Lauren Wells spent five days in a psychiatric ward before a family friend helped identify the potentially life-threatening brain illness she was suffering from—and the tumor on her ovary that was causing it.

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It was after midnight in June of 2020, and Lauren Wells was irritated with the upstairs neighbors in her apartment. She could hear their music and it was keeping her awake.

"I just laid in bed, and I could hear soft music in the distance," the 25-year-old nursing home administrator tells Health. "I got out of bed, and I went searching for it, and I couldn't find it. It was annoying."

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Credit: AdobeStock

The music continued almost every night, making it impossible for her to sleep. Lauren even began hearing it at the Sandusky, Ohio, nursing home where she'd recently started a new job.

"It was the same type of mysterious music that I couldn't make out, the same type of noise," she says. "I didn't know what it was, I didn't know where it came from."

But it wasn't just music. Lauren was experiencing other strange things, like peeing far more often than was normal. She was also having headaches and had developed a sharp pain in her left side that hurt when she went to the bathroom and prevented her from doing her daily run on the treadmill.

Even weirder was the odd, new sensation in her hands.

"Throughout the day, they would feel dirty. It would last a couple minutes, then go away. It almost felt like they should be sticky, but they weren't. I would sit in my office and just stare at my hands, wondering what was going on," she says.

She heard the cry of seagulls that didn't actually exist in the real world

Lauren searched for answers online. Not associating the music with her other symptoms, she looked up her frequent need to go to the bathroom and the strange sensation in her hands. From the results, she concluded she might have diabetes.

But the self-diagnosis didn't sit right, and she began talking to her friends and coworkers about what could be wrong. Nearly all of them chalked it up to a combination of stress and anxiety brought on by her job and a recent move to a new apartment.

With each passing day, however, her symptoms grew worse.

The sticky, dirty feeling in her hands spread into her mouth, then to her feet, making her so uncomfortable that she had to take off her shoes while at work.

"I was walking around my office barefoot like a crazy person trying to figure out what was wrong," she confesses.

Along with the music, she also began to hear the cry of seagulls outside her window.

"I very clearly heard seagulls squawking and I was like, this isn't right, there are no seagulls. I'm absolutely hearing things that aren't there."

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Credit: Courtesy of Lauren Wells

Alarmed, Lauren called her father, Brad, and told him she was going to the emergency room. Located seven hours away in Easton, Pennsylvania, he asked if he should come. She told him to hold off and drove herself to a nearby hospital.

After a cursory exam and normal blood test results, the doctor wrote a prescription for Ativan, an anti-anxiety medication, and sent her home.

"I texted my dad and said that 'everything's normal,' which means I'm just crazy," says Lauren, who followed up with a hospital caseworker and a social worker two days later. Both told her she was suffering from anxiety.

"I had gotten to the point where I thought I had something seriously wrong with me, but all the tests from the ER visit came up completely empty. There was nothing visibly wrong with me. It was more just that I felt totally wrong."

Her odd behavior prompted friends to intervene

Unable to sleep more than an hour or two at a time, Lauren grew agitated and began losing track of hours at a time.

Concerned for her wellbeing, her father called a friend to come stay with her.

"The night she stayed with me, she woke up in the middle of the night, and I was just sitting up in bed," Lauren says, "staring at her."

The next day, Lauren went to work. Scheduled to run a staff meeting at her facility, she found herself sitting at a table in a room of waiting nurses, only to realize that she'd left her laptop, purse, keys, and everything else she needed in her car, which she left unlocked in the parking lot.

"I just looked at everyone and I didn't say anything. I didn't know what to do."

Fortunately, the nurses did. They took her blood pressure, discovered that it was shockingly high and called an ambulance. Lauren, however, didn't want to go, insisting she was fine and that they could just take her home.

Instead, she was transported to the hospital and admitted to the emergency room. Once there, Lauren was nonchalant about her situation and excitedly texted friends, inviting them to come "hang out" with her at the hospital.

It was completely uncharacteristic, and her friends knew it. Worried, they communicated with each other, and then her father, who immediately began driving from Pennsylvania to Ohio.

A few hours later, with no conclusive test results, the hospital prepared to discharge her. Fearing she was suffering from schizophrenia, bipolar, or another psychological disorder, her concerned friends urged Lauren to admit herself to the hospital's psychiatric unit.

"I remember the nurse reading off the information about the psych hospital, me looking over at my friend, and her just nodding her head yes," Lauren recalls. "And I signed it."

Asked to surrender any weapons before being admitted, she turned over a multi-tool pocketknife that she kept in her purse in case of an emergency. It's the last thing she remembers-until waking up six weeks later.

'They were convinced that I was having manic episodes'

After arriving in Sandusky, her father had to wait for the negative results of Lauren's COVID-19 test before seeing his daughter. When he finally did, he was shocked at what he found. Lauren appeared to be having a full mental breakdown.

"I was on the floor trying to take my shirt off. I was throwing cake at people. I was doing some wild stuff. They were convinced that I was having manic episodes." Because of that, Lauren says she was treated with a variety of antipsychotic drugs, but none of them worked.

After five days in the psychiatric ward, her father's phone went off in the middle of the night. It was the calling with disturbing news, "Lauren had an event where she was rigid and not responsive," he tells Health.

After arriving at the hospital, he learned that Lauren was having seizures and had been transferred to the ICU.

Desperate for answers, he reached out to a family friend, a psychiatrist, and explained what was happening. The friend suggested he look into anti-NMDAR encephalitis, an extremely rare neurologic disease affecting only 1 in 1.5 million people annually. It's often caused by a teratoma (a tissue-filled tumor) found on the ovary-a very rare type of tumor, unlike the ones more commonly associated with ovarian cancer.

