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.
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
I am a 32 year old male and have been basically experiencing the same thing for almost four years. From the EBV to face and ear fullness. Constant headache on only the right side. The right side of my throat is always tight. Which is awful because I am a singer. I've been to 20 doctors from ENTS, to Neurologists, Laryngalogists, Chiropractors, General, etc. I've been on dugs i don't even remember anymore, Antibiotics, steroids, Lyrica, muscle relaxers, anti depressants, allergy medications, reflux medications and more I don't even remember. I've had two sinus surgeries, a tonsillectomy, wisdom teeth removed and physical therapy for over two years. Done sinus rinses daily with and without antibiotics and steroids. I've tried natural remedies as well. It is so frustrating and I saw your post although it is 3 years old I found a little comfort in reading that someone had such similar symptoms as me. I know that sounds weird, I guess misery loves company. The latest is a small herniated disk between C3/C4 in my neck. Hopefully it is related to all the symptoms. Hope you are doing better by now!! If so please let me know
Do some research on monolaurin, high doses of vitamin c and reishi mushrooms. A lot of people have had success lowing antibody levels of EBV with these 3 substances. There seems to be a lot of others but those 3 together seem to be very effective based on some research but mostly antidotal evidence. Monolaurin seems to work especially well for ebv and other herpes viruses by breaking down the encapsulation surrounding the virus and allowing your immune system to kill it off. The vitamin c in high doses and reishi mushrooms help to boost your immune system including your NK and Tcells.
Possibly try Valtrex, an anti viral. Dr prescribed for both my son, 23, and mysrlf, 55 and it has helped. So sorry for all you have gone through and, astjis pist is several years old, I fo pray you are much better now!
I was recently diagnosed with reactivated EBV. My lymphatic system is also congested, which, I believe, contributes to the full/swollen feeling in my face (and body) and with the strange soreness of the cartilage in my right ear. My naturopath who conducted full body thermography recommended ELT (Electro Lymphatic Drainage) once a week. It is helping.
I have had a very similar problem. I contracted mono in November 2017, and a week after I had the initial symptoms of sore throat, fatigue, swollen lymph nodes, etc., my face started swelling really bad. At the time, my doctors did not know I had EBV because I had not yet been tested, so they gave me a steroid shot and steroid packet, and all the symptoms were gone within a few days and I recovered. In January 2018, my face started swelling again in a similar manner and has swelled every day since and my doctors eventually found out it was EBV. Honestly, the best way I have found to manage it is my diet. I stay on a mild ketogenic diet (it keeps water retention to a minimum so you can't swell as much) and eat no processed sugar or artificial sweeteners and take take vitamins C,D, lysine, echinacea, and a multivitamin. I know the virus is still active and that's what is causing the inflammation, but I absolutely cannot get this thing dormant. A steroid treatment pushed it dormant in November, but hasn't worked since. A steroid shot kept it down a week once, but the second I started eating processed sugar again, the virus got re-agitated and the bloating in my face came right back. The swelling has stagnated to just a bloated face since March 2018, but I'm beginning to wonder if this thing will ever go away. I just recommend changing your diet and propping your head up when you sleep. It won't fix it, but it won't be as bad.