In April 2018 I was struck by Ramsay-Hunt syndrome, and half my face was paralyzed. For about two months I had to somehow struggle through a new job with my face sliding off and my entire body completely exhausted and stricken with pain. I recovered over the following year until my face was about (in my estimation) 90-95% better, and probably no long term consequences. Then two weeks ago this awful condition hit me again, though this time I felt it coming, got the treatment early, and avoided any serious trouble. After this last 18 months of face-eating hell, I feel like I’m an experienced Ramsay-Hunter, but when I was trying to understand this disease last year I found precious little information on the internet about it. So, I have decided to use this blog for what blogs are good for, and to give my experience of Ramsay-Hunt Syndrome, as well as some suppositions and general suggestions for dealing with it based on what I experienced, my own hazy research and discussions with different people. Ramsay-Hunt Syndrome (hereafter referred to as RHS) has a very wide range of effects, if the internet is to be trusted, and a lot of them are pretty subtle and unpleasant. So I’d like to outline here what I experienced, some things I think about the disease based on my experience, and some stuff I picked up around the internet. To be clear if you read on: I am not a doctor, I have no medical advice for you, and if you’re coming to me for medical advice you’re in a dire place. This is just my experience, and you should not use it as anything except supportive anecdotal knowledge. Nonetheless, I hope it will help you. If you have experienced RHS yourself and want to add your own experiences in the comments, or are experiencing it and have questions (or want reassurance) then please also comment.

What is this godawful disease?

Ramsay-Hunt Syndrome is basically shingles inside your face. It is caused by Herpes Zoster (shingles) which is a consequence of being infected with chicken pox when you were a child. Basically the chicken pox reactivates, but instead of coming back as an intensely painful rash on your skin (as happens with most people) it comes back as a vicious, cruel, and completely godless infection of your facial nerve. Once it gets its hooks in it does the following things:

  • It causes intense pain in the back of your neck/head/jaw, that is like no other pain you have experienced
  • It causes a rash in one of your ears and/or your tongue
  • It paralyzes half of your face so that nothing moves. Nothing.

This facial paralysis is the worst part of the disease, because it completely disables half of your face, which makes speaking and eating difficult, and also stops you closing your eye[1].

There is no cure for this disease, because it’s one of the herpes family, a cluster of diseases that were designed by satan to annoy human beings. It is easily treated into remission however using acyclovir, an anti-viral drug. If you’ve had cold sores or genital herpes then you’ll probably be familiar with this family of stupid little viruses and their treatments.

Chickenpox is very common, since the vaccine was only available in 1984 and isn’t on the mandatory vaccination schedule of many countries. So if you’re older than about 38 years old chances are you had it, and if you are younger than 38 but from one of the many countries that don’t (or didn’t) have the vaccine in their schedule you may well have had it. If you’re like me you carry the scars of that idiot little disease on your face, but if you don’t have the scars you may not remember if you ever had it, in which case check with your parents. You need to know what’s coming for you.

The common view seems to be that RHS is triggered by stress, just as shingles is. So if you had chickenpox as a kid there’s basically only one way to prevent it: don’t get stressed. Hrmph!

Also RHS is not the same as Bell’s Palsy. Bell’s palsy is a sudden paralysis of the facial nerve, but it doesn’t come with the rash and intense, unrelenting pain, and it doesn’t do the other dodgy shit that RHS prides itself on (see below). I had Bell’s Palsy about 20 years ago, probably as a result of stress in combination with some stupid infection. Bell’s Palsy is a walk in the park compared to RHS.

What happened to me?

So let’s describe my experience. I was just finishing an extremely stressful job where I had been bullied for years by the most vicious pig of a man you can conceive of, and had secured a new job. I was taking a few weeks off and exercising daily, doing two hour morning kickboxing sessions. One Friday in mid-March I visited my new employer to fill in some forms and was informed that my job was guaranteed and I would definitely be starting on 1st April. When I left the workplace I could feel the stress falling off of me like water, and my spirits uplifted, really uplifted, for the first time in a long time. Since I had been training all week I was tired and I had muscle pain in my left shoulder but I didn’t think much of it.

