I Thought I Had A Headache. It Turned Out To Be Herpes (HSV-1) — In My Brain.
By Brigid Ward,2023-02-17
The author during her stay at the Hospital of the University of Pennsylvania, where she was treated for encephalitis in 2015. "I do not remember this day," she writes.
On Oct. 28, 2015, I left my high school teaching job early because I thought I had the flu. 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. 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. I had still made my way into my second home, my high school classroom, hoping that if I pretended to be OK, I would be.
It didn’t work. At the school nurse’s office, I learned I had a fever and decided I needed to go home. I kept my head down to avoid the bright lights and stale smells in the hallway, and my teaching friends walked me out. I didn’t return for 15 months.
My ex-husband had my kids that day, so I immediately crawled to my bed when I got home. I drifted in and out of sleep, occasionally waking for sips of water or to use the bathroom. My fever continued to climb, and so did my lethargy.
I spent the next day in bed. I eventually remembered that my children needed to be picked up from school.
“I just need help getting the kids,” I told my mom. “Please do the pickup for me.”
“OK, I am telling your dad, too,” she replied. “I’m worried. Promise to get to a doctor. You need to get checked out.”
Hours later, I heard voices in my ear so loud that they jolted me awake. 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.
Then I saw black bats in the corner of my bedroom, flying around as the afternoon sunlight filtered through my curtains. “What the hell is happening?” I wondered. Was I dying? Was I losing my mind? Was this how that happened?
For the next several hours, I experienced waves of dizziness that terrified me. I never lost consciousness; it was just a constant warm and tingly weakness.
I was fading and knew I needed help. I remember thinking, “How can I explain this without sounding crazy?” I called my then boyfriend and calmly told him that I needed to go to urgent care. He drove me to the closest hospital. I stumbled into the emergency room, puked, collapsed into a chair and waited to be seen. When I finally talked to a doctor, he asked if I might be pregnant or if I could have been exposed to Lyme disease.
I had a CT scan, and after waiting hours for the results, the doctor said I had an apparent mass on my brain and needed further testing. My sister, who is a nurse, made some calls, and soon after I was in an ambulance headed to the intensive care unit at the Hospital of the University of Pennsylvania. The doctors there believed I had a brain infection, so they treated me with antivirals. My brain was quickly inflaming, and I was hours away from slipping into a coma.The author and her two children the day after she was discharged from the hospital in 2015. "I was very sick and scared, but relieved to be back together," she writes.
After several lumbar punctures and more scans, I was diagnosed with herpes simplex virus encephalitis . Worldwide, 3.7 billion people under the age of 50 have herpes simplex virus type 1 (HSV-1), which is commonly known for causing cold sores, usually around the mouth and nose. But there are a few people ― about 1 in 250,000 to 500,000 per year ― in whom the virus travels to and infects the brain. Scientists aren’t exactly sure how or why this happens, but when it does, it can cause long-term symptoms, permanent neurological damage or even death.
I can remember having two cold sore outbreaks in my life. The first was at my grandfather’s funeral when I was 16. The second time, I was a freshman in college and fighting a bad case of bronchitis. I awoke one morning mortified to discover a cold sore that seemed to cover my entire mouth. I didn’t leave my dorm for a week.
Once you’ve gotten HSV-1, it lives dormant in your body, and you can have outbreaks at any time. Some people have an initial outbreak and never have another one. Though I rarely got cold sores, I knew there was always the potential for another outbreak to occur. But I never thought the virus would show up in my brain.
I have always lived my life seeking answers. That’s why I became a teacher. When the doctor came in to discuss my diagnosis, I was in shock.
“How did this happen? What did I do wrong?” I asked.
“You did nothing wrong,” he replied. “It was a fluke, and there is no answer.”
“But that doesn’t make any sense,” I argued. “I eat organic. I work out. I never smoked. I never did drugs. I don’t understand.”
“It has nothing to do with that,” he said. “You are one of these rare cases, Brigid. Your body sent the virus to your brain by accident. When it happens, which is not very often, it usually happens to babies or the elderly.”
It was hard for me to believe him. I scoured the internet looking for more ― or better ― answers. It hurt my head and eyes, and I didn’t find much that felt useful or provided any closure. It didn’t help that I’d never heard of anyone with this condition. There was no one to look to for hope or to ask, “How the hell did you get through it?” I still am unsettled by this. I am left with my own theories. Maybe the chronic stress I was experiencing at that time weakened my immune system . I will never know for sure.
I only remember brief flashes of the days in the hospital that followed. I remember the neurologist from the ICU, a young George Clooney look-alike whom my mom fawned over. I remember people visiting me, but I just have blurry pictures in my mind of them sitting by my hospital bed. If we conversed, I don’t remember what we talked about. I remember stressing over my students and emailing my school while I was still hooked up to machines.
After the sticky electroencephalogram wires were finally removed from my scalp, I begged to get my hair brushed because my kids were coming to see me. They were only 5 and 3 then, and it was our first time away from each other for that long. I was scared for them to see me in that condition. They still talk about how stinky I was. They eventually had to leave because I puked. That breaks my heart.The author with her children jumping on a trampoline on her 40th birthday. "I highly recommend this for any tired single parent," she writes.
