I’d like to say that I wrote about my experience with Ramsay Hunt Syndrome for humanitarian reasons, maybe to share my story with other people suffering from the early phases, but those of you who know me would see right through that lie. I wrote that post to close out a chapter of my life and put the disease behind me. Unfortunately, those of you who have suffered through the disease know how unlikely that is.
When I wrote it I certainly never expected that post to become one of my most read posts. I’ve watched the people coming to my site to share their experiences and felt bad for every person reading that post. Whether they are reading it because of a relative, loved one or for themselves, I know Ramsay Hunt Syndrome is about to make a lasting impression on their lives.
I’m not a social person. I was the proverbial president of the chess club and that might be all the explanation you need to know about my social life, I don’t willingly interact with groups. When I’m sick I want to be left alone and when I’m well I want to forget about being sick. That might explain why I’ve never been to the Ramsay Hunt Facebook site and why I’ve never been to the RamsayHunt.org sites. I offer those sites because several people have suggested them as providing support and social interaction but I won’t be showing up at either site.
Three years later most of my symptoms are gone. I still have a slight amount of facial scarring and an ear that functions almost as well as it used to but always feels like it has a slight pressure differential. The facial itching has stopped. It’s the memories that haunt me. Whenever I have an earache lasting more than thirty seconds, memories of intense pain come flooding back to me like a never ending nightmare.
When my wife came down with an earache unaffected by antibiotics, I was terrified at the thought of her having to go through the same experience. She has no idea how relieved I was when my EMT specialist told her it was caused by a very bad allergy and was able to start treatment that day.
Sadly, I understand the fear and concern being expressed by the people leaving their own experiences with Ramsay Hunt. I consider them comrades in this experience and sincerely hope that they will all have full recoveries. Reading some of the comments and realizing that my experience was only a pale shadow of what they have suffered, I feel grateful that, despite their pain, they stopped here to share their experiences.
Unlike my typical post, I’m writing this post to address a very few of my Ramsay Hunt visitors. I’ve had several of these visitors subscribe to my blog after reading only that single post. I certainly don’t mind people subscribing. I spend a significant amount of time writing and illustrating my posts, I want people reading my posts. The problem is that my only connection with these people is our Ramsay Hunt experience.
I won’t be writing another post on Ramsay Hunt Syndrome, that chapter of my life is behind me. I hope that people gain comfort by reading my experiences and realize that the pain doesn’t last forever, but I don’t intend to let Ramsay Hunt define my Internet presence or my website. I have too many other subjects just waiting to be written about.
I’m grateful to the people who take the time to post their own experiences, despite the suffering they are experiencing. I’m grateful to the people who subscribe to my blog. Your subscription suggests you enjoy what I write. For those of you who have done both, I appreciate your comments and your subscription but as of this post, Ramsay Hunt Syndrome represents less than one percent of the content on this website and that percentage will only get smaller.
Here’s hoping that all of you have full recoveries and will one day regard Ramsay Hunt as nothing more than a roadbump in life. That’s certainly my intent.
© Copyright 2015 Byron Seastrunk, All rights Reserved. Written For: Opinion by pen
I returned from 10 days of snorkeling In Belize and developed a painful R ear. Thinking I got an infection from the sea water I saw the Dr who said your ear is clear and no infection. The next morning I woke with a strange sensation on my face right side. I was taken to the ER and the Dr ruled out stroke and diagnosed RH2., 10 days of antiviral sand prednisone. Now 3 weeks out I can’t close my right eye so I keep it patched to keep from drying out. My face is droopy and still paralyzed. Since most Dr.s seem to have no experience with RH2, I have begun acupuncture and therapeutic massage in an effort to get relief. My dizziness and balance have gotten so bad that I throw up. My concern is the balance issue since I must work and need to drive to get there. How have others dealt with the extreme vertigo and nausea? I would hope no others will ever have to endure this vicious virus. Suzy
The dizziness is a result of damage done to the cranial nerves by the virus. If you don’t have anything locally, check online for vestibule excersises. They will help train your brain to remap. That may be a 3-6 month process. Use a cane when you need to, lots of eye drops during the day, preservative free.
Recovery can take up to 2 years, well as good as you can get recovery.
