Blithe Rocher

Not your average engineering manager.

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Ramsay Hunt Syndrome

It started with a little tingle in my throat on Thursday night as I drank a glass of orange juice with dinner.

On Saturday my ear started to hurt a little. Scott asked "do you have an ear infection?" and I said "what kind of adult gets an ear infection?!" I wouldn't know. I've never had an ear infection before.

On Sunday night we had the bougiest, most delicious sloppy Joes at our house with friends.

On Monday night I sat in the ER with half my face paralyzed.

When you're pregnant and half of your face stops working, they suggest you go to the ER immediately. It felt like the most non-emergency emergency. In the Lyft on the way to the hospital someone tried to make a u-turn right in front of our car. The anti-lock breaks and some defensive maneuvering saved us some pain and some paint.

The ER triage team wasn't quite sure what to do with me. The function in my face was still intermittent so I couldn't prove to them that it wasn't working. I showed them a video on my phone. I'm sure to them I seemed fine, but it's probably not good for your job if you let someone have a stroke in your waiting room.

Once admitted, the facial paralysis stuck around long enough for the doctors to see. They asked if I had ever had Bell's Palsy before. I had not. They listened to my symptoms and looked in my ear. They said "it's probably viral," gave me a prescription for antibiotics, and discharged me. They didn't give me anything for the pain. Pregnant women don't get to use much more than Tylenol. They aren't really into testing prescription pain killers on pregnant women these days. I took my Tylenol and the first course of antibiotics and tried to sleep.

The next two days were agony. I can only imagine what it's like to be truly addicted to a drug but this may be the closest I have come to being a Tylenol addict: the sweet, sweet relief I felt 30 minutes after taking the label-suggested dose, the feening I felt 2 hours before I could take the next one. I started to shiver while trying to sleep one of the nights. Each time I shivered I could feel the pain radiate from my ear up and around my skull like lightning burning down the branches of a tree. It took two days for me to start to lose the will to stick to the scheduled dosage so I scheduled another appointment with the doctor. I had lost about 10 pounds. The third trimester of a pregnancy isn't a great time for a diet.

The receptionist at the doctor's office was nice and made lots of jokes as she checked me in for the appointment. She avoided mentioning that half my face didn't work. I tried to avoid smiling. I tried to avoid falling over from pain and weakness. I should go back and tell her how funny and nice she was and that I wasn't exactly myself that day.

My primary care physician didn't take long to diagnose me with Ramsay Hunt syndrome. She said I could stop taking the antibiotics. She had to check with my OBGYN for approval to give me the tiniest dose of steroids for the swelling. She told me to tape my weak eye shut at night. She told me it might take weeks for my face to get better. As I walked out of the doctor's office, someone in the waiting room said to me "you're supposed to smile when you come out of there." People are always telling women to smile.

Ramsay Hunt syndrome is caused by the same virus that causes chickenpox. The virus just waits around dormant in your body for you to be a little too weak or a little too stressed and reactivates. Then half of your face stops working.

After about two days on the new prescriptions I felt better enough to stop taking the Tylenol. I went back to work (from home). My coworkers were nice enough to let me leave my video off on conference calls. It was difficult to talk, and eat, and drink.

Three weeks after the first symptom, most of the infection was gone but the nerve damage remained. My face still felt like it had been punched recently. The smallest sensations like a tear rolling down my cheek, a gentle brush of my son's hair across my cheek, or even just the breath from my nose would cause me to wince.

The feelings of itchiness and pain share some of the same pathways in your body. At night when I would lay on the weak side of my face the pain would cause my ear and scalp to itch. It's weird when only half of your head itches. When you know you're not supposed to scratch something you try to just touch the spot a little and maybe that will be enough to make it feel better. It's not. It sets off a spiral of pain and itch and you just lay there awake and frustrated. Antihistamines don't work for this kind of itch.

I went back for an appointment with a specialist. She set much lower expectations. The nerves and the function in my face might take a year to recover. It might not ever recover. She said trying to force it might make things worse. She can't give me anything for the pain because of the baby.

For now I'm just waiting. Either the nerves will heal in time or they won't.