For 5 years now, I have had random pain in the temporal area. Some times, though rarely, often includes the same pain just behind the left ear. Some days I have what I call storms.. which means I get this pain every couple of minutes. It is sharp, goes away or could even be dull and it will hit and quickly spread and then nothing. It interrupts thought, completely annoying, and at night when laying down.. a zap (as I often referred to it as) will cause an involuntary jump on my left side.
I have been to FOUR... count them FOUR neurologists. I have had countless MRIs, MRAs, CT scans, neck ultrasounds (which revealed the need for a partial thyroidectemy... didnt solve the pain), and 1 EEG. All came back normal.
From what I can remember, 5 years ago it started with burning in the very same place that it is hurting. It was like molten lava running down my temporal veins. After close monitoring (certainly had plenty of time), I notice that when I am having this pains rather frequently throughout the day, I can feel my pulse through my temporal artery. When I don't get the pains, I don't have the pulse. There is a correlation between the strength of the pulse and the sharpness and frequency of the pain.
With the neurologists, they have tried most medications. Topamax (only good for nice weight loss, bad if you want to be smart), Lyrica, Nortriptalene... tried Indomethecin (can't tolerate), Beta blocker injections in temporal area (worthless)... I am completely, total at loss. Dire help is needed!
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