[themonster7]

May 17th I woke up with Ramsey Hunt Syndrome 2, or shingles inside of my ear. It was the most painful thing I've ever endured and due the intense vertigo I was bedridden for the next two months. I was misdiagnosed as having an ear infection and put on antibiotics for 7 days. When those antibiotics were through and it had only gotten worse I went to the ENT and was told it was shingles. The next day the entire half of my face was paralyzed, the doctor told me that if I had gotten the correct treatment within the first three days I would have a 60% chance of ever moving that half of my face again and fully recovering. It's been four and a half months now and I've gotten most of the functions back in my face, I still can't move my eyebrow, left half of my lips, left half of my nose, and I still have to tape my eye shut to sleep even though I can close it, I just cant hold it shut. I'm seeing my doctor on October 8th for the first time in three months, and the pain in my ear has come back with the cold. I'm worried I have some form of fibromyalgia. I'm 21 years old, they don't even recommend worrying about the shingles vaccination until you're in your 60s.

[Travelinglady]

So sorry that happened to you. I guess they wouldn't expect shingles in someone so young. TV advertises it as more an older person's disease.

I hope more function returns in your face.

[January]

I'm sorry you're so sick. I have never known someone below the age of 40 to have shingles. I hope you get well very soon.

Gentle hugs,

Jan

[Gus1234U]

there is an auditory therapy (sound) that helps the brain to reboot' or work-around, damaged nerves, if the damage is in the brain. i don't know if the damage is in the muscles and nerves of your face or not, but you might inquire of your doctor.

if brain neural connections are affected, you might look into a technology called Holosync (you can get it as a therapy at CenterPointe.com). my doc called it "Alpha/Theta" therapy, and disparaged it, but it "cured" my brain of many disorders.

i know that many stroke victims recover if they persist in brain stimulating activities... so don't give up hope~!

best wishes~
Gus

[themonster7]

Thank you so much Payne and January.
Thanks for your input Gus! The disease was in my ear canal, which connects directly to that half of my throat, nose, and facial nerves. I actually can't even taste out of the left half of my mouth or smell from the left side of my nose. It didn't just damage the nerves, it completely killed them so they have to regrow, which is why the recovery chances (60%) are so much smaller than cerebral palsy (85%). I've been taking vitamins that support nerve regeneration every night and eating fish at least twice a week for the nerve regeneration in it. I'll check with my doctor about these other forms of treatments when I see him on the 8th.

[Morgansangel]

So sorry this happened to you.

I had shingles for the first time at 9, then again at around 23, then a couple of years ago.

I was lucky in a way, it's always been on my main trunk. At 9 it was on my back, 23 on my chest and a couple of years ago on my back again.

I don't know why they think its elderly disease because I was told once you've had chicken pox you're always at risk & stress can bring it on.

[themonster7]

Just got back from seeing my doctor. Good news and bad news. He says I've recovered more facial movement than most people who have this disease ever get back. I mentioned the pain that I still get in my ear and he says I have a mild case of postherpetic neuralgia, but it's so mild he's not giving me meds because of there side effects. Just an update for anybody who was wondering.

[BobKatt]

Holy smokes! I just read your original post. I've never heard of shingles in the ear canal before. It sounds horrible and my heart goes out to you. I had shingles at age 42 but I was lucky I had it on my back. Oh it was very uncomfortable! So I was in shock when I read about your case. Did you give the person who gave you the incorrect original diagnosis that feedback? I would be very angry about that. Thanks for posting an update and all the best to you.

[archipelago]

It sounds just horrible. I am deeply sorry. It must be totally distressing. I had shingles once. While it was terribly painful, and misdiagnosed twice before treated, I got through it okay without real damage. A regular case of shingles is bad enough, but to have your symptoms…wow…I hope you are going to be okay.

[notz]

Sorry to her about your shingles. My spouse got them in March of this year on her face. She was lucky that her face was so swollen she didn't feel much pain. It was mighty ugly and put her in the hospital for 4 days. She's much improved with almost full feeling returned and a couple of small scars. Good luck to you. I hope you keep us informed as to your progress. I hope it's all positive news!!