I wanted to post a recent development in my adventure in headache life. I was misdiagnosed with “Migraine” at least as my primary diagnosis. Now, I’ve been diagnosed with occipital neuralgia.
In all fairness to everyone who treated me, ON shares some of the same pathways, and the ON (occipital nerves) actually do play a poorly understood role in migraine hence botox injections in the back of the head among other areas of the scalp. In fact, botox is sometimes used in tx of ON.
Having grown weary of being told I have m8graine after NO meds worked especially prophylaxis, I one day searched the “sstabbing” sensation I’ve been telling ALL my doctors and ER staff. Turns out ON (occipital neuralgia) came up hot on my search.
I presented this to the VA only to be rejected. I told Mayo and they refused to budge. I went to a specialist who diagnosed me with severe spondylosis of the neck and you guessed it…..occipital neuralgia.
Occipital nueralgia is extremely, extremely painful, second only to trigeminal nueralgia in suicides. Its so bad its often referred to as the “ssuicide disease.” This was actually of some comfort to me because this was exactly what I’d considered when in severe breakthrough pain, and doctors tried to treat me with Reglan or Zyprexa (not effectice). Thankfully I’m now being treated by a specialist with empathetic staff, and my local ER docs no longer view me as some drug seeker.
So, if none of the migraine meds are working, try investigating occipital nueralgia especially if you’ve experienced traum to the head or neck, whiplash, and/or arthritis of the neck.
Hallmark S/sx are: stabbing pain in top of head and/or back of head/neck. Unilateral pain that goes from back of head,across the top of head, into back of eye, and even down into teeth. Also EXTREME sensitivity to light and/or sound as in even unbearable. It can have sudden onset,gradual,and last for several days of unbearable pain (say hello to dark room, everyone in your family walking on eggshells).