Patient Comments: Ramsay Hunt Syndrome - Treatments

What were the effective treatments for your Ramsay hunt syndrome?

Published: November 14

I have had Ramsay hunt syndrome for 5 weeks now and the treatment that has helped me so far has been Acyclovir 800 mg 5 x day and Prednisone 40 mg a day. I still suffer from dizziness, facial dysfunction, bad bitterness in the mouth, everything in my ear is very loud, and frequent pain behind my ear up the neck and through the head.

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Comment from: chewie, 45-54 Female (Patient) Published: April 04

I had gotten shingles in my ear Ramsay hunt syndrome (RHS) when I was 27. I'm 50 years old now. My face was paralyzed, muscle, vision loss the whole bit. I went for shock and facial exercise, but still have pain in areas of my ear, head, and neck -- stress brings it on. Acupuncture helps and so does St. John's Wart -- a natural supplement for nerve pain and mood.

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Comment from: kc.jazzie, 55-64 Female (Patient) Published: November 13

I was diagnosed with Ramsay hunt syndrome two years ago. Although some of the symptoms of drooping eye and mouth still appear. I too, like others, hope that I don't ever have the severe attack as I first was diagnosed. The pain was beyond belief not to mention the disfigurement that I had to experience. The shingles in ear and mouth were the most painful. After medication was given, it still took almost a year to feel somewhat normal again although I don't think I will ever be the same again.

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Comment from: Bluefairy, 55-64 Female (Patient) Published: April 12

I was diagnosed with Ramsey Hunt syndrome two years ago. Although I received the proper medical treatment, I did not get it until it had severe effect. I have lost hearing, and it attacked my cranial nerves. I had to have a gold weight put in my eye so I could close it (haven't blinked in 2 years) and I am very dizzy, so it effects my mobility. I haven't been able to work, so I ended up retiring, which has helped because the stress has been relieved. So I am in the very unusual column, so says my doctor at Yale. Hope no one else gets this unusual and awful disease.

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Comment from: Stephanie, Female Published: March 08

I have had the after effects of this for 6 years. Every day I look in the mirror it is a reminder people say I look so much better but I do not think so - still have dry eye and all facial nerves on that side are gone. Have issues going to dentist. Have ribboning of my neck as well guess it could be worse - do facial exercises every day.

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Comment from: justakidd, 55-64 Female (Caregiver) Published: January 20

My mom has contracted this virus 2 times and both times she spent some time at the wellness Center in Orange County California. I can show you before and after pictures and you would be amazed! She is not the same as before she had the virus, but her improvement is remarkable. And the way she feels internally after the time spent at the wellness center is well worth the money!!

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Comment from: Maury, 65-74 Female (Patient) Published: June 15

I have had Ramsey Hunt Syndrome for over 4 years now. I have been very lucky because the QVH in East Grinstead have been wonderful. To date l have had 13 operations to help with my facial disfigurement. They have made a huge improvement and l can now face the World. My biggest problem is that people think because my looks have improved, l am better, I still suffer from fatigue and vertigo and muscle loss. Because little is known about it people shrug the illness off. I have now joined many local clubs in my Village and this does help. l know it's for life, so my answer is to put a half big smile on it and do what you can when you can.

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Comment from: Judy, 65-74 Female (Patient) Published: March 09

The day my life changed forever is exactly 2 years ago. I hate the way I look and dread looking like this for another 20 years. I do try to get on with life, but lots of days are still a hurdle. Have had acupuncture, and do facial exercises daily and every 3 months get a couple of little Botox shots. However no improvement over the last year. The general feeling I get is that it's not painful or life threatening, so get on with it. Would do anything to be able to smile, talk and eat properly again.

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