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What is Bell's palsy? Women share what it's like to have a facial paralysis

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Elena Sheppard was diagnosed with Bell’s palsy, also known as idiopathic facial palsy, in the last week of her pregnancy. (Courtesy of Elena Sheppard via Instagram)

One morning last June, writer Elena Sheppard woke up and thought to Yahoo Life, “I have a weird feeling on my face.” “My lip looks swollen to me.”

It reminded her of how some women have swollen lips while pregnant, and after all, Sheppard was in her last week of pregnancy with the twins. But after about four or five hours she lost the ability to move part of her face. “It was basically a sudden collapse of the right side of my face,” which she said was “extremely painful.”

The 35-year-old Brooklyn resident adds: “I thought I had a stroke.” So is her husband. Sheppard called her obstetrician and said “very quickly it sounded like Bell’s palsy” – a condition also known as idiopathic facial palsy that affects about 40,000 people in the United States each year.

What causes Bell’s palsy?

D., assistant professor of otolaryngology at Johns Hopkins Medicine and specialist in Bell’s palsy. Jason Nellis tells Yahoo Life that the sudden condition occurs when the facial nerve that runs along the inner ear becomes inflamed and puts pressure on it. resulting in nerve and facial paralysis.

Although the exact cause is unclear, viruses such as herpes zoster (causing chickenpox and shingles) and herpes simplex (causing herpes and genital herpes) may play a role. Nellis explains that these viruses can lie dormant and then be triggered in some way. “No one really knows,” she says. Nellis notes that Bell’s palsy is also more common in pregnant women, although the cause is not fully understood.

Sheppard says it was “reassuring” to get the diagnosis, but because Bell’s stroke symptoms can be similar to stroke symptoms, she had to go to a triage center for an MRI, which ruled her out. He was then given the typical treatment for Bell’s palsy – steroids and an antiviral drug. “One of the keys is early detection and early treatment,” Nellis says. “If you can get treatment within three days of starting, that has a better chance of a meaningful recovery.”

Fighting facial paralysis

But despite the medication, Sheppard initially struggled with eating and drinking. “Drinking water—it drips out of your mouth,” he says. “I bite my tongue and cheeks a lot while eating. As if everything was in the wrong place.”

But the biggest challenge was dealing with his right eye, which was still not fully closed. “My eyes have been open since June,” she says, sharing simple things like taking a shower and washing your face, which are difficult and uncomfortable when your eyes aren’t fully closed. With Bell’s palsy, “Or when it’s windy outside, your eyes squint to protect yourself, but you don’t see.”

“This doesn’t feel normal,” says Sheppard, who uses eye drops during the day and ointment to keep the eye moist at night.

Beyond the physical struggles, Sheppard grappled with the fact that she couldn’t smile in any of the photos with her newborn babies. However, she says being a new mom also helped Bell deal with her stroke. “Weirdly right now that’s kind of a blessing – I’m too busy with other things,” she says. “I think if I didn’t have two people to keep alive right now, I’d be totally obsessed with it and screwed up. But I think about it because I’m very busy, but it’s not busy.”

However, when she has time to think about it, she shares, “it really upsets me.” Sheppard says she’s in “this bubble” at home, but when she leaves home to meet friends or run errands, “I see people looking at me and she’s like, ‘That’s right, that’s not my face.'”

Sheppard describes herself as “a person who usually laughs a lot,” so “trying to figure out how to convey this without my face was weird. I just can’t smile.”

Holley Grainger tries to smile with facial paralysis.

Holley Grainger says her experience with Bell’s stroke in 2014 was “painful” and “extremely frightening.” (Courtesy of Holley Grainger)

Like Sheppard, registered dietitian Holley Grainger experienced Bell’s palsy during her pregnancy. During the final six weeks of her second pregnancy in 2014, the Alabama resident was struck with “enormous headaches” on the right side of her skull.

“Six days after giving birth to my daughter, I went to whistle for dogs and noticed that the right side of my lips didn’t pucker to make a whistling sound,” Grainger told Yahoo Life. “My eye also collapsed and I had a severe pain on my right side where my cheekbone and ear met. All day long my face tingled, my eye twitched and I had a headache.”

Less than an hour after her symptoms began, “The entire right side of my face was motionless and I had intense ringing in my ear.” Just like Sheppard, Grainger thought he had a stroke. “We rushed to the emergency room for tests and I was told that Bell had palsy,” she says, sharing that the whole experience was “extremely frightening.”

The earache and pain in the cheekbone, where the facial nerve is located, was “unbearable,” says Grainger. “I had terrible headaches and my eyes were extremely dry because I couldn’t blink.”

He was given “high doses” of steroids and antivirals and was told to “protect my eye by using thick eye drops and covering it with tape at night”. Along with the pain, Grainger also had to come to terms with the way his face looked different from what he was used to. “I felt extremely guilty mentally for feeling empty every time I looked in the mirror,” she says.

Anne Holley Grainger with her husband, two children and a French bulldog.

Pictured with her husband, children, and dog, Grainger encourages anyone with Bell’s stroke to find a specialist and support system. (Courtesy of Holley Grainger)

dealing with the unknown

But both Grainger and Sheppard say the “unknown” is and is one of the hardest parts of having Bell’s palsy, not knowing how long the symptoms will last.

Nellis admits that “the hard part is the waiting.” She emphasizes that early treatment is essential for meaningful recovery, she says. “As soon as you find out you have facial weakness, see a doctor and take high-dose steroids and get good treatment as soon as possible,” she says. “If you want to have the best chance of recovery, getting treatment early will give you your best bet.”

Grainger eventually recovered, and he said only “very few side effects” remained that he had noticed. Bell’s advice to anyone with a stroke? Find a specialist right away – even if you have to travel to see them – “to make sure you’re taking the medication in the right dose, as these are crucial for the first few days.”

It also says find a support system. “Over the past seven years, I’ve emailed more than 1,000 people, called me, and commented on their questions about Bell’s stroke,” Grainger says. “However, the main comment I get is how lonely and frustrating it can be. Bell’s palsy not only makes you look different – which for many is devastating – it’s also extremely painful and frustrating.

Nellis acknowledges that seeking support is “really important,” citing her own research showing that people with Bell’s palsy have “higher rates of depression and anxiety and lower quality of life.” This is partly because people with the condition can be socially isolated. “They’re less likely to go out for dinner because they drool,” he says. “Most are learning how to cope with a new normal. … It’s really hard.”

As for Sheppard, her facial paralysis has started to improve but she is still experiencing symptoms. He says he learned to buy things one day at a time. “I have to take it every day because there really is no other choice,” she says.

Sheppard shares that she is “very worried” that she can’t smile in pictures taken with her babies. “But I’m happy for the moments I have now,” she says. “It’s not the picture I imagined, it’s pictures of what actually happened, and that’s just as important.”

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