On Saturday morning I woke up relatively early to go to role-playing, and noticed in the bathroom mirror that my eye and face was a bit weird, but I again didn’t think much of it. It was a bit weird but I’d gone to bed late and I think I’d been having celebratory drinks, so I just figured whatever and headed off to role-playing. By the time role-playing started two hours later I was in great pain that intensified over the day. At first I assumed it was some strain from kickboxing, but by mid-afternoon my face was beginning to fail and my speech was noticeably slurred. The pain by then was intense so I was icing the spot and trying to keep my shit together (fortunately I was playing not GMing). My friends started suggesting the possibility that I was having a stroke (I was 45), but as my face slid off I realized what was happening, and assumed I was just having a bad bout of Bell’s Palsy, brought on by the relief of stress on the Friday[2]. Since I’d experienced Bell’s Palsy before I knew what needed to be done: I had to go to a doctor to get some eye drops, buy an eye patch, and wait a few months. A pretty depressing start to a new job but whatever. So I finished the game, went home, slept as best I could, and the next morning I went to a doctor.

So Sunday morning my face was wrecked, and I felt like an operation was being conducted on my jaw. My eye was also now open permanently so things were touch and go, but I got to a doctor by lunchtime. The doctor was a standard internal medicine specialist (in Japan this is basically what you go to when you don’t know what’s up) with a nice surgery who I trusted, and he was very sure it was not Bell’s Palsy. He made me sit in the waiting room while he booked some urgent tests at the local hospital, to rule out a stroke, but then came out after ten minutes or so to check my forehead. He made me raise my brow like a reverse frown (what do you call that?) and upon seeing that my left forehead was completely static – not moving even a millimetre – he decided it must be RHS, canceled the tests, and gave me the medicine I needed. He gave me acyclovir to kill the herpes, pain killers, steroids to help my face recover, and eye drops for my eye. I went to a local pharmacist, hit the drugs, and crashed.

Acyclovir is a miracle drug, it works on the virus fast and within maybe two days the pain was gone, but my face was done for. I had to go into my new job the next week to begin preparing classes, setting up my work space, transferring grants (which takes sooo many forms!) and so on, but I couldn’t work my face at all and also I was exhausted. I could only work perhaps 3-4 hours a day before I had to struggle home and crash. But the worst was yet to come. After 5-6 days the acyclovir finished, and the disease came back within a day – worse than before. The pain was even worse, and it was hellish. This was when the other symptoms began (see below). Fortunately my new work has a very good hospital attached, so I saw a doctor there and they told me that I had been given an older, weaker version of acyclovir, and the steroid dose I’d been given was way too low to help my face. This doctor gave me valacyclovir, which is I guess the incredible hulk of acyclovirs, and nearly doubled my steroid dose. The pain subsided pretty quickly and over the next two weeks things calmed down. By the time April finished the secondary symptoms had gone and my face was beginning to move. In May the doctor shifted me to a rehabilitation plan, and I set about the long path to recovery.

What are the secondary symptoms?

If you google around you’ll hear all sorts of horror stories about this nasty little bug. I read people saying they lost their sense of balance, that they were always dizzy, that they nearly went blind, and that their ability to think or calculate was messed up. I found this out because in that first week I noticed I was doing things that are really unusual for me, including:

  • Taking the wrong train home
  • Getting confused about where in the train platform to go to get to my work
  • Forgetting names, words and basic facts
  • Confusing chats and sending the wrong messages to the wrong people

I went to hanami at my former work near the end of March and met a PhD student who I had known for three years, who had completed a master’s degree in my department and gone on to finish her first year of her PhD: I asked her when she was starting her PhD. I sent messages for my role-playing group to non-roleplaying friends, and vice versa. Also I was getting tired very quickly, and putting on weight (which may have been the steroids I guess). I went back to kickboxing after maybe a month, and that was okay, but for the first two weeks my whole body was a mess. I also discovered, once my eye could close again, that I had become photophobic. I didn’t notice this until mid May, which is when the sun really comes out in Tokyo, and it made my eyes tear up as soon as I went outside.