Vestibular therapy helped me… it took me approximately two months to feel I could walk on my own…your brain has to be retrained after having Ramsey hunt syndrome.. the eye exercise is very important
Hi Kim! Are you able to continue to work as a nurse? When we last communicated, you were not sure. I hope you are doing well!
Hi, I did try and go back to wirk. My manager came to me and asked me to go off sick to try and get better.
I’m in vestibular and facial therapy showing positive results. I’m aiming for a return to work in the fall.
I have been going to vestibular rehab for 10 months now and just stopped using a walker but every turn of my head and changecif position still brings on that swoosh feeling! Are you just doing facial exercise movements or is there another therapy? I was told there is nothing else I can do other than the repetitive facial movements …praying lips raising eyebrows etc…but I have regained little to no function after now a year.
Kim I’m glad you are getting positive results with therapy. May you continue to improve!
Suzy I am one year post RHS and I was in the hospital 60 days and then in out-patient vestibular rehab learning to walk again and just being able to walk without a walker with still having major balance problems. Post one year I am have significant deficits in my right eye, hearing, taste, facial paralysis and balance. The doctors say I was the worst case they have seen and I will say I I could have died I became so ill from it while I was hospitalized. It has forever changed my life and I am in counseling trying to accept and cope with accepting the person I am not and letting go the person I was before. It is only by the grace of God I continue to push through the many challenges everyday and a miracle from God I can ever laugh and still find pleasure in life after this evil virus….anyways count your blessings and celebrate each and every victory in recovery no matter how small, but only you and the survivors of RHS will ever understand the true impact this can have on a person emotionally, physically and spiritually!
God bless and may healing come quickly and fully to you.
I got Ramsey Hunt October 2016. I had almost complete paralysis of the right side of my face. There has been some improvement but I have had every possible symptom and it has taken months for even the smallest progress. I did try facial exercises, but I tried to do them without realizing that there are risks if done incorrectly. I now have a hook smile that someone else mentioned on this post. The muscles pull my face up on the affected side into a half smile,which greatly affects the symmetry of my face. Now for the really bad news. Yesterday I noticed the shingles on my right ear have started to return and I do not know what to do. People with facial paralysis from RH need to find a physical therapist who specializes in RH. But I could find no one in the NY or CT area. I do not want to take the anti-virals and steroids because of side effects. Also I am looking for a good plastic surgeon or dermatologist that specializes in RH. Thank you.
What side affects are you concerned about… I was hospitalized for 60 days and was on steroids for weeks and on iv antiviral for 3 or 4 weeks. I was so ill…the virus destroyed 4 cranial nerves and even had upside down vision and list the ability to speak when the virus was at its peak. I stopped eating to the point of almost getting a feeding tube. Anyways now 1 year four months later I have many major deficits and most are likely permanent. The biggest reason I think I am so messed up is because I did not get the antiviral and steroids for 5 days after onset and for best outcome you need to start them in 72hrs after onset. Everyday I have fear I will have a reoccurrence and I will be praying for you my dear it quickly reverses in your case.
Thank you for your reply and for your prayers. I am worried about damage to my kidneys. My kidney function may not be very good, and my red blood cell count is high. I have had an autoimmune disease for thirteen years, so I started out with problems. I had never felt so sick in my life as when I started taking the meds. With the exception of the pain in my ear, I felt fairly normal in the ER. After taking the meds, that is when the nausea, vomiting and vertigo started. I also suddenly lost my hearing in the right ear. For three days I could not walk because the vertigo was so bad. While taking the drugs I was always in a state of confusion. The doctor said it was a typical reaction when using steroids. Till this day, I have memory problems.
