“I Had Shingles—This Is What It Feels Like”
One woman describes her terrifying and painful journey with a severe case of the shingles virus.by Beth Shapouri Health Writer
Before February of 2018, Christina Herman was aware that getting shingles was a possibility for anyone who had chickenpox like she did as a child, but she hadn’t given it much thought—she was young and healthy and she thought it mostly affected older people (it does, by the way). Plus, as a 28-year-old new mom to her son, Griffin, she had other things to focus on. But that changed with a sudden pain in her neck a week after his birth.
At first, Herman assumed the constant ache on her right side was due to the way she leaned her head down while she was breastfeeding. After all, the first-time mother didn’t have anything to compare it to, so she thought that it was likely just adjustment pains. But then in the following days the discomfort intensified and moved to her ear, which was swollen and covered in what looked like a rash. Seeking answers, she went to a nearby urgent care center where a doctor diagnosed her with an ear infection and sent her home with antibiotics. Assuming that accounted for all her symptoms—she thought her ear was just inflamed due to the infection—she went home believing she was just days away from relief.
Unfortunately, that wasn’t the case. In the following days, things took a sudden and terrifying turn for the worse. The sensation up the right half of her head intensified from painful to excruciating. “It was like a stabbing pain inside of my brain,” says Herman. “It was the most painful thing I've ever experienced. I’d just been through natural childbirth, and I would do that again any time over what I was feeling then.” And then, when she sat down to eat a bowl of oatmeal, she was surprised that her mouth didn’t seem to work: “I went to look in the mirror and half of my face was paralyzed.”
Scared and confused, she left her son and her husband, Steven, at home while a family member drove her back to urgent care yet again. After first suggesting she had had a stroke—a terrifying thought—the doctor took a closer look at her chart and gave the correct diagnosis: Herman had shingles (herpes zoster), a notoriously painful condition, which, according to the Mayo Clinic, is caused by a reactivation of the chickenpox virus that travels along nerve pathways to your skin.
Herman isn’t the typical shingles patient—most cases strike after the age of 50, with the risk increasing over the years from there. However, it has been known to happen in younger people, specifically with those with taxed immune systems, which Herman believes her to have been at the time thanks to her pregnancy, the stress of childbirth, the lack of sleep that comes with having a newborn, and just plain bad luck. She and her care team believe it was the perfect storm to trigger the onset.
But what’s worse, the doctor determined she had a particular case called Ramsay Hunt Syndrome in which the facial nerve is paralyzed. It’s considered both severe and rare—according to the National Organization for Rare Disorders, it impacts only 5 in 100,000 people in the U.S. per year. That explained the pain in her neck and ear. While the most common location for the rash that usually accompanies shingles is the trunk, according to the National Institute of Neurological Disorders and Stroke, in Ramsay Hunt Syndrome, it typically impacts the ear, mouth, face, neck, and scalp. Symptoms may include hearing loss, vertigo and tinnitus. Vertigo is a specific type of dizziness often associated with loss of balance or coordination and Tinnitus is a buzzing or ringing that occurs in the ears. Left untreated, it can leave behind permanent complications including hearing loss and lingering facial paralysis, so Herman knew it was important to act right away.
Facing the Challenges
The new mom was in a particularly tough situation: She couldn’t risk the health of her two-week-old child. According to a 2019 research review in BMJ Pedicatrics Open, chickenpox is fatal for 30% of babies who contract it in the first month of life. “I couldn't touch my son for a week, I couldn’t breastfeed.” The psychological impact was brutal, as she explains, “It was scary—really hard emotionally and mentally.”
She was immediately prescribed anti-viral medication and heavy painkillers to help get her through until the outbreak cleared. But her other symptoms kept her from finding any peace. “I had ringing in my ears. I had vertigo. I couldn't take a shower or use the bathroom by myself—my husband had to hold my hand and walk me to the restroom,” she explains.
But some things were looking up. Right away her lesions started drying and the agony began to ease. And after seven days she got her first piece of good news: Her rash had fully scabbed over, meaning it had moved past the contagious blister phase, and she was in the clear to hold her son again.
However, some of her symptoms were slower to respond, and her doctors warned her that they could linger for a long time, which isn’t uncommon for Ramsay Hunt Syndrome patients. For Herman, “The facial paralysis and the dizziness were the last symptoms to go away—it took about two months to feel more normal.” And even then, she insists, she had glimpses of after effects. Says the marketer and social media consultant, “For a while after I was cleared to go back to work, I had trouble parking my car straight in the lines. My balance was still off!”
But, little by little, things returned to normal. And to her pleasant surprise, the only evidence left that the episode took place is that her right eye now squints a bit more when she smiles—a tick leftover from the muscles having to work harder to close when her facial nerve was blocked. A self-proclaimed, “big smiler,” it bothered her at first, but now she says, “You have to look for it [to see it].”
Looking Back While Moving Ahead
What Herman wishes she knew with her first pregnancy she took into her second—when she gave birth to her 8-month-old daughter Emilia, she made sure to take it easy. “This time I got enough rest. I got enough of the right food, nutrients, and vitamins. I did a lot of massage—everything I could do, I did.” And it worked—she successfully side-stepped a reoccurrence.
Down the road, she “definitely” plans on getting the shingles vaccine when she turns 50, the age at which it’s FDA-approved for use. In the meantime, she is focused on the basics of keeping her immune system running smoothing: keeping stress levels low, prioritizing sleep, and not pushing herself when she’s tired.
For anyone dealing with shingles, she recommends seeking out others who have been through it for support. “At the time, I couldn't find any information about what recovery would look like or even what the prognosis was. It was sort of like going to this dark tunnel by yourself and not knowing what was going to happen or what the outcome would be. It would have helped to know it could be OK. I now know there is hope–even if it doesn’t always feel that way when you’re in it.”
Chickenpox Fatality in Newborns: BMJ Paediatrics Open (2019) “Management of Varicella in Neonates and Infants.” bmjpaedsopen.bmj.com/content/3/1/e000433