Have you been diagnosed with this syndrome? We are trying to find the best care and better prognosis for my daughter.
Interested in more discussions like this? Go to the Skin Health Support Group.
You may have already seen this, but here’s some more information about Ramsay Hunt syndrome: http://www.mayoclinic.com/health/ramsay-hunt-syndrome/DS00878
I have had Ramsey Hunt Syndrome for the last three years, (coming down with it at age 56) with two recurrences of blisters on the tongue, additional facial paralysis, and severe nerve pain in the ear. With each outbreak, the doctor prescribed the anti-viral drug valcyclivor, which did clear up the mouth blisters and other symptoms quickly. Prednisone was prescribed for two of the three outbreaks. I am currently on a daily , long term dose of valcyclivor to help boost up my immune system. I also take a daily dose of neurotin to manage the nerve pain in my ear. The facial paralysis on the left side of my face appears to be permanent at this time. Will be going to ENT specialst shortly due to continued pain, redness and swelling in the left ear. Will share any new information or treatment that may be prescribed.
I had shingles that began in my ear in 1995. I found out it is called Ramsey Hunt Syndrome. I have been experiencing vertigo (6 times severely since 1995). What can be done? What tests should I have done?
Hi @coni, I moved your thread to this discussion as I think it may help better connect you with some great people to talk to who have gone through similar situations. I’m also tagging @lorimar89 and @annieg in the hopes that they may share some of their experiences with you.
I also wanted to welcome you to Connect, @mdmendel81! Have you also experienced facial paralysis?
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I have had side effects from Ramsey hunt for 5 years now. Rest when vertigo occurs is the best suggestion I have. And a VNG test done by your Ent will be very enlightening. I have 80 percent nerve damage in my one ear from Ramsey hunt.
Rest and no stress. Good luck.
I have an 85 year old uncle that has been healthy all his life but got shingles in his left ear. He was diagnosed July 4 after he showed symptoms of paralysis on the left side of his face. He has had a hard time swallowing since it progressed down his throat. I wish someone would have talked to us about the importance of making sure he are and kept pushing fluids. He has now lost 45 pounds (in 2 months)and is a shell of the man he was.
He can no longer swallow it just runs out his nose. Hospice has been called in and were surprised at how fast he has deteriorated.
If you or someone you know has this keep the fluids up and help them understand the consequences.
Would love to hear from anyone who has had Ramsey Hunt Syndrome. Would be great to compare notes on this rare problem.
Hello @mattey741 and welcome to Mayo Clinic Connect. You will notice I have moved your post into an existing discussion on this same condition, which you can find here:
– Ramsay Hunt Syndrome: https://connect.mayoclinic.org/discussion/ramsey-hunt-syndrome/
What, may I ask, are you most hoping to hear from other members regarding RHS?
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