Epstein Barr Virus (EBV) Community
Ear & Face Fullness, going on two miserable years
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This patient support community is for discussions relating to Epstein Barr Virus (EBV), chronic EBV, and infectious mononucleosis (mono).

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Ear & Face Fullness, going on two miserable years

I came down with EBV almost two years ago. Along with it came a sensation of ear fullness.. that sensation has not gone away, and since then I have been dealing with other symptoms. I am a 24 year old healthy(well, I WAS..) female. I have no idea if EBV is a cause or catalyst for my symptoms but it's worth exploring with other people.

The symptoms I have are ear fullness, face fullness(all on right side), muscle tension in face & neck, and headaches. Currently the worst problems and the ones that have not ever subsided are the fullness in my ear and face- it  eels as though my face is swollen(and some people notice a difference/puffiness in my face), and has gotten to the point where it feels like there is pressure behind my eye and my face is drooping-- while everyone tells me they don't see it, it is pretty scary! My ear feels like it hasn't been able to poop since this all began. The headaches have been bad at times, but not so bad recently- I stopped taking my birth control pill which I think may have been contributing to them, but would also mean that it is possible the headaches are not related the ear and face fullness.
In the past two years I have explored all avenues I can think of-from - ENT Docs( been to four), 2 TMJ specialists(one of which is a orafacial pain specialist)- who is confident that while I have similar symptoms of TMJ, I do not have a disorder/TMJ. , 2 physical therapists, 2 neurologists, allergist.
Basically, most of my docs are stumped and it's beginning to feel pretty hopeless.
I saw my neurologist today and she decided to put me on LYRICA. she is some way believes that the face and ear may be related to a migraine problem....although my headaches have decreased A LOT... i get a bad one maybe one every few weeks..

I am beyond frustrated and this has seriously taken over a lot of my life, I am back in grad school and am super worried my symptoms will get worse..

If anyone has any guidance or similar symptoms I would love to hear from them..
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