Patient Comments: Ramsay Hunt Syndrome - Treatments

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What were the effective treatments for your Ramsay hunt syndrome? Submit Your Comment

Comment from: Killua, 25-34 Male (Patient) Published: September 23

August 18, 2016, my symptoms started with ear pain and headache. I went to the ENT, who prescribed co-amoxiclav and said that I have an infection in the ear. After 7 days, ear pain intensified, blisters appeared and my face dropped suddenly. I also got sore throat and couldn't taste food. I went back to the ENT again, who prescribed clindamycin and Cipro, and said that I still had infection. I had follow-up again after 7 days. I lost faith in my ENT because nothing is going well for me. I decided to change doctors. The new doctor diagnosed me with Ramsay Hunt syndrome and prescribed betamethasone and acyclovir 800 mg for 7 days. After 7 days I noticed that my face wasn't dropping anymore and I could eat and close my eyes very well. My doctor says that I have 85 to 90 percent recovery on my facial nerves. But my ears are a little left behind on the healing part. But my ears are a little left behind on the healing part, I still have hearing loss and some noise disturbance. I hope that my left ear heals well in the following months. It's been 3 or 4 weeks now on my Ramsay Hunt syndrome.

Comment from: Nayudu, 55-64 Male (Patient) Published: June 01

I had fever for two days followed by ear ache. I reported to the doctor with a reeling sensation. Initially diagnosed as infection in the right ear, but within 24 hours blisters appeared on my right ear and suffered facial palsy on the right side of my face. My right lid did not fully close and I experienced droop in the mouth. Doctor immediately diagnosed as Ramsay Hunt syndrome 2 and started prednisolone (60 mg) and acyclovir 800 mg, both for 7 days. Recovery was fast but the side effect is still there after 4 months. I am feeling much better now.

Comment from: Bellakristy, 55-64 Female (Patient) Published: March 26

My practitioner told me to get coconut oil and oregano oil (2 tablespoons of coconut oil to a drop of oregano oil), mix together, and with a cotton ball rub on affected area and bottoms of feet. I put the oils on my feet every hour and every few minutes on my left cheek. The oregano supposedly attacks the Ramsay Hunt virus. I also went to an acupuncturist (a master; there are different levels). She is awesome. It helped me a lot with the vertigo (shakes in my head).

Comment from: Prin6lulubelle, 45-54 Female (Patient) Published: December 31

I was diagnosed with Ramsay hunt syndrome (RHS) when I turned 25; just 1 day my life took a drastic turn. I lost my job as a teacher because my speech was drastically impacted. Unfortunately, I was not in the US at that time and doctors were baffled, it turned out that I was the 1st case in that particular country with RHS. No medicines, just shock treatment and speech therapy. After 13 months, I looked improved but will never be the same, my smile is not the same, and one can clearly see the imbalance in my facial expression in pictures/photos; my eyebrows are not leveled, my lips and mouth droop. I have learned to cope with it, it wasn't easy back then, but now, after 25 years, I have learned to deal with it.

Comment from: daveschnier, 45-54 Male (Patient) Published: December 17

I've had this Ramsay Hunt syndrome going on 17 years. I was only diagnosed about 8 years ago. Mine manifests with intense ear pain and ringing in the ears. Stress seems to be the main trigger. I've noticed that sugar and artificial sweeteners could also trigger an attack. Five years ago I became vegan mainly due to this condition. I meditate. I have tried the steroids and acyclovir. I also tried Tegretol (which I couldn't tolerate). I had a nerve burn for the ear (so far that hasn't helped). I've tried all sorts of pain killers (none really help). But to be perfectly honest, when this thing wants to take me down there's no stopping it. Sometimes I just have to be in agony. This is the hardest part of this condition for me to accept.

Comment from: bigbri, 45-54 Male (Patient) Published: August 16

I have been suffering from Ramsay hunt syndrome for 25 years now and nobody (health professionals) could figure out what was wrong with me. Then my doctor recently told me it was shingles (Ramsay Hunt) and prescribed me antiviral which helped almost immediately. Now this is the concern, I get this almost yearly, a breakout in my mouth and severe head and ear pain. My pharmacist says I should be studied as this is rare to have on a yearly basis. This is very discouraging and lucky for me I have not had any paralysis from it as of yet, but I always worry if it will get worse the next time. Good luck to you all.

