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It is nice to finally, maybe, put a name to this nightmare. I've been dealing with these headaches for 7 years now, this is the first time I've seen someone else describe pretty much exactly what I'm going through. I did have one of the many (4 so far) Neuros I've seen mention NDPH, but he went right on past it. They've given me every kind of headache, anti deppression, anti seisure drug, plus more and nothing even slows the headaches down. We've tried Botox, accupuncture, Lidacaine to the occipital nerve, Cervical nerve ablation, twice, to where I felt like a drugged up pin cushion. Right now all I can do for relief is Oxycodone and Tamazipam at night in order to sleep. I've even tried Marijuana.. It sometimes helps and sometimes made things worse. I still work, but it is getting harder and harder to deal with work and headaches. I've been looking for more information, now that I have another place to look, maybe I can find something more on NDPH.
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Several months ago I started going to the Michigan Head Pain and Neurological Institute, which is supposed to be the go-to place for headaches. My headache started in may of 2002, it was the day I started my first "real" job after college. I had it for several weeks and just when I was going to do something about it, it stopped for a few days. I went through periods of being uninsured, so the HA went untreated. I finally went to a neuologist in 2004 who told me I had tension headaches and tried me on all kinds of meds, but nothing helped. I felt like he wasn't paying attention to me, so I stopped going and continued on. Meawhile, the headaches kept getting worse and staying for longer. I tried chiropractic, went to an endocrinologist, another neurologist and finally went to MHNI. I've been trialed on about 15 different meds, had nerve block injections and nothing helps. If something works a little today, there's no guarantee that it will work tomorrow. The neurologist actually never dx me with NDPH, but the woman who did my EEG mentioned it. The symptoms fit me to a T. I can pinpoint exactly what day they started, they're not responsive to any medication. Sometimes my jaw hurts and when its really bad, my inner ear hurts. Next I'm starting PT. During my PT eval, she told me I have hyperflexion which by reading a lot about NDPH, isn't uncommon. When I talk to my doctor I feel like I'm not making any sense, being stubborn or whatever because literally nothing is helping and I'm getting frustrated. This treatment isn't cheap. Reading that other people feel the same way I do is helpful, but just writing about it makes me want to cry. I don't want to have a HA for another 20 years until someone figures it out. has anyone found something that helps?