I am so happy that I found a support group for NDPH. I was diagnosed with acute-onset headaches in March of 2004 (on my mother's birthday, of all occasions) of unknown origin, due in part to a crack neurologist. I had flu-like symptoms and was out of school for a week and a half and the headache got progressively better but never went away. This is the only textbook diagnosis I have ever had, and I fit all the symptoms. I did two rounds of Botox shots and a tricyclic antidepressant under the mistreatment of this neurologist before I was unable to function, couldn't attend classes, couldn't move.
I finally saw a great psychiatrist, who put me on Effexor, and then a fantastic neurologist, who added more Effexor as well as Topamax and Indomethacin. I had taken a medical leave of absence from the first semester of my senior year of high school, and I was able to go back to finish high school.
I have done biofeedback, osteopathic manipulative medical treatment, talk therapy, and chemical therapy. I was able to move 2,000 miles away to go to college, and I have another great neurologist. I went on Zanaflex and off Indomethacin. I have, happily, started tapering off both Zanaflex and Topamax; very delicately, of course. I am also doing EMDR for the chronic pain, and I have a good friend who does Reiki. So I suppose I count as a "success" story, but the frustrating part is that I'm still in pain on a daily basis, but only a 3 or a 4 (on the pain scale). Looking at a computer screen/TV screen for a long period of time hurts, reading books all day is painful, taking notes takes a lot out of me.
A Coke and two Advil is my magic medicine. Talk therapy and EMDR are doing a world of good, but I suppose I'm still entitled to some anger at this "idiopathic" headache for changing how I live my life. Not that it's a totally negative change, but it isn't easy.
Thanks for your ears/eyes. I'll try to add comments where I can--my mom is a nurse and I've done much more research on NDPH than I really should be doing.
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