Comment from: Trish, 55-64 Female (Patient) Published: May 23

I too had Ramsay Hunt syndrome and it has been over twelve months and I am still getting side effects. I had all the usual medication and yes it helped, but I still have dizziness, headaches, and ear pain. Last week I lost my speech, and the doctor thought it was stroke but no it was the Ramsay Hunt. I had every test but healthy so no stroke. I am fed up with the whole thing, I want my normal life back but I know that is never going to happen. All you fantastic people that have this good luck. I would not wish this on my worst enemy. Stay strong.

Comment from: ef, 65-74 Female (Patient) Published: February 28

I had Ramsay Hunt syndrome about 8 years ago, but the after effects are driving me crazy. I have motion sickness just walking about my house unloading dishes; up and down or side to side movement makes me dizzy. I have found Less Drowsy Dramamine to help some. It is a disability though.

Comment from: TL By, 55-64 Female (Patient) Published: February 13

I have had Ramsay hunt syndrome for eight months now. The left side of my face was paralyzed (only partially now), my left eye only closes 3/4 the way and my left side still droops.

Comment from: Nalphilly, 55-64 Female (Patient) Published: November 05

I got Ramsay Hunt syndrome (RHS) will visiting China. It starred before I left, with ear pain and a swollen gland. I thought it was allergy related. I took decongestants on the plane over to China but my ear pain was bad. Long story short, I ended up a week after the initial pain with facial paralysis after getting off a flight. I saw two doctors in mainland China and a western trained specialist in Hong Kong who finally got the drugs I needed. I was given mega-doses of prednisone and acyclovir. I saw improvement fairly quickly with the paralysis. I got back to the States 10 days after the onset and saw my general physician, eye doctor and neurologist where I was diagnosed with RHS. I am now almost a month after the onset of the paralysis. While my face is getting better (I still can't blink properly and my smile is about 60% better), the ear pain is excruciating. I am on Vicodin and also take Tylenol 2 (Solpadeine). I am doing acupuncture every few days which helps. Sleeping with a heating pad also seems to give me some relief. Lidocaine ointment did nothing. Cold weather, wind and noise are deadly for me. I just want the pain to end.

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.

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.

Comment from: Propfilm, 45-54 Male (Patient) Published: May 16

I've been through the shingles in my ear and Bell's palsy on half of my face, due to Ramsay hunt syndrome. It lasted about 14 to 16 days in all. It was terribly scary. Everything cleared up, but I'm left with a very strange vibration and dizzy feeling on, what I think, is the affected nerve. Pulses of vibration shoot through my head especially when I chew or clench my teeth. It's driving me nuts. I'm on Lyrica as per neurologist, but don't know if it is working, and side effect is dizziness. Go figure!

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.

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!

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 (continuous positive airway pressure) machine nightly. Doing my own research, these conditions are due to vitamin B 12 deficiency.

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.

Comment from: joyanne, 75 or over Female (Patient) Published: September 06

I had a 3 month siege of Ramsay Hunt syndrome in 1994; only a small amount of the paralysis is apparent now. Six weeks ago I developed a herpes blister on my left lower lip (the same side as the Ramsay Hunt. The initial swelling and soreness are gone, but a lump in the lip at the site is still visible and I'm developing white lumps on the inside of my lower lip. I wonder if this can be related. Nothing available on post Ramsay Hunt challenges.

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.

Comment from: ML, 45-54 Female (Patient) Published: October 08

Use an earplug if you have inner ear pain and sensitivity to sound.

Comment from: DIANADEE, 65-74 Female (Patient) Published: March 20

Three years ago I was diagnosed with Ramsey Hunt Syndrome. My eyes continues to tear constantly. My face and teeth hurt continuously. My ear and the back of my head hurt when under stress. By looking at my MRI, my neurologist could tell that my number 5 and 7 nerves were damaged. The entire left side of my face was affected. I had just turned 65 years when this happened. I know I will never be the same.

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.

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.

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.

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.

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.

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!!

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.

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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