← Return to Trigeminal, but not Trigeminal Neuralgia. What is it? HELP

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@caosborn

I have two headache disorders, chronic migraine and hemicrania continua, and trigeminal nerve pain is very common for me and others with HC. I am not saying you have either of these, but if you have access to a headache specialist I would encourage you to go see one; or at least see a different neurologist. Feeling like I have the worst sinus infection ever in my face, severe ear pain and feeling fullness in both, pain behind my eye and feeling like someone is squeezing the back of my eyeball, severe upper molar pain are the most frequent for me. However, mucus is not a factor. When I have mucus it is due to allergies or diet sensitivities. I am getting some relief from Vyepti infusions every 12 weeks which is a CGRP migraine medication.
Keep advocating for your health care and good luck.

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Replies to "I have two headache disorders, chronic migraine and hemicrania continua, and trigeminal nerve pain is very..."

@caosborn-

Hi. Could you please explain how you first experienced hemicrania continua and or how your headache pain began with all 3.

I actually had sinus surgery, not accurately diagnosed in my opinion and now I have what feels like all of those headache pain syndromes that I did not have before surgery. It’s been very hard to navigate through and believe what any ENT says. Sinus or not sinus issues.

@caosborn, when you say "feeling fullness in both" are you referring to your sinuses and ears feeling full? But they are not? if so, when I finally got in to see my ENT, I was so excited because I thought I knew what was wrong with me (impacted sinuses), and he would come into the room and say, wow your sinuses are impacted. We have to do something about that. BUT, he actually said the opposite. He said he thought I had had sinus surgery because they looked so good. Then he told me that 90% of the people that come to him with sinus issues actually have trigeminal issues. He also said your trigeminal controls everything to do with the sinuses. Mucus, pressure, pain, etc, and that your trigeminal could give you the sensation of pressure and pain in your sinuses when in fact they are clear. I have not been able to have anyone else confirm this since. But, seems to be what both of us are dealing with, if I understand you correctly?