I’m also sure that this disease fucked my eyesight. I am longsighted and wear reading glasses but between March and May my eyesight suddenly deteriorated so I had to get new glasses. I also thought I was seeing double, but couldn’t get anyone at the eye doctor to believe me or confirm it.

I also had small pings of pain in the back of my jaw and neck for months after the main source of horror had gone away. It was there, reminding me that I was its bitch.

In preparing this post I did some searching and discovered this review article which describes the peripheral nervous system consequences of RHS. It can do a wicked and wondrous array of nasty little things to you, many of which resolve with rehabilitation and treatment, but some of which I think are permanent.

Rehabilitation experience

Rehabilitation for RHS is primarily the task of recovering facial movement, since this is the main physical consequence of it. For this I was given facial exercises (gurning, basically) and massages to do to try and regain facial function. The recovery rates for RHS are apparently not very good – less than 70% of people get full facial recovery, and the chance declines with age of course. I did my exercises reasonably assiduously, and the facial massages, and after a year I think I got back to about 90% function. I have two remaining problems with my face:

  • If I read while I’m eating my left eye gets strained and sometimes lets a few tears out (it can hurt a bit)
  • If I purse my lips my left eye closes slightly

I can also feel a bit of plasticity in the cheek around my mouth on the left side, and I can see a little pocket of muscle above the tip of my mouth on the left side that is dead and just kind of sits there like a lump of uselessness whenever I smile. That’s not a killer – I’ve never thought much of my smile, and whatever charm I have for the ladies is built on something else I’m sure. Most people don’t notice my face is lopsided, I haven’t lost any speech or anything, so I’m mostly good.

In fact, during rehabilitation I learnt finally how to wink with my left eye, something I never used to be able to do. A career of comedy awaits …

Rehabilitation for this disease isn’t hard. I noticed that my face hurt to touch, all over the left side, which the doctors told me was because the nerves are waking up and getting aggravated, and some of the rehabilitation exercises would make my face hurt as I strained to move shit around. Just like exercising your body, the muscles were weak and underworked, and they got worn down by practice. I also noticed some parts recovered quicker than others, and sadly the fine motor control around my eyes is the slowest to recover.

The doctors also warned me against starting rehabilitation before my viral symptoms were fully gone. They told me that if you begin rehabilitation too soon you can develop bad habits, like for example closing your eye every time you bite, because the nerves learn new pathways (like how I got my new left-eye wink superpower). In fact I think I have this when I yawn – my left eye shuts involuntarily.

The doctors also told me – and I also saw through google sensei – that getting the anti viral medication in early is important. Basically, if you don’t start the miracle acyclovir within 72 hours you’re done for, and the earlier you start the better. I waited a day and then started the weaker old one, so I guess that made my experience worse than if I had scuttled straight down to the best hospital in town, begged my way in on the claim that I was having a stroke, and got myself on valacyclovir from the morning it started. I won’t make that mistake again! But it’s also possible the doctors wouldn’t have recognized the problem and would have sent me in for a series of pointless and expensive stroke checks, and started me late on the anti-virals. The anti-virals really are key.

Actually when I went to the doctor at my university hospital after the pain returned (and got the stronger acyclovir) he wanted to hospitalize me, and put me on a drip for the medicines. He confessed to me that he didn’t think I needed IV acyclovir especially, but he wanted to force me into a bed away from my work so that the stress would stop and my face would recover. He thought stress was the real problem here, driving the whole thing, and was worried the medicine wouldn’t work until I get my work under control. But the thing is I had just started a new job, and he wanted to hospitalize me on the day of my first lecture. It’s not a good look! And in truth I couldn’t stand to spend a week in bed with nothing to do, so I begged off of that. Maybe my recovery would have been better if I’d agreed to that.

