I have had this condition for the last 35 years. It began in my 20's. My sister had it and now my son gets it too, I believe there is some genetic factor. For me it is usually related to getting a chill on my face, being in a draft from wind or air conditioning. I get it on both sides of my face. I think it's neurological, but much as I've talked to many doctors about it, I haven't had any answers. They've even tried to tell me the facial pain and the mouth soreness are unrelated, when I've had this probably 50 times. It always starts with pain just in front of my ear and then the facial sensitivity begins. It can hurt to brush my hair, blink, and even the lightest touch to my face can be painful. The mouth soreness usually begins a day or two after the initial onset and can last a week or more. Right now the roof of my mouth is raw, but sometimes it hits the lower nerves more and I have a sore throat and soreness around my gums as many of you have mentioned. It's a miserable affliction. I haven't tried the antiviral medication. Perhaps that will help. I've been able to head it off with warm compresses if I do it as soon as it's begun, but only a few times. Lately it's been really bad but I've been more stressed. I do think stress plays a part in this.
I am a 40 y/o healthy woman and I just recently noticed swelling on the left side of my face. I have swelling around my left eye and check is swollen. No problems with chewing, but left ear hurts as does left eye. Does any have any info about this problem???? Really want to know
I noticed this thread started a while back. I am having these same symptoms as I write and have for about 3/4 years now intermittently. when I mentioned it to my doctor, he diagnosed it as mild shingles. but it keeps coming back every few months and I didn't think shingles did that. He is an amazing Dr. and has never been wrong yet. I don't take prescribed meds when the bouts occur, I just suffer through with Excedrin for Migraine. seems like none of us really has any concrete answers.
This is my 4th bout and so far the worst. My doc too has suggested facial shingles. The problem now is my left ear is agony and my back teeth are so sore. This is the first time my mouth has ulcered. My doc also gave me anti vital acyclovir , ... 5 soluble tablets a day... Which do work for a few weeks then it comes back. I'm now waiting for an ent appointment . My doc phoned ent for advice and they suggested the virus has left damage to the nerve running through my ear. It's like someone has drawn a line down my face as it's all on the left side. Aaarrrggh
WOW! I googled these exact same symptoms. I have had this for about three yrs now every 3-4 months and none of my doctors can figure out what it is. I also have arnold chiari malformation in my brain which I had just assumed was just maybe pushing on a nerve or something. Has anyone yet been properly diagnosed?? I am having this again right now and it *****!! I also get a sharp electrocuting pain for about 3 days straight each time. It is killer!! I would really like to know what it is..
I have exactly the same symptoms and I've had them for years. Sometimes they're more painful and last longer, always on the left side - my dr tested me for arthritis, with no result of course. I feel horrible right now with a very sore eye as well. I wish someone knew what it was. I don't drink or smoke, I eat tons of veggies and other lovely stuff and am other wise healthy