache is still with you. It never fully goes away. You probably end up in the ER, getting scanned every which way and poked and prodded. Maybe someone takes pitty on you and gives you some morphine. Good stuff, eh? You still have a headache, you just don’t care all that much that you have a headache.

Time goes by and you see some docs, many docs. You try many different medications, with varied results, but limited relief. Everyone and their brother gives you advice because they are sure that their once-a-month migraines are just as debilitating (they are not). You are so desperate you try everything from drinking more water to hanging upside down over your couch. Kidding on that last one – that may be the one thing I haven’t tried. Maybe that’s because my cousin’s best friend’s mother didn’t recommend it.

Got the idea? New Daily Persistent Headache starts with the rapid onset of an intense migraine quality headache with no known cause. And it just seems to go on endlessly. The doctor who diagnosed me explained it clearly. Imagine a light switch with a dimmer. The headache goes up and down, but never really shuts off.  When the dimmer switch is turned all the way up, you have intense pain. This intense pain often goes on for days, months, and sometimes years with out getting turned down much at all. When it is all the way down you have a dull ache that, after enough time, you become so accustomed to, you hardly notice it. The person at the desk next to you may complain and need to leave work early with a headache that wouldn’t phase you at all. You are thankful for such an ache, because you know it could be so much worse.

NDPH seems to be resistant to most migraine medications. Gee, maybe that is because it is not a migraine.  So people with NDPH just go on as best they can, trying new meds, testing out folk tale medicine, exploring natural alternatives, supplements, herbs and snake juice with the hope of getting some relief.

Hope. It is essential to your daily life.  I have to believe there is some solution out there for us. I have to believe this. The thought of living my entire life this way is unthinkable.