Herpes, or HSV-1, is a common virus. Most people know of it as the virus that causes cold sores. What many of us don’t know is that there is a rare instance that this virus, for reasons unknown to doctors, can travel to the brain. If this happens, the risk of permanent damage and death is extremely high. This is what this mom and high school teacher discovered in 2015. Lucky for her, she lived to tell the tale.
Woman Nearly Dies After Herpes Virus Infects Her Brain
Brigid Ward is a single mom of two and a high school teacher. She says that she has had two cold sores in her lifetime, one while she was in high school and the other in university. Beyond that, she hadn’t had much experience with the virus. In October 2015, she recalled that she had been feeling a bit off. Finally on October 28th, she left work early thinking she had the flu, not to return for 15 months.
“I had been feeling off for a while, but I chalked it up to seasonal allergies, run-of-the-mill headaches, and exhaustion from work and being a mom,” she explained. “The doctors I saw had a way to explain each lingering symptom, but by that day my head wasn’t just aching ― it was burning. I could barely move or open my eyes. I felt lightheaded and weak. I became nauseated by the slightest smell.” (1)
She went home and went straight to bed, where she spent the next few hours sleeping. She asked her mom to go pick up her kids from school because she was unable to drive. Brigid continued to sleep until screaming voices jolted her awake – only there was no one there.
“It was my aunt and grandmother, both of whom are deceased. It sounded like they were in the room, shouting. It was an experience that words can’t describe.”
She then began seeing things like bats flying around her room. Terrified, Brigid thought that she was dying. She never lost consciousness, but she was weak, dizzy, and extremely nauseous. Finally she called her boyfriend at the time to ask him to come and take her into urgent care.
Tests Confirmed The Unbelievable
A few hours later, the doctors confirmed that she had some kind of mass on her brain. She was quickly transferred to the Hospital at the University of Pennsylvania. Her brain was swelling and she was just hours from falling into a coma. The doctors put her on antivirals thinking that she had some kind of brain infection. Finally, the doctor’s hunch of a virus in her brain proved to be correct: She had herpes simplex virus encephalitis.This refers to when the herpes virus travels to and infects the brain.
Herpes Simplex Encephalitis
Herpes Simplex Encephalitis is a rare neurological disorder classified by inflammation in the brain. It occurs when the herpes simplex virus travels to the brain. Common symptoms include (2):
- General weakness
It is extremely rare, and when it does happen it usually occurs in babies or the elderly. It has nothing to do with how healthy you are or your lifestyle. Truthfully, doctors don’t yet know exactly what triggers the body to direct the virus to the brain.
The first treatment used for herpes simplex encephalitis is a drug called acyclovir. If you don’t receive it within the first few days of the virus entering the brain, permanent brain damage, blindness, coma, and death are almost certain. Next steps include antibiotics, steroids, and medications for pain and nausea. In the beginning, while in the hospital, Brigid also received infusions to keep her hydrated. The doctors also used antiseizure medications to help control the “auras” she was experiencing. These are referring to the voices she was hearing and the visions she was having.
For weeks after, she required a nurse to visit her at home to administer the necessary medications. It took many weeks for her to be able to handle light, smells, and much more than small shots of gatorade. She also found over the months of her recovery, she had good and bad days. Sometimes she could stay awake all day and socialize. On other days she was puking and bedridden. Brain fog, word processing, and chronic fatigue are also things that she had to deal with throughout her recovery.
While she has recovered and returned to work, she still has bad days sometimes. Mostly, some days she struggles with incredible fatigue. She says brain fog is still problematic and that her memory has suffered considerably. Brigid says she has overcome this by writing lists, setting alarms, and keeping calendars. The illness has also made her more empathetic to her students with conditions such as ADD and ADHD.
Her takeaways? Don’t stress over what you can’t change and enjoy every moment you have with the people you care about. We can get so caught up in our day-to-day, but everything could change and unravel instantly.
“Today, I cherish moments with my kiddos more than ever before. Little things, like curling my daughter’s hair, mean so much more because I’m still here for them,” she says. “Playing catch with my son can be the best part of my day, because I am lucky that he still asks me to do it. Every little thing ― whether it’s singing in the car or jumping over waves ― means more to me now. I take more pictures. I am way more protective and mindful of my precious time and energy. When I have bad days, I cry or pray or take deep breaths and keep going. I shut my eyes when I snuggle and take it all in because my brain needs that. I am more generous with my smiles.”
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- “I Thought I Had A Headache. It Turned Out To Be Herpes (HSV-1) — In My Brain.” Huffpost. Brigid Ward. February 17, 2023.
- “Encephalitis, Herpes Simplex.” Rare Disease. 1987, 1989, 1990, 1991, 2001, 2009.