Trigeminal, but not Trigeminal Neuralgia. What is it? HELP

@fdouglass

See a Neurologist who specializes in headache syndromes.

They are multifactorial and can have many things involved.

You ever get checked for allergies before you caught a virus? Could have exacerbated underlying inflammation from allergies.

The carbamazepine was most likely calming your nerves (nervous system hypersensitivity) which was likely also addressing some type of anxiety.

If the virus left some residual inflammation in the tissue irritating the nerves this can also happen. You don’t need any type of infection to have low level inflammation of the nerves.

Did anyone try you on an oral steroid for inflammation?

For me the Carbamazepine works like an allergy medication. Without it the clear mucus, pressure and pain are unbearable. But, it seams I may have to raise it again because symptom are coming back. Currently I am on 200mg x2 daily.

No tests for allergies before virus. I was put on a Flonase steroid. It does not seem to help. Thanks for the info. I will look into that.

I completely understand. I had a great PCP that was genuinely trying to help. Then she took another position as an er doctor. All the other doctors either pass the buck and send me to another specialist saying it is not something they treat or say "oh, it is just migraines". It for sure causes migraines rains. But, it is not just migraines. How do you find a doctor that deals with crazy sinus issues not caused by your sinuses. I hope you find your answers soon.
Thanks @johnspirit2

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.

@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?

Early in 2014 I had what I thought was a migraine on one side of my head for 3 months straight....every day, unremitting. My PCP referred me to a neurology clinic and they gave me an appointment with a certified headache specialist. She immediately suspected hemicrania continua and prescribed the medication which is used as a diagnostic confirmation. I had trigeminal nerve pain in my face from the beginning. Over the years the nerve pain has become more severe and more of the trigeminal nerve areas involved to the point it sometimes overshadows the headache pain. Based on symptoms described at subsequent visits she added chronic migraine to my diagnoses. My migraines feel much the same as HC but without the nerve pain.
Interestingly, although I had never given it much thought until now, there were times I would make an appointment with my PCP because I thought I had a sinus and/or middle ear infection and assumed my headaches where sinus related. All clear was the examination result each time. Of course that was before the headaches became continuous.

Yes, I am. There were times I would make an appointment with my PCP because I thought I had a sinus and/or middle ear infection and assumed my headaches where sinus related. All clear was the examination result each time. Later I learned from my headache specialist that the trigeminal nerve was responsible for what I was feeling. Things made more sense for me then.

Yes!

I have had bilateral pain in my face & molar teeth for nearly 8 years!
I have been to multiple dentists & even neurologist scratching his head not able to understand why I have this chronic facial pain felt behind my nose/ top teeth & constant pressure behind my cheeks!
I do believe that I also have irritated my trigeminal nerve.

I’m so frustrated why nobody can find this problem & treat it!

I’m at the stage that when I go to bed I really couldn’t care if I don’t wake up 🤷‍♀️.