The “Headache”

After the lumbar puncture, I had an awful headache and my back hurt so much that it was hard to walk. The intense, piercing headache subsided pretty quickly. But, the intense back pain that made me walk hunched over, in slow, deliberate steps lasted into the next day. It was hard to sleep that night. My back hurt. And, I was afraid that the wiggly seven-year-old that insisted on sleeping with me would bump into me. Not only was I sure that him bumping into me would hurt, I had an irrational fear that somehow that could cause spinal fluid to gush out of my back. So, I slept with my back away from him, on the far edge of my bed. Fortunately, by the next day I felt better.

In the beginning, I was eager to get back to “normal.” I thought my vision would come back quickly and would be able to work, drive, and handle all the minutia of daily life. But, my vision improved very slowly, I had side effects from the steroids, and the lumbar puncture was worse than I anticipated. I kept thinking I would be fine any day, but I wasn’t. In hindsight, I tried to go back to work too soon. I should have taken more to rest and recover.

The week before the lumbar puncture I was finally seeing noticeable improvement in my vision and I was weening off the steroids and feeling less side effects. I told work that I would be back full-time, except for some doctor’s appointments. I started working again, from home. I took off the day of the lumbar puncture because, with travel, it would take most of the day. I’d already taken over a week off of work and my office had been very supportive. But, I was eager to show myself, and everyone else, that I was okay and I could do my job.

Normally when I work from home, I sit at a desk in my bedroom. After the lumbar puncture, I was a little sore and didn’t feel great. So, I mostly worked laying on the couch, laptop on my lap. I was able to drive my son to on-site care. It’s a short drive, but every time, I would get nauseous. I thought it was my vision. Trying to drive with one eye blurry makes you feel very dizzy and disoriented, like you are extremely hung over. Turning was especially hard. Looking left and right, one eye in focus, one blurry, moving side to side while cars are moving. So, I kept one eye closed. I managed.

That Friday, I had planned to go into the office for a series of Zoom meetings. It was my first day back in the office since I had woken up, unable to see out of my right eye, two weeks before. I thought I could handle it. I dropped off my son and headed to work. Again, I was getting nauseous and dizzy. I stopped to get coffee and something to eat, thinking that might help, like it does for a migraine. As I drove into the office, I took deep breathes, I kept one eye closed, and I closed my eyes at red lights. I should have listened to my body and stayed home, but I was determined to go to work. I thought I’d be fine once I got there.

When I got to my office, I logged on to Zoom and started the first meeting. As I sat at my desk, looking at the screen, I felt worse and worse. I thought it was just my vision, that I was dizzy because I was looking at the screen with two eyes, one blurry, one normal. But, I was on video; I couldn’t close one eye to ease the discomfort. It felt like someone was squeezing my brain in a vice. I tried to act normal, look down, off screen. I was trying, with every fiber of my being, not to vomit. As soon as the meeting ended, I turned and vomited, over and over again, into my garbage can while my colleague was still on the call.

Even after that, I tried to do a second meeting. This time, I turned my camera off. If I could just close my eye and not try to look at the screen with both eyes, I’d be fine, I thought.. But, even with my head down and my eyes closed, the nausea swirled in my body and my brain felt like it was been ringed out like a wet towel.

After the second meeting, I decided to lay down and close my eyes. After I laid down for a few minutes, I felt better. Okay, I’m fine. I can do this. But, my boss, who’d heard about my vomiting, told me to go home. He had a co-worker driver me home in my car, and someone else followed to drive him home. No debate.

I felt okay after laying down and thought I’d be fine. I got in the passenger seat of my car, with my mask on, and let myself be driven home. On the ride, the nausea began swirling again. I closed my eyes. I leaned my seat back. I rolled down the window. I tried to keep it down, but the nausea built and built and erupted. I vomited into my mask, it spilled out all over me, and my car, in the middle of the freeway. My poor, sweet, co-worker was stuck in the car with me. He stopped in the gore point of the freeway and I dumped out what vomit I could, but we were only half-way to my house. I sat covered in vomit, and humiliation, as tears filled my eyes and rolled down my checks.

At home, I walked in, took off my clothes and immediately threw them in the washing machine. I curled up under a blanket on the couch. I was scared. What is wrong with me? Should I go to urgent care? I called my mom and emailed the neurologist. And then I took a long nap, while my mom drove over to my house to take care of me.

At some point, I realized, I felt fine whenever I was laying down. I got a headache and nauseous when I was sitting or standing. And, the longer I was upright, the worse it got. Was this the lumbar puncture headache they described? I only remember being told I might get a headache that would go away if I laid down. This is what the Mayo Clinic says about the headache:

“Post-lumbar puncture headache. Around 25% of people who have undergone a lumbar puncture develop a headache afterward due to a leak of fluid into nearby tissues.

“The headache typically starts several hours up to two days after the procedure and may be accompanied by nausea, vomiting and dizziness. The headaches are usually present when sitting or standing and resolve after lying down. Post-lumbar puncture headaches can last from a few hours to a week or more.”

I spent the next several days on the couch. If I stood up for more than a few minutes, I got nauseous again, and the headache started building. So, I ordered Door Dash, binged Netflix, rested, and let people take care of me.

Throughout this ordeal, my village of family, friends, and collogues,, near and far, have been there for me, offering love and support, and lots of rides.

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