My NDPH started August 2019. I was in my second year of graduate school. I don't remember the exact day it started, but one day I became aware of a burning sensation on top of my head that didn't go away. At first I thought it was nothing and just shrugged it off, but after about 2 weeks I started seeing doctors to try and figure out what was going on. The rest, as they say, is history...

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I ended up seeing over 15 different doctors-- neurologists, pain management, primary care, internal medicine, ENT, dentists, rheumatology, ophthalmology, pain psychology, etc.-- the list goes on. All of my tests and scans came back normal. No one could tell me exactly what was going on. The doctors were even torn between whether it was NDPH or something called "nummular headache," since it didn't exactly fit into either diagnosis.

 

I went to some of the best headache specialists in the country and underwent an increasingly invasive series of treatments-- medications, antibiotics, Botox, nerve blocks, C2-C3 medial branch blocks, lidocaine and ketamine infusions...none of it helped. I tried exploring alternative treatments like acupuncture and yoga. I paid $1000 for a chronic pain course that promised to show me how to use "mind body approaches" to deal with chronic pain. Each attempt made me more frustrated than the last. I was ultimately turned down as a candidate for nerve decompression surgery. My last resort is to try to pursue a nerve stimulator, but I'm unsure if that's even something I want.

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I can no longer work or do much of anything productive due to the pain. The only thing I've found to help is, ironically, drinking alcohol. I'm sad and angry that so much of my life has been taken from me when I'm only in my 20s. I do have hope that something will eventually work for me, though, and I'm continuing to explore options.