We def have a lot in common! I was diagnosed 4 years ago with partial autonomic failure and POTS and was only struggling medically when I got RHS. I was just in hospital for 12 days for a blood clot in my leg and I was mega dosed with steroids because if an allergy to the MRI dye. I had multiple MRI while in hospital for the blood clot and stent procedure. Within 24 hours after discharge I was back in hospital withshingles/RHS. Doc thought the mega dose of steroids probably lowered my immune system enough to activate the shingles. Funny how the steroids may have been the cause and yet they mega dosed me again with steroids and anti vitals to treat it. I was gravely ill while in the hospital for RHS so it’s hard to differentiate what symptoms were from what meds during my 60 day hospital stay. Four weeks of the 60 days was in patient rehab to learn to walk with my ongoing verigo and balance issues that remain to this day 1 year four months later. I suffer with servers memory and concentration problems like you and just back to the neurologist to demand a repeat MRI to rule out any residual structural damage that may be seen from RHS as well as I asked if the mess could have caused these additional problems. Do said unlikely the meds but I don’t necessarily believe it because you could never really know. I am starting counseling weekly to try to manage the stress of the medical and psychological problems the RHS has impacted in me. It’s not an easy journey but I survived the worst already and university docs said I was the worse case they had ever seen so it sounds like we can count ourselves true survivors and have to keep drawing our strength from within and from the good Lord!
Checking in to see how you are doing with the re-occurance of shingles?
Suzy don’t wish this upon my worst enemy…I’m so sorry you are dealing with this…my life was turned upside down literally…I was hospitalized for 60 days and it was looking at one point I could have died!! My nausea could only be managed by iv anti nausea Medd in hospital and my severe vertigo lasted for months …it’s been almost a year and half and still have to use a walker occasionally and it’s an exhausting tasks to walk or turn and remain balanced., my face never recovered only a small area in my check. My heart goes out to you and all who have to work because for some there is no quick or full recovery and I was already on SSD so I didn’t have to worry about money on top of everything else. The daily mild vertigo is more of an emotional challenge accepting this might be my world now trying to navigate a swaying moving world. In the end I know there are still worse things, medical conditions and terminal illnesses. Through it all I still find purpose and reason to live on and work daily on not looking back, but looking ahead at my new normal.
Unfortunately, I had an accident and hit my head very recently. The vertigo that I experienced briefly last year, came back, and it has been bad. I had a bloody head and a big lump and still feel very out of sorts. I also hurt my back and neck and TMJ. This vertigo seems to be more related to the concussion than to RHS because I did not have these symptoms since last year after taking the meds. My biggest problem related to RHS before this happened was the paralysis in my face, and trying to live with it. Now I am dizzy all the time and have vertigo when I change positions.
Does anyone know of a treatment if a face has regained some movement but is now asymetrical? The affected side of my face now pulls upward as a result of the facial exercises. It causes the affected eye to close more than the other eye when I smile, eat, speak, and my cheek is pulled into a smile upward so it looks like my cheek is swollen on the affected side. Are there any treatments for this – botox, plastic surgery, electric stim, etc. I still have partial paralysis, but the lack of symmetry makes it look even worse.
So sorry about the head injury and hope you got medical attention as vertigo after a head injury can be very serious. Regarding some or your questions, I can safely say the pulling upwards and thickness in your affected side is not likely from facial exercises or anything you did. I have almost total facial paralysis since my RHS almost 1 1/2 years later and have never been able to do any facial exercises because my face doesn’t move. However, my face went from droop to pulled up and thinkened around the cheek and under my eye…. this is from atrophy of the muscles that have been unused not over used.
My right eye shrunk my right cheek is thicker, and my right corner of my mouth is pulled up and back (hook mouth I call it). Botox can definitely help the asymmetry but my doc said there is a very small percentage of people who had a shingles reoccurrence after Botox and I have decided to live with my face than to take any chance of a reoccuance. There are cosmetic injections that I may consider for my chin because only one side if m chin muscle works it became bigger and some protrudes out when I move my move or try to smile so maybe I will have some filler put in the other side to even out but I haven’t gotten a consultation yet.
Hello all… I had RHS which hit me really hard on the 16 November 2016 and I landed up in hospital. Today, 24 April 2017 I am still recovering but it is a steady but sure recovery. My paralyses heals in fits and bursts and the improvements are only minute but I see them, and may I add that I always feel worse before there is an improvement. I had very severe vertigo which kept me off my feet and off my food for a few weeks but that has also eased off and while I still have vertigo, some days worse than others, I am able to continue working, like all of you my right eye plays up and currently weeps a lot but that is better than the dry burning. As the paralyses wears off and my right cheek starts moving again, it cramps into the opposite direction and half my smile stays hooked on my face, really strange feeling along with the continuous tingling and pins and needles I get very tired though. What has helped me is taking garlic oil, yes garlic oil believe it or not. I hope for a full recovery…
Hi, it is interesting about the garlic oil, even after 8 years my right eye always has a tight feeling ,also still have a muffled ear & occasionally vertigo , I take travel sick pills for the vertigo..,,,much more of a problem when I am stressed or tired. I will ask my local pharmacist her opinion.
