I’m sorry that you’ve been struggling so much & for a long time… Just because they couldn’t find any compressions, doesn’t mean you don’t have TN; your pain sounds just like it! And TN is a known symptom of ES, there are some research articles mentioning it, & stating patients have been cured after s styloidectomy. The facial nerve is also commonly affected, and has branches in similar areas. (I have trigeminal nerve pain, not the electric shocks but a sort of burning like freezer burn as you describe or itchy sore pain, as well as tooth and jaw ache). Pain in the neck when turning your head is a common symptom, sore tongue or burning mouth pain are common, the sweating and anxiety can happen with vagus nerve compression- given you mention a very small space between your calcified ligament or styloid & C1 this could well be the case. The Internal jugular vein is commonly compressed in this area- do you have any vascular ES symptoms, like head/ ear pressure, dizziness, off-balance feeling, pulsatile tinnitus?
If your hyoid is wonky that could well explain why your swallowing feels off, 7 either this or the calcified ligament could be contributing to the tickly cough…
If you’re able to get a referral to one of the doctors on our list who we knows has experience of ES that would be a good idea, I think it’s worth pursuing!
Here’s a link to the doctors list:
Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
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