The treatment for my herpes-caused encephalitis was a drug called acyclovir, and it is critical that administration begin during the first few days of the virus taking hold in the brain. I was extremely fortunate to receive treatment within the necessary window. According to one study , the risk of death is close to 12% for patients with the virus who are admitted to the ICU. The encephalitis did cause some damage, but the doctor said if I had gone any longer without medication, I could have gone blind and fallen into a coma.
I also received an antibiotic, steroids and medications for pain and nausea, as well as infusions to stay hydrated. I was hooked up to EEG equipment to monitor brain activity, as the encephalitis caused partial seizures and preceding symptoms known as auras. I was told this is why I heard voices and saw bats. I also had sensations of deja vu and phantom smells, which are apparently also common during auras. Those subsided once I was placed on the correct anti-seizure medications.
I finally left the hospital a week later. The acyclovir had to be administered for three weeks, so when I was discharged, I continued to take it with the help of a nurse who came to my home every day. I remained on nausea and migraine medications and continued taking the anti-seizure medication as a precaution.
I felt like a new person, with a different brain than I’d had a week earlier. I couldn’t handle too much light. I couldn’t process too many words at once. All that I could stomach were little shots of Gatorade. My bedroom was filled with infusion poles, needles and bags of viral medication. I had gone from an independent single mom ― a teacher with a master’s degree in English and education ― to this weak, fragile creature.
I was completely unprepared to recover from this illness. Now, as a member of different encephalitis survivor organizations and groups, I have learned that every healing experience is different because, much like every brain is unique, so is every case of this condition. However, there are elements that most people experience: chronic fatigue, memory loss, emotional effects, and progress that can wax and wane. I felt great one day and could stay awake, complete some tasks and visit with family or friends. The next day, I would be puking and bedridden. Everything I learned during the process of recovering wasn’t with the help of the professionals ― I was given just one paragraph of instructions when I was discharged from the hospital. Rather, it was due to my own research and a lot of trial and error. I felt so isolated.
I continued to suffer from major brain fog for months, while other symptoms came and went. Only after multiple messages to my doctors was I told that recovery is “tricky” and there was no predicting how long it’d be before I felt better. I made progress, but it was slow going. I read that the brain can need years to heal and regenerate after experiencing trauma, and I found this to be true.
Months later, I still couldn’t return to work. My life was filled with doctor appointments, various therapies, hard work to complete goals I set for myself and, eventually, professional development courses to stay in the education game, all while trying to give my brain the rest it needed as I raised my kids and prepared to teach again.
On bad days, I am still incredibly fatigued, and this can be challenging as a full-time teacher and mom to active children. Sometimes I push through it. Sometimes I let myself rest. I continue to battle brain fog; I may be more forgetful or less quick with my responses, and I need more processing time. I have a whole new level of understanding and empathy for my students with neurological differences, such as attention-deficit/hyperactivity disorder. I make every effort to use the executive functioning strategies I teach my students (and my kids). Making lists, using calendars and alarms, relying on visual reminders, setting routines, breaking up tasks, problem-solving and ― maybe most importantly ― giving myself grace if I make a mistake are all crucial. None of this is easy, but I make it work and try to be a good role model for my children.The author hiking this summer with her family. "Seven years ago, I couldn't imagine climbing hills," she writes.
My divorce taught me that life ― and the future I imagined ― could change in an instant. Encephalitis taught me that you can change in an instant, too. I’ve learned that I can’t control or will anything into existence. I can only look for little bits of hope. I can hold on tightly with faith to what remains of the old me. I can still trust myself and have confidence even if I’m feeling vulnerable.
Most people who experience encephalitis caused by herpes simplex 1 will do so just once in their life. There is a spot on my brain that is scarred, much like someone who suffered from an accident or injury. I continue to take anti-seizure medication as a precaution. I will never completely get back my old self. I actually have a hard time remembering exactly who she was. I was 33 when this happened. I am now a 40-year-old woman who has faced a slew of life-changing experiences in addition to my condition, and I know I wouldn’t be that same girl even if my brain didn’t inflame. And I’m happy to say that despite everything I’ve been through, those little strands that come together and thread a person through her life ― that make her who she is ― are still there inside me. They never left. Even the virus in my brain couldn’t erase them. I know this now.
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. 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.
Encephalitis has certainly taken things from me. But it’s given me a gift. I pay much closer attention to the fragile, imperfect yet beautiful world around me. I give thanks for the people who just “get it” even though they never lived it. They offer me acceptance and comfort, and they help to remind me who I am ― the “before” me and the “after” me. Both coexist now somehow, and I’m grateful for each new day I’m given.
Brigid Ward is a high school English educator, writer of personal essays and lover of the human experience and storytelling. She is a member of educational organizations and the Society of Children’s Book Writers and Illustrators. She is currently collaborating on a chapter book with her daughter. She lives outside of Philadelphia with her family who keep her entertained, busy, and inspired. Brigid can be reached at firstname.lastname@example.org .
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