So if you want a good recovery:

  • Get on the antivirals as soon as possible (and if your doctor offers bog-standard acyclovir tell him to go jump – go straight for the strong stuff)
  • Get the stress out of your life, including by hospitalization if necessary
  • Don’t start rehabilitation until the awfulness is settled down a bit
  • Do your gurning exercises ruthlessly, and keep an eye out for weird new facial behaviors

Then bingo, a year later you’ll be able to (mostly) get your face back.

And trust me: you don’t realize how important your face is until it falls off. Life without a face sucks!

The second bout and the prodrome

So this year I went on a series of business trips and had quite a bit of stress, and a week ago I could feel this bastard disease creeping in again. I could feel my face getting a bit tired, and when I took a selfie on Monday night last week I could see my smile had retrogressed. Bastards! I could also feel a twinge in the back of my jaw, and when I went to work on Wednesday I was getting confused about train doors and having strange emotions. So I went to the hospital again, explained the whole thing to an otolaryngologist and got the miracle valacyclovir into me before the disease was fully up and running. My face sagged a bit but I’m already doing rehabilitation a week later, because the virus never got started. This time I caught the stupid thing as it was sneaking in the door, and slammed it shut. This time also the doctors were worried it was something else and so put me through some tests: MRI and some blood tests. The MRI came up completely clean and pure, even confirmed I have a brain (who knew!), and after a long and exhausting conversation with the neurologist in which he refused to believe any of the symptoms I just exhaustively described here, I was free to get out and begin the rehabilitation. My next appointment to track facial progress is in two weeks.

This tells me two things about this disease. First of all, it tells me that stress is really bad once you’re at risk of this disease, and you need to keep it well under control. No one warned me that this little shit would come crawling around scratching at my door a second time, but it did. So if you have RHS, and there seems to be a good chance it was triggered by stress, then you need to get that stress out of your life. I would say this means doing whatever you have to do – change jobs, meditate, murder your boss (don’t get caught obviously), whatever it takes. My new job is relatively low stress and all the stress I experienced was from a cataclysmic series of tightly timed overseas trips, and I think I can control that easily by never again making such a series of business trips in such a short time. Compared to the stress that triggered the first bout of RHS what I’m going through now is trivial, and I didn’t even notice I was stressed until this disease hit. I guess I’m weaker than I used to be.

The second thing this tells me – and this is not medical science here – is that this disease has a prodrome. It has early symptoms that warn you it’s coming, and if you notice them you might be able to sense its presence. Looking back at my first experience of this neuropathic party, the neck pain and the slight tiredness in my face were there before the evil little bastard stuck the shank in behind my jaw, and had I known I might have been able to react more quickly[3]. Those same symptoms came this time around, so I went to the doctor early and started the valacyclovir before it could take hold. This theory makes sense to me because it is well known that other herpes viruses have a prodrome: Herpes 1 and 2 both have a kind of itchy weirdness in the area where the sores are going to arise, and if you hit the acyclovir then you may be able to prevent or lessen the resulting outbreak. So I guess chickenpox – which is a herpes virus – could have a similar course. I couldn’t find anything on this on the internet, but it’s my feeling that this is what happens.

A brief note on UHC

Japan has Universal Health Coverage. I don’t recall how much this disease set me back last year but this time the tests, drugs and bothering the hospital doctors without a referral cost me a total of about 30,000 yen, so it would have set me back 100,000 yen (about $US800) if I didn’t have insurance. I’m sure that it would cost a lot more in America’s weird-arsed system, since Japan has strict price controls, but I think it’s safe to say that 100,000 yen is tough for a lot of people to fork out, and the prospect of not being able to get treatment for this because you can’t afford it, and having to live your life with this intense, unbearable pain and the slow degradation of your face for what I can only assume would be weeks before the virus gave up and left – that’s awful. UHC is an absolutely fundamental part of a civilized society, and every political party should be 100% about getting it if you don’t have it, or protecting it if you do. Never let that wonderful part of modern social democracy slide away or be weakened by the vicious jackals who control our conservative parties. Or your face will fall off.