Wow I can’t believe you can work with the vertigo…I’ve been in vestibular rehab for 10 months and still occasionally need to use a walker. MRI showed damage to cranial nerves 7,8,9 and 10 so it wreaked havoc on me. I have the hooked smile but I’m 1 year post and because my nerves in face never really came back the muscles are atrophying and shrinking so I am getting the opposite from dropping as you said…it’s pulling upward and tight. It still looks better than drooping but def not recovering the use of my facial muscles accept ability to close eye which was the absolute most important thing and just the corner muscle of my check nearest my nose pulled up a bit when trying to smile. Still can’t smile well it’s a total crooked smile and that has been a big emotional hurdle as I was always one to smile and something that stood out about me.
Hi all, I was diagnosed with RH October 20th of 2015. I just wanted to share my lingering ailments post 16 months. I still have a bit of paralysis on the left side, nothing you can really tell by looking at me, but my smile is still off and I can’t whistle any longer. Food is still more of a chore to chew on the left side. I’m experiencing synkinesis while eating food from time to time. My affected eye dries out at night and I have fairly regular muscle spasms in my eyelid. I’ve also noticed that anytime I’m not completely relaxed, whether it be my eyes straining, or my jaw tensing at all I will get a ticking noise in my ear. I hope you all heal well!!
I’m post 13 months and same thing movement around eye or moth musckescpriduces a flutter inside affected ear. Also my eye essentially dies not produce any tears so from day one till now I must put artificial tears every 20 min during wake time and a gel in it at night to keep ur from drying out. Chewing is a chore for sure keeping food from falling out the weak corner of my mouth but also I drop and knock things over frequently due to losing depth perception which I havnt seen anyone else share about this…
Have any of you had double vision involvement.?
No, I sometimes have trouble if the eye is too dry or there is too much liquid.
Me too Kim
Not me but I’d say it’s possible. My eye sometimes feels dry & other times it is watery.
Thank you so much for this blog! My name is Melanie & I am 1year post RHS. I’m 54 years old & a nurse practitioner. My lingering symptoms are tinnitus & hearing loss, partial paralysis, balance issues, dizziness, fatigue, & all are worse with stress. I am able to work full time but I have to remain hydrated & pace myself with breaks.
Has anyone experienced short term memory loss as a result of RHS? This may just be my aging process! Lol!
I am so sorry that any of us have had to go thru this horrible condition… yet so thankful to be alive & able to work.
I am adjusting to a new normal & making the best of a bad situation.
Thanks again for this blog- it does help to hear from others with RHS.
No,No memory loss, not that I know of.☺️
I too am a nurse working full time. How long have you been battling this? The hospital has given me 6 months to get better.. if not I may loose my job because of the poor balance. You encourage me.
I just reread your comment….maybe I should say “yes” to the memory loss.
Kim- I’ve had RHS for a year now. My symptoms have improved but as I mentioned before, most still linger. As for my balance, i compensate by touching furniture or a wall to reorient myself, i don’t try to stand in the hall or in a patient’s room without touching something to maintain balance. Walking is usually fine but I don’t walk really fast. No sudden turns either! Lol!
I have a Yeti to keep ice water available all day & I go thru it at least 3 times in a shift. You have to stay hydrated or the symptoms get worse.
I was back to working full time by 6 mos & I think you can do it too. You will adjust & compensate.
Glad to be an encouragement!
