Weeknote 24: Ramsay Hunt Syndrome

I’ve always found it easier to process difficult things by writing, and I have a lot to process at the moment.

So this is a weeknote to cover what has been, undoubtedly, one of the hardest weeks of my life. It’s not work-related, so if you’re here for design systems or content design, come back another day soon :)

A warning up front, if you’re someone that suffers with health anxiety, you may want to give this one a miss.

My symptoms

2 weeks ago, I started getting neck and head pain. It was a strange pain. One that oscillated between feeling like muscle tension, then ear pain, then eye pain, and my skin felt bruised and burnt. I was feeling strangely emotional and overwhelmed by work. I kept waking at 5am feeling stressed and strange, and with a sore, stiff neck that demanded stretching and painkillers. It was first diagnosed as a tension headache. The doctor I spoke to told me some of my symptoms sounded a bit like shingles, but since I didn’t have a rash, he concluded it probably wasn’t that.

On Thursday the rash came. I called back on Friday and was prescribed a course of antiviral medication. It was our 4 year wedding anniversary. I felt stressed and not all that well, but with so few things to look forward to in lockdown, I soldiered on through the steak dinner and cocktails we’d planned.

On Saturday morning I was on the phone to my Dad, and I started to notice that mouth felt funny. Anytime I said a word with an “M” in it, my nose felt like it was pulling to the right. I came down in a panic and told James, who couldn’t notice anything and reassured me that I was probably imagining it. After many years of watching me navigate my health anxiety, he’s used to me having these fears and then watching them fade away again, uneventfully.

I made a video appointment with a doctor, and apologised up front for wasting her time. I explained my symptoms and she asked me to make some faces at her. I could already hear the “I think you’re fine, it’s just a symptom of the shingles, call back if anything changes.” But she didn’t say that.

Instead, she paused, and slowly said “Amy. I can see that your face is pulling to the right. I want to stress that it’s incredibly unlikely that you are having a stroke, but I need you to call an ambulance now, or drive to A&E, and get this checked out”.

At that moment, it felt like I went blind and deaf for a minute. I ran downstairs and asked her to tell James what she’d told me. Shaking, I called an ambulance, and the paramedics arrived within 20 minutes. They were fully masked and gloved, but they were amazing. They calmed me down enough to get some reliable readings, and after what felt like an endless series of tests, confirmed that they didn’t think I was having a stroke. They thought it could be the virus causing my facial paralysis, or it could be a reaction to the antiviral drugs I was taking. That left me with the difficult choice to continue with my antiviral drugs and stay on high alert for anaphylaxis, or stop taking them and risk the virus worsening my symptoms.

And so I went to hospital—alone, apart from the paramedics—to have that confirmed. The doctors at the hospital ran the same tests on me as the paramedics did. A masked doctor told me to puff my cheeks out, which I couldn’t do. He asked me to raise my eyebrows, which I couldn’t do. I cried my eyes out while one side of my face stayed stubbornly still, and a nurse in a mask brought me a cup of tea.

By the time James picked me up 4 hours later, I couldn’t move the left side of my face, and I haven't been able to since.

The diagnosis

Once the hospital confirmed I wasn’t having a stroke, I felt like I was in a strange no man’s land. As relieved as I was not to be dying, I had no idea what was happening to me. I called my cousin (a doctor), and my GP, and they converged on a diagnosis: Ramsay Hunt Syndrome.

Ramsay Hunt Syndrome is an exceptionally rare condition (about 2 in a million is the most commonly-cited figure I can find). It’s caused by the Varicella Zoster virus—the same virus that causes Chickenpox and resurges shingles. The virus attacks the facial nerve, leading to a range of symptoms including nerve pain, facial palsy (paralysis), loss of taste and smell, hearing loss and balance and coordination problems. So far I’ve been lucky enough to escape the hearing loss, but have had the other symptoms to varying degrees.

Because Ramsay Hunt is so rare, it’s difficult to get a consensus about the recovery rates. I spoke with a specialist facial palsy clinic earlier this week, who told me there’s about a 50% chance of a full recovery. This will happen if there’s been no permanent nerve damage, and in that case, I should see some small signs of improvement somewhere around the 3 or 4 week mark.