Within minutes of reading about the disease, Lauren's father knew he'd found what was wrong with his daughter.

But now her physical health was in grave danger

The community hospital where she was being treated had limited resources to manage her condition, so she was transferred to Cleveland Clinic and admitted to the Neurology ICU. But she was rapidly declining, and by the next morning, Lauren was intubated and on a ventilator.

An ultrasound confirmed she had a large teratoma on her left ovary, and in response, her body was attacking itself in an effort to remove it.

Anti-NMDAR encephalitis "is really your body creating antibodies against yourself," explained Pravin George, DO, a neuro intensive care specialist who treated Lauren at Cleveland Clinic. "Your body is recognizing that this tumor is not you, and what it tries to do is to attack the tumor."

However, the specific type of antibodies formed from a teratoma can end up targeting more than just the tumor. They can attack the brain.

"As soon as this ovarian teratoma started to get to a big enough size, that's when the immune system started to really ramp up," Dr. George tells Health. "Right around that same time [Lauren] may have started to have her first symptoms."

The symptoms would have been sporadic at first, but according to Dr. George, there was a tipping point leading Lauren to become "actively delusional" and suffer from seizures.

"Sometimes seizures are noticed very clearly," he says, "but sometimes it just looks like the patient is staring off."

Her tumor is removed, and then more bad news

By the time Lauren reached Cleveland Clinic, she was critically ill and placed in a medically induced coma. She began various treatments, including intravenous immunoglobulin (IVIg) infusion therapy, in which blood plasma-containing antibodies from thousands of healthy donors is given to help prevent further immune system damage.

The teratoma was surgically removed and sent for testing.

After several days, the doctors attempted to remove Lauren from the ventilator, but she was unable to manage on her own and remained unresponsive. She was given a tracheotomy and feeding tube.

Despite the severe immune reaction that can accompany a teratoma, the tumors are typically benign. But when the results came back, the news wasn't good; Lauren's was malignant.

"Teratomas are rare, and NMDA's are rare," says Lauren. "But a malignant teratoma is even more rare."

The doctors wanted to begin chemotherapy, but first she had to radically improve before her body could endure it. Over time, the treatments began to work, and Lauren started the slow process of recovery.

"All they wanted her to do was be able to follow a command, like squeeze your hand, wiggle your toes, and have some awareness," says her father.

She worked daily with a physical therapist to be able to sit up, stand, then walk with a walker. Her memory began to come back, and she began to recall everyday things like who was president and how to play a simple game of cards.

Rehab, recovery, and reckoning with the aftermath of her mental and physical trauma

After nearly three weeks, Lauren was moved from the ICU to oncology where she began chemotherapy before eventually transitioning to a rehabilitation facility. According to Lauren, it was both strange and comforting to be staying in a place similar to the one she had worked as an administrator just weeks before.

"I felt like this was so familiar: therapists, aids and a rehab gym," she said.

Though it took months, the surgery and chemotherapy were successful and now, after a year of treatment and recovery, Lauren is cancer-free. But not completely out of the woods.

According to Dr. George, in the first two years after suffering from anti-NMDAR encephalitis, there's anywhere from a 10 to 25% rate of relapse. Because of that, Lauren says that she needs to be vigilant about her health and watch for any signs of returning symptoms.

"One of my first symptoms was frequent urination, so if I pee an extra time or two during the day, I think to myself, 'Is this an NMDA or did I just drink some extra water?' When I hear music from an overhead system, I pray that everyone else in the room can hear it too. I've never had to be paranoid about my health before, so that is a great change."

There are other changes, too. As a result of the encephalitis and intubation, Lauren's vocal cords were damaged, requiring surgery to help repair them. And while her speaking ability has improved, her voice isn't the same, which makes it difficult for people to hear her, as well as prompting some people to ask, "Did you lose your voice?" or "Is that your real voice?"

"As a person who was always considered to be bold, outgoing, and the loudest person in the room, in a good way I think, these questions and instances, when people can't hear me are reminders of this change and its impending permanency," Lauren says.

Along with her voice, Lauren also lost her hair, which she said has been a struggle. "I didn't have the mental strength to do what needed to be done, so I let it fall out on its own, day by day, for months. I'm adjusting to my new look, but especially as a woman, having your hair look the way you want it to, is a huge part of feeling beautiful."

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Credit: Courtesy of Lauren Wells

My body 'suffered an exceptional trauma and didn't give in'

Despite the difficult changes, Lauren says she's learned just how strong her body is and that it's a body that fought to recover from a disease so severe, an ICU staff member commented they'd never seen a lower heart rate on a person still living.

"It's so easy to not love your body-to want a flatter stomach, clearer skin, bigger boobs, or a smaller nose, but I know that as imperfect as I am, and as imperfect as I may think my body is, that it's the same body that suffered an exceptional trauma and didn't give in." 

And, little by little, her life is returning to normal.  Lauren's back to work at a new job acting as admissions and marketing director for a skilled nursing facility in Cleveland and settling into a new house.

Lauren says that her illness helped her realize just how amazing the people in her life are. From cards and packages to prayers and a friend who donated their plasma, "I had and still have an amazing group of people supporting me through everything." That includes her father, who Lauren says could "base the book on patient advocacy on my dad and everything he did for me while I was hospitalized."

As for her perspective on everything she's been through, Lauren says that she's working to come to terms with the experience that has forever changed her life.

"I still can't think too hard about my hair, I still get sad when my friends bring up the memories from events I couldn't attend because of my illness, I still ask myself, 'Why me?' But I have to remember that my life was so valuable that countless people worked extremely hard to keep me alive," she says. "I have to understand that the value of my life didn't decrease because of what happened, but my experience has enhanced my story."

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