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 pop 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..

[mkh9]

It could be migraine related. But it also almost sounds like Bells palsy which can come on after EBV and other viral infections. A lot of the time Bells palsy will go away on its own. But sometimes you can get complications. I assume the ENTS ruled out ear infection. I think you are on the right tract with it being neurological.

[LivingDead101]

So sorry to hear your going through all this. My Dr tested me for EBV, then sent me to an imuneologist to confirm. It seems there's nothing that can be done except wait. ? This just seems crazy to me ! I was an active woman a little over 14 months ago, and I got sick, and I've stayed sick every day since, I can't stay awake, I'm very weak, I have other odd symptoms off and on, I don't even look like the same person now like I did before all this, I've had swollen face and eyes, off and on through out all this. At times it's been really bad I could barely get my eyes open my whole face was so swelled up. The Drs I've seen, just all seem to have the same opinion, there's nothing they can do. My PCP, wants to try an antiviral, but no promises it will help. Wish I could afford the Vitimam C but I'm just barely surviving month to month now, I have no money for anything other than keeping my lights on and rent paid. On SSI disability, I swear if the Gov ppl had to try to survive on this, none would be able to do it, but at least I have medical help now, so that's something. I just want to get well, like everyone suffering with this. I hope it's possible, I just can't hardly believe there's nothing that can be done to help or cure ppl with this... I wish you all the best !!! And I hope someone someday will come up with a treatment or cure for this thing, I'm afraid it's going to kill me it's so bad. Truly livingdead101