All my post 1 year deficits align with yours and some…regarding memory yes I and my family are deeply concerned about my severe short term memory loss and sometimes extreme distracted behavior I just made an appt w neurologist to see what they think if there is a connection. I mentioned to my family doc and pt but nobody takes me serious it seems. It’s so bad it’s getting dangerous like burning things in the stove because I forgot I was cooking, or not remembering conversations or activities I just had or did in the last 24 hours etc. I am also seeking cousikung therapy now as I am struggling with anxiety and depression because of this. It’s like you just fought to hardest battle of your life and one year out my brain has just decided to try to process it all …and by the way accept your new reality that you are far from recovered after more than a year. I guess it’s more than my brain can handle and hope my memory issues are related to more psychological stuff than any physiologic damage from the virus.
Glad to see there is a support group here.
I developed RHS Nov 07,2016. As a Nurse I figured it was a case of Bells Palsey. I too did the emerg route and only received the high dose of Prednisone. Since anti vitals are not indicated in BP I did not receive them. There is a short window of 72 hours in which to start the antiviral , after that they are nor effective.
My GP has never seen a case of RHS neither has his colleagues. It wasn’t until I was searching the internet to see what else I could do when I discovered RHS. The light went on, here was all the other symptoms I had that did not match BP.
Here I am 3 months later with no improvement. I’ve seen ENT, so I have hearing test to do as I’ve lost hearing. Neurology has told me the virus destroyed the 7th cranial nerve so that is why I have the facial paralysis. My eye still does not close and I am looking at surgery to bring up the lower lid. If it does not close they will either sew the lids together partially or add a weight to the eye lid.
The 8th nerve is damaged, so that is why the hearing is diminished and the balance is off. I use a cane when I’m out. I find I’m ok if I’m walking straight and there is not a lot of visual stimulation. If I go to the mall with people all over the place I can’t stay very long, it throws my balance off.
I’m told my case is severe.
Neuro is sending me to talk to Neurosurgery. There is a procedure in which the nerve for the tongue is disconnected and attached to my face so it will move again. The sacrifice is my tongue will partially atrophy. I can also wait 2 years to see how much recovery I’ll get. He tells me it will take that long for the healing to reach my forehead. But my face muscles may not be able to wait that long, they may atrophy in the mean time.
I’m jealous as I read the posts of others. I want to be better then this. I am trying to work FT as a nurse. I am modified , the hospital gives me 6 months to get better. I’m looking at losing my job right now, or long term disability.
Has anyone had any surgeries?
HI Kim, I used to tape my eye shut & wear an eye patch, also I put a liquid gel into my eye to keep it moist. My ear is still muffled after 7 years but more so if I am stressed or tired. It is a deadly virus, I wouldn’t wish it on anyone.
Yes I have had to do that too. How long did you have to do this? I am looking for an end to this.
Be prepared for about 6 months but the fallout from this virus seems permanent as in muffled ear & tight eye!!
Were you offered surgery to help with the eye?
I’m also finding my balance off. Do you have that as well?
I know I’ve lost some hearing I have a test for that coming up soon.
No I have never had surgery suggested but I know myself that if I lift my eyebrow the feeling of having a line down my face lifts so I constantly wonder whether I should consider an eyebrow lift I guess only a neurologist could answer the question of whether that would help obviously the feeling is caused by nerve damage. I was lucky enough to have someone lend me a tens machine for the face , the discs were placed above the brow & mouth to stimulate the nerves into remembering that they had to go upwards!! I was very lucky or my damage would be visual as well.
It’s nice to read about other experiences and I’m glad I stumbled upon this blog post. Unfortunaltey I hate to say that some stories have struck more fear in me than hope and it sounds like I might not see the quick rebound from this that I hoped for.
It’s past midnight and I have no hope of falling asleep with the feeling of an ice pick being driven into my ear and a burning sensation around my lips and chin.
My symptoms started two days ago as numerous canker sores on the inside of my bottom lip and I was lucky enough to get to the doctor on the third day of progressively worse symptoms when I couldn’t ignore the discomfort any longer. I got lucky again when the doctor diagnosed it as ramsay hunt syndrome right away. By that point I had the typical symptoms of throbbing earache, fever blisters on my lip and in and on my ear, face numbness, burning, sensitive teeth, etc. the doctor admitted that the canker sores were a little odd and not as common as fever blisters outside the mouth RHS. I had both anyway.
I left with a prescription for Valtrax and Prednisone to take for 5 days and took my first pills today. I’m sorry to say that the doctor did not prescribe any pain medication and as I lay here in agony I wish I had known or the doctor had anticipated the painful journey I was in for. It is possibly one of the most painful experiences of my life.
