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Epstein Barr Virus (EBV) Community
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Avatar universal

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..
7 Responses
1415174 tn?1453243103
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.
3229560 tn?1347037510
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
Avatar universal
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

Garrett
Avatar universal
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.
Avatar universal
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!
1 Comments
Sorry for typos!! As the post is several years old...
Avatar universal
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.
Avatar universal
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.
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