If there has been permanent nerve damage, I won’t be quite so lucky. How lucky or unlucky remains to be seen. My facial nerve will need to regrow, which will take around 5 months, and there’s no knowing yet where I’ll be left by the end of it.

One thing I have been assured of is that I’ll be better than I am now. I cried with relief when they told me that.

The worst bits

My house is full of medication, supplements, compresses and creams. Everywhere I look there are little reminders that I’m sick.

My eye won’t close by itself, so my vision is always blurry. I have to put eye drops in every 2-3 hours and tape it shut at night to avoid infection. I bought some microporous tape, which aggravated my skin immediately, and has left it too painful for me to wear an eye patch. The facial palsy clinic is sending me some skin-friendlier tape in the post, but it hasn’t arrived yet. I’m using sticking plasters in the meantime. If I have to get up to take painkillers or go to the toilet in the night, I have to carefully untape it, put drops in, and retape it before I can go back to sleep. I’ve been told that if my eye starts to look red, I have to go straight to A&E. I’m constantly checking it.

I can’t eat anything too crunchy, or too liquidy. Mashed potato, pasta and soft toast are 90% of my diet. Eating has gone from being a source of pleasure and comfort, to a tedious, mechanical thing to be done. I can drink only in small sips, and there’s a definite knack to it. Straws don’t help, since I can’t put my lips together. For the first few days I didn’t want James to see me eat or drink, and would eat alone to avoid it, despite his protestations.

Talking is tiring, and anything more than a 20 minute conversation leaves me feeling sore, frustrated and clumsy.

The anxiety has been extraordinary. I’m told that resting and reducing stress is critical, and yet for the first few days, I was having 7 or 8 panic attacks a day. I’ve been prescribed beta blockers and diazepam to bring that down, which have been doing the trick. They’re making me tired, but it’s a trade-off worth making for now.

I’m now in the high risk category for Coronavirus. My immune system has taken an absolute pasting, and it’s not equipped to deal with an aggressive virus at the moment.

The good bits

The panic I felt initially has settled a bit now, and I am finding the odd moment of relaxation and rest.

And as well as all the medical paraphernalia, my house is also full of flowers. Everywhere I look there are reminders of love. Whether it’s the get well card from my team at work, the many flowers from friends and family, the stack of magazines from my sister, the daily messages and calls from my parents, or the unprompted foot massages and hugs from James, this has certainly shown me the strength of my support network.

I’m now sleeping until about 6am uninterrupted which I haven’t been able to do since the pain started.

I’m learning that I have more patience and strength than I knew. I’m discovering how to tune into and respect my constantly-changing limits, and I’m learning to hold some energy in reserve on the good days, and to approach the bad days with self-compassion.

On Saturday, about 3pm, I managed to move the left corner of my mouth about a millimetre. It’s a tiny movement, so small you wouldn’t notice if you weren’t looking, and I’m too scared to hope for too much, but I caught it on camera and I’ve been able to keep doing it.

I’ve also been learning lots about how you should (and shouldn’t) design content for people in the middle of a personal health crisis. I might do something with that, soon.

What’s next?

I’ve made the difficult decision to end my contract with Babylon, to concentrate on resting and recovering properly. The announcement brought a wave of lovely messages from my team, who I’ve grown pretty fond of in the short time we’ve worked together.

On the whole, I’m trying to take each day as it comes, and not to think too far ahead. However, I’d love to think that some good could come out of this situation, down the line. If I can raise awareness of this condition, or if sharing my experience helps to bring someone comfort in the future, I’d be pretty happy with that.

I might continue to write weeknotes about this, or I might not. But writing, sharing my experiences and connecting with people is what comes naturally to me, so I wanted to put something out there to explain what’s been happening and where I’ve been.

If you made it this far, well done. If you’re one of the people who’s reached out to me already, to send well wishes, or to make adjustments, please know that it’s meant a lot and has made a huge difference to me.

Thank you for reading, and I hope we’ll speak again soon.