Being the third, and I’ll add, most painful day I’ve had, I’m afraid I’m just beginning this journey. I don’t typically post on the internet but I felt like I should share my early experiences after reading the accounts of others, that if anything, let me know I am not alone on this journey and will survive. Best wishes to all fighting this disease and to a full recovery.
Thanks for sharing your experiences. The pain probably will get worse for a few days but you will get past that. My doctor and I agreed on over the counter Tylenol, in part because I refuse to take anything stronger. I’ll admit I exceeded the recommended dosage a few times, after discussing it with my doctor. He gave me the go ahead as long as it was only short term. I wish you good luck in recovering and hope you avoid some of the more serious long term symptoms.
My husband had your type of shingles 8 months ago. Lesions caused his eardrum to rupture; he had slight face paralysis on one side , one sided facial lesions & lesions throughout his scalp. He also had mouth sores which he still has & the only thing he can taste is salt & everything tastes salty.
Add to this , his intestinal track doesn’t give him an urge trigger. He was very active , &, is no longer so. I come from a family of doctors & nurses, & , our own internist doesn’t appear concerned & he’s really a good doctor that we’ve had for 16 years . He has had bloodwork taken , all the extra bells & whistles at the hospital & my husband is waiting to see the gastroenterologist later in the month.
This is truly frustrating !
I had RHS 8 years ago, I still have ongoing symptoms from this awful condition . I regularly feel dizzy, which in turn throws me off balance. I know if I am stressed or tired the symptoms are worse. I can still see a slight pull of my mouth to the right, although probably I am the only person who can see it, it’s not massively obvious, only to me as I live in fear of a reoccurrence!! I often wonder if this is normal to still have these problems after so long ?
I also went through tuff times lasting 3 month, having to learn how to walk a straight line, retraining my brain… yes that’s behind me but have you been told how long to wait before getting the shingle vaccine … there are different answers out there
2008 I was diagnosed with rhs. Was told how rare I was as I had no rash yet I had every other symptom possible. Everything was salty, ringing in the ear, migraines, everyone sounded like they were talking under water, my eye was blurry and the pain. I felt like someone was trying to crush my skull.
I spent a year “rebuilding” me.
I can’t even remember how long it took to heal. Altho I could see signs nobody else outside of the Dr’s in my life could see.
2016… here I am self conscious and aware I am not perfect from my rhs but have put this way beyond the back of my mind.
Poof!!! I wake up on my birthday needless to say…. rhs is back!!!! I remember the pain of having it feel like someone was jamming a stick in my ear, everything tastes like a pound of salt!!!
2017 here I stand 6wks later… looking for answers of how long will it be so I can close my eye and see properly and have a face I can control. I still drink out of straws. I can finally drink slowly but a straw is easier and no mess.
Am I the only 1 in this world that has now had 2 “attacks”?
In what time frame do I accept this will be me permanently til the next event?
I have read of numerous people who have gotten RH more than once. Some people even get it on both sides at the same time. I am so sorry you are going through the beginning stages again! I am 4 years out with ongoing pain and paralysis.