Preventing this disease

The best way to prevent this hairy bastard from coming and fucking your face through your ear is to get vaccinated against chickenpox. Sadly though the varicella vaccine is not in most countries’ mandatory schedules, so you won’t have received it even if you were born after 1984 unless you’re in one of the few that does cover it. Therefore, if you’re a parent in a country without this vaccine on the schedule, and you’re reading this, my advice is: pay the extra amount to get this vaccine for your kids. They will never thank you, partly because they’re ungrateful bastards but also because they’ll never know the fun they’re missing, but trust me it’s worth it. If you’re a policy-maker in a country that doesn’t have this vaccine on the schedule, hurry up and add it.

If you’re an adult who had chickenpox as a child then the first line of defense against this nasty thing is to avoid stress, make a life for yourself that has manageable stress and don’t let whatever stress you do experience last for too long. I went through years of intense stress before the first bout was triggered, but once it was there my next bout required a much lower threshold. So be careful with stress, and get control of your work as much as you can (I appreciate that this is useless advice for a lot of people, whose industry or career options are top-heavy with unpaid work, bullying superiors, and shitty conditions, but it’s the only advice that I have, sorry).

There is some evidence that the varicella vaccine, given to adults who had chickenpox, may reduce the risk of this disease. I’m thinking of getting it once this shit has died down, but it’s also possible that the same people whose low-paid high stress jobs put them at risk of RHS are also unable to afford the out-of-pocket costs for this vaccine. If you’re reading this I’m sorry, I’m out of options. Kill your boss, or find a way to move to a country with a better health system. Or vote Democrat and get that shit fixed[4].

Conclusion

The most important lesson for this is that you need to reduce the stress in your life to avoid this disease, and that as you get older the risk will increase so you need to purge that stress as you age. It might also help to get a vaccine against varicella even if you’re an adult who had chickenpox in childhood, just to get that extra bit of protection, but your doctor may not like that idea.

If you go to a doctor with the first symptoms of this and he/she offers you mere acyclovir, tell him/her you’ll pay the extra for valacyclovir. Wave this blog post at them, and explain the issue. What do they care?! Trust me you don’t want this thing hanging around, so push for it. Then take your rehabilitation seriously, and you may be able to get to a fully functional face once the shitshower passes on. Another thing I think I should have done but didn’t was demand a second course of valacyclovir, to really curbstomp this ugly fucker. Once those drugs are done though, you’re going to be looking at an unpleasant couple of months regardless, so good luck.

If you had other experiences of RHS, or want to rant about this nasty little hitchiker, or are having it now and need reassurance or have questions, put them in the comments. I’d love to hear how other people got through this virus, and I really hope that this blog post can help someone to deal with the horrors of this disease. You are going to get better and you will get your face back, I promise you!

fn1: I don’t know what kind of person designed human beings but requiring a muscle to activate to close your eye, rather than open it, is phenomenally stupid. You don’t realize how stupid that design flaw is until you can’t use that muscle, and suddenly you’re staring at everyone like a pscyhopathic cyclops.

fn2: I have this weird thing, that has existed since my teenage years, where I handle stress well but then when the stress disappears my body completely breaks. Used to happen with migraines, seems to happen with RHS. Others get sick during their stress but my response appears to be delayed.

fn3: I wouldn’t have, because I’d have thought it was Bell’s Palsy and just gone and bought an eyepatch.

fn4: I’m not American, but I’m aware that most people who read blogs like mine are, for some reason, and I have to remain aware of your society’s … shortcomings … when I write medical-related things.