Bacterial Meningitis and the Skull-Crushing Migraine That Ensued

I’ve struggled with migraines for most of my life. I’ve gone though periods of time where they were manageable, and there have been times where I’ve been down and out for days or even weeks with debilitating migraines. Nothing, however, compared to the skull-crushing migraine I got with bacterial meningitis.

How did my skull-crushing migraine start?

Back in November, on a Wednesday afternoon, I felt a migraine coming on. I took my preventative medications, tried to hydrate as best as possible, and went to sleep early to try to give it time to improve while I was unconscious.

The following morning, I was supposed to have an 8 am telehealth therapy session, and I remember texting my therapist early in the morning. Looking back, the text wasn’t very coherent, but she got the intention - I had a migraine, I couldn’t even sit up, and I needed to cancel our appointment. I went back to sleep, and the next several hours were a blur to me. My husband came into our room and tried to wake me up and get me out of bed. I was mostly incoherent, not making sense and having trouble finding my words. My head was throbbing so badly, and I had a 105 fever. My husband thought I was having an adrenal crisis (I also live with adrenal insufficiency) and gave me my emergency steroid injection, and rushed me straight to the hospital.

How did the hospital treat the attack?

In the ER, they ran a bunch of tests and admitted me to the hospital. For four days, they tried everything they could to attack the migraine that was unbearable. I had to have my sleep mask on at all times to block out the light, every time I moved even just turning over in bed I cried out in pain for how badly my head hurt, and I was struggling to function. My husband asked if they would consider doing imaging of my brain based on these symptoms and my migraine history, and the doctors agreed.

What did they discover?

First, I had a quick CT scan of the brain which showed a small spot, which could’ve been a number of things. A follow up MRI showed an abscess in my brain. This meant that there was likely some type of major infection in my body. The infectious disease team came to see me in the hospital and told me they’d like to do a lumbar puncture or spinal tap to help the diagnostic process. A few hours later it was confirmed that I had bacterial meningitis. The skull crushing migraine was due to the fact that my meninges, or the structures under your scalp that protect your brain, were infected. No medication they gave me made the pain tolerable.

How did they treat my bacterial meningitis?

The day I was diagnosed with bacterial meningitis, I was started on heavy duty IV antibiotics and after 12 days in the hospital, I was sent home with them. For six long weeks, I had three, three hour infusions per day at home using two different antibiotics to kill the bacteria. During this time, the throbbing in my head and the light and sound sensitivity pursued. I found a combination of PRN (as needed) medications that when taken together made a small difference, but for two long months I started and ended every day with throbbing in my head.

How bad was the pain?

The hardest part of this was that I couldn’t do anything to distract myself from the pain. I couldn’t watch or listen to anything because it made my migraine more insufferable, so I laid in bed, usually with my eyes closed, and just thought, tried to make mental lists, tried to remember all the things I liked to do and would hopefully be able to get back to soon.

Why am I seeing a new doctor?

For the last few years, I’ve been seeing a headache specialist to manage my migraines, and I’ve been fairly happy with her. However, she is not a neurologist specifically, she's a general practitioner who specializes in migraine care. Meningitis symptoms (including the associated migraine) can take months to years to fully resolve, and I realized I needed a more specialized neurologist practitioner to manage my care once I finished my course of IV antibiotics. As I prepare for an appointment with a new provider, I am thinking about how to make the most of our short meeting together. For a list of suggestions on transitioning to a new care team during a migraine flare, this post could be helpful for you.