Patient Comments: Ramsay Hunt Syndrome - Treatments

What were the effective treatments for your Ramsay hunt syndrome?

Comment from: Jeff, 25-34 Male (Patient) Published: April 02

First off, I was diagnosed when I was 27. I was diagnosed with Ramsay Hunt syndrome (RHS) 7 months ago. I had 12 nights of hospital bed with some antiviral antibiotics treatment. Seven days after the first symptoms appeared I ended up in the hospital. It started with pain behind my ear. After that the terrible headaches started and soon after that I got paralyzing symptoms on the left side of my face (mouth/eye/forehead), had trouble with my balance, and I also lost the ability to taste salt. It was hard to get properly diagnosed because I didn't have sores on my skin. Therefor they needed to do a spinal tap for brain fluid to diagnose RHS. I slowly recovered. My face is no longer paralyzed, my balance is good again and I can taste salt, but I still have a lot of headaches, which are more frequent when I have stress at my work, which happens quite a lot as a teacher. My doctor told me that most people who are diagnosed with a serious virus take at least a year to fully recover, so I hope my headaches will be gone in 5 months.

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Comment from: Alison, 45-54 Female (Patient) Published: January 15

I have just been diagnosed with Ramsay Hunt Syndrome; yesterday. The pain today is frightful. I have been prescribed antiviral drugs 8000 mg 5 times a day and should be getting some heavy duty pain killers today. I didn't realize it would cause this much pain. I have been told to watch carefully for all sorts of horrid symptoms, especially facial paralysis and, frankly, I'm scared.

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Comment from: julie, 35-44 Female (Patient) Published: March 11

I was 42 years old when I was diagnosed with Ramsay Hunt syndrome (RHS). It was the worst pain ever! It all started with a constant ringing in my left ear, then a terrible taste in my mouth. Then the pain started behind my left ear. When I woke up the next day my face was drooping, I couldn"t close my left eye, I couldn"t smile, I couldn"t eat or drink on the left side of my mouth. In other words my whole left side of my face was paralyzed. I went to an ENT and he put me on Valtrex (a viral infection medicine) and prednisone (a steroid). After 2 doses of the medicines, my face started to have feeling again. Now it's been 1 year and everyone says my face looks the same... but I can tell it"s still not 100%. I wonder if it has ever switched sides of the face on anyone.

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Comment from: ML, 55-64 Female (Patient) Published: October 08

This week was the 16th anniversary of my facial paralysis from Ramsay Hunt - total paralysis of the right face when I was 41. As it healed, I developed synkinesis. I have done years of therapy and treatments and people say that I look much better, but I feel the pain and tension every day. These are the treatments I have found helpful: 1) Physical therapy to retrain the facial nerves/muscles to work more fluidly. 2) Osteopathy and massage. 3) Lightly tapping the face when tense and resting every day with heat on my right face. 4) Botox! I have it on the LEFT side of my face to reduce the wrinkles and try to match the activity of the right (paralyzed) side -- do not have the doctor inject the side that is traumatized. I also have the shots in my neck, head, and occipital area at the back of my head. 5) I have a punctal plug in my right eye to help with the tearing. 6) Lots of eye lubricant for the dry eye syndrome. Hope you can benefit from this.

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Comment from: Mrs. Vickie, 45-54 Female (Patient) Published: March 19

I"ve had Ramsay Hunt for almost 4 years. My original attack was on the left side of my face and then my whole face was paralyzed. It's not limited to just one side. Acupuncture has been a life saver for me and natural medications. Olive leaf is helpful! Good luck, you are not alone!

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Comment from: Marylyn, 65-74 Female (Caregiver) Published: February 12

Three years ago my husband had paralysis of one side of face. Initially we were told it's Bell"s palsy. Saw another diligent general physician who diagnosed Ramsey Hunt syndrome. After cortisone and acyclovir, swelling and paralysis of eye and mouth improved over 12 months. Then he got extensive clots in the leg that warfarin and Clexane had given; then stomach bleed from warfarin. Prior he had episodes of tachycardia which we have now controlled with magnesium. Lately he is moody, excessively tired on CPAP (continuouspositive airway pressure) machine nightly. Doing my own research, these conditions are due to vitamin B 12 deficiency.

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Comment from: ShannonM, 35-44 Female (Patient) Published: January 31

I have had Ramsay Hunt Syndrome for a little over two years now. I first had Bells Palsy with a pregnancy about 14 years ago, then with the stress of life ended up with RHS. I have seen many doctors that said to just deal with it, but my primary care prescribed Acyclovir (many say it won't help so why bother). The Acyclovir 800 mg 5 x day lessens my symptoms. I can almost tell when it is time to take another pill by the way my ear; tonsil and throat start to hurt. When I start to feel the facial numbness I know it's time to de-stress and relax for a while. Keeping my stress level low is key. Best of luck to everyone.

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