Hi, I have had six outbreaks since July, 2016. My first diagnosed out break was 2004. My second 2013. Each and every time I sought medical attention. The first time, I was told I needed to be on acyclovir for the rest of my life. I took the RX for one year, and discovered how hard it is on the kidney’s, so I quit. At the end of the year, I thought I was fully recovered, however in the ensuing years the left side of my face started drooping. I did not make the connection to RH, because even though I consulted 2 ENTs, they never used the term RH, they just said shingles above the neck is dangerous. Sooo, not knowing I had RH, decided to get plastic surgery. I told my plastic surgeon that in 2004, I had shingles in my left ear and was told “no worries, you can only get it once.” Ha! Since 2008, when I had the facelift, I am in insane pain. I was vaccinated in 2013, right after the 2nd outbreak, at which time I was told I had RH, and again went on acyclovir. At no time was a steroid offered as part of the treatment. I also learned that the standard of care since 1995 is that all former cancer patients should be vaccinated every 10 years for shingles. Well, I had cancer in 1995 and have had 3 oncologists in the years since, and was never told or offered the vaccine. So much for follow up care. I did get the vaccination in 2013, after the lesions cleared, and have now been informed that this was a mistake, that I should have waited a year. Also, the vaccine is only 50% effective, regardless of when you get it. When the outbreaks started again in 2016 following a minor surgery, all I was offered was Famvir, and lidocaine. When this nonsense started, I went to a University teaching hospital, I have top notch insurance, and I have long since lost count of the doctors, I have seen. They don’t know jack about this. A warning to all RH patients, based on my experience, avoid surgery if possible. I have to have yet another surgery, which I am delaying, but when the time comes will start taking acyclovir a week before surgery. I will report back if that helps. One month ago, I started weekly Vitamin C cocktail IV’s once a week at $165 a pop, together with daily 1 hour Hyperbaric oxygen treatments at $125 each, all out of pocket, even though I already pay $16,000 a year for insurance. After 4 weeks, I am starting to get some relief, and will continue with another 4 weeks. There is no health care in this country, this is a racket and I have been fleeced. 7 out 8 people getting just the vitamin C cocktail IV, got pain relief after just 1 session. Now, that I know more about this disease, I realize that I have had this since college or over 40 years. Back then they said it was a reaction to earrings, and to either stop wearing them or use only 18k gold. BUT get this, the so called allergic reaction to my earrings started right after I had my appendix out. Hope this helpful.
Hi I was told I had one of the worst cases the university docs had ever seen and was hospitalized for 60 days ..almost died fromit with now life altering damage now post one year RGS. …I can surely empathize with you in this! Why do you think surgery is bringing a reoccurrence…I am worried about that and myself have a small gyn procedure coming up under anesthesia.
Having been virtually pain free from this virus outbreak for 6 years, thought no more of it when 6 weeks ago developed a sore throat, swollen tongue & mild earache, disappeared after a few weeks to then return with severe earache on other side of face, and again swollen throat & sore swollen tongue, doctors fobbed me off and told me to take pain killers! 2 days later, half my tongue went numb, lost taste sensation of all food and ear pain moved to behind ear up to top of head, whining intermittent stabbing pains. Then the penny dropped, I googled my Ramsay Hunt symptoms, yes it was back, am now on 4000mg of anti vitals for 7 days and 30mg of steroids for 5 days, head pain gradually decreasing, but, increase of slight facial droopiness is appearing, fingers crossed will all go away gradually and not increase any more. I feel for anyone who has had or is going through this or has to live with the effects. Be strong, keep going back (have never been to my doctors more in 1 week ever!) remember to push for steroids and anti vitals, don’t let them fob you off.
Thank you for sharing your story. I think all of us fear a return of Ramsay Hunt and you’ve provided evidence that our fears are real. Here’s hoping your pain disappears quickly and you have a full recovery.
I too have suffered from Ramsay Hunt. It started right after Christmas 2015. I was out of work with extreme vertigo and pain until March 2016. The vertigo eventually went away over the next month but my ear would still hurt from time to time. Just recently, the vertigo has returned! I am definitely tired and under a lot of stress at work. I am so afraid it will be here to stay.
I think everyone fears a relapse. I have flashbacks of fear everytime my ear gives a slight twinge. The final word should come from your doctor, I’m only speaking from experience and fortunately I avoided the vertigo but even after a year my ear would start hurting if I was tired or stressed. People do heal at different rates and your doctor is your best resource. Aside from my best wishes that you get through this period quickly I can tell you that five years later I no longer have have any stress related pain.
i just turned 70 yesterday September 28th 2016. When I was 45 i got Ramsay Hunt and was left with severe hearing lose in my left ear. At the time I remember the nausea and the bell’s palsy. They both went away after 3 months.
Every now and then I get the same feeling of nausea and headaches. Is it possible to get these symptoms after such a long time?
You might ask me again in 20 years. After three years, if I got stressed or very tired, I felt the pain and itching. After five years, I only have the scarring on my face to remind me. It’s certainly possible but I would suggest checking with your doctor to be sure. Thanks for taking to time to share your experience.
