Reply To: New member
I have no idea if this is pertinent.
I do remember Jerimy on the site copying something for a member Sue with cidp. The post was regarding hearing loss. Jerimy found an autoimmune disease related to hearing loss. Maybe you can search under posts by Jerimy or Sue. Or just PM Jerimy, he will be happy to help you, he is a very nice guy. I have bothered him more than a few times myself.
My next bit of info may or may not be linked to your problem, but I thought it sounded much like what my father in law goes through. He first, like you, went to the dentist for teeth xrays, explaining the unbearable pain. Right away, based on the normal set of dental xrays, the dentist refered him to a neuro. and suggested trigeminal neuralgia. Google it and see if it fits your description. If it possibly does and you would like more info, pm me and I will contact you. I take care of my father in law when he gets his flare ups. After about five years, we have learned to finally spot a flare up before it actually attacks and now we are able to start oral morphine at home as opposed to a hospital stay. Like gbs patients, he gets shocks on the side of his face and teeth, the pain is so excruciating, he cannot drink or eat and therefore gets dehydrated. By this time there is nothing in his stomach and he cannot handle oral pain meds and the attack just intensifies necessitating a 7-10 day hospital stay. Once the pain is leveled off, he can start drinking and eating and we go home until the next flare up. Between episodes, he is on high doses of lyrica and vicodin as needed to take the edge off. It seems (to me) that his flare ups are irritated by barometric pressure changes. We can count on pain in Spring and Winter. Sorry to have gone on, but if I can offer some info to help you, it would make me feel so good knowing that I could spare you the pain Grandpa Bob goes through. Good luck!
Dawn Kevies mom 😮