Does anyone have a ongoing pain in their neck? I crack mine and it seems to relieve the pain. I do have vertigo and tinnitus and my smile is 70%.
I don’t remember a pain in my neck but I do remember having great difficulty finding a position I could sleep in without making the pain worse. Your neck pain could be related to the way you hold your head or the way you sleep. Here’s hoping your symptoms go away soon.
Yes Justin, I have pain on the affected side which makes me feel like i need to roll my neck and crack it. I got RHS May 2015. Been struggling, doctors that I have seen are not helpful. All they can do is prescribe pain killers or the Gabapentin and nortriptelene, which for me just made me mentally unstable. Daily I suffer with pain because I just cant find good treatment.
Hello, I’m Laura Benoit from Anaheim CA. Like Byron my RHS started with an ear ache in my right ear. The ear started to swell too. The stabbing poke into my ear turned into a constant burning pain. My scalp and hair felt as if they were on fire. After 4 days of this I went to a doctor (Tuesday). He thought is was an ear infection coming on, even thought the ear drum looked good. Sent me home with a Z-pack and decongestant. The next day I called back, “what about the pain?” When this kind of pain is so close to your brain you can’t function. It’s now two days later, I’ve called out sick from work, I’ve got a stocking cap on and am stuck in my bed with the pain. Went again to the doctors office, saw a different doctor. He looked at my ear, as it had started to scab over, they were inside and outside of the ear. It sounds like bugs crawling in my ear as the scabs leaked down my throat. Have you ever had chickenpox? Yes, I’m in that age group born in 1951. He states that he thinks it’s shingles in the ear. Sends me home with antiviral meds taken 5 times a day, plus a pain killer with Codeine #3. I continue to suffer on Friday. Saturday morning I wake up remove the stocking cap, look in the mirror to find the entire right side of my face has slipped down. Thinking I’d had a stroke, I went to our local ER. The ER doctor was a life saver, he knew what it was and what had happened. But he did order a CAT scan and a MRI to be sure. He called an infectious diesese doctor, a muscle skeletal doctor and a neurologist. They all agreed, I was to be admitted into the hospital right there and then. This was Saturday May 28, 2016 (Memorial Day Weekend) With two IV pumps they gave me a steroid and antiviral for the next seven days. Vertigo was my world. Once released from the hospital I remained confined home with active contagious chickenpox/shingle, not allowed to drive. The hospital is where we heard about Ramsay Hunt Syndrome, and it’s Bels Palsy effect to the face through the attack on the facial nerve. Oh, I forgot to mention that I had a shingles vaccination two years ago!!
Now it is July 9, 2016, my ear still hurts, my face has tingles over the eye and my lips. It’s swollen like a puffer fish. My smile is a smirk and my right eye won’t completely close. I lost my taste buds, it was cardboard or some other off the wall taste. I had to relearn how to suck on a straw. Only 3% of the population get RHS, wow aren’t we lucky!
Thanks for sharing your experiences. I wish I had some words of encouragement for you. I remember how I looked at that stage and how long it took for the swelling and tingling to go away. If there is a good side to this, it’s that you have probably experienced the worst of this and the rest is a matter of getting better. I do appreciate you mentioning that you had already had a vaccination. It makes me wonder just how effective they are. I’ll wish you a full and speedy recovery but we both know it will take time to recover. Just keep in mind that it’s slow but most of us have a full recovery. There’s a lot of people out there that have already gone through this and we all want you to recover.
I had the disease when I was 19 and needed decompression surgery when my facial nerve died. I am now 55 and went out on disability 6 years ago. I had permanent vertigo that never stopped. It grew worse as I aged. Xanax and meclizine have been my life for 20 plus years to walk and function. I regained about 70% facial movement but the distortion is there and hard to live with. I also have constant tinnitus and neralgia pain stabbing in my ear and scalp now. Horrible disease
Thanks for the support, I live in Connecticut . I am going through this tuff Ramsay Hunt Syndrome and making progress in a week. I have family and my girlfriend who is being a great support to me . ty again for the blog.
I can’t tell you how sorry I am that you’re suffering through this but I am glad you were able to find comfort in my blog. I want to thank you for leaving a comment, allowing others to take comfort in your recovery. May your recovery be a speedy one.