I distinctly remember my first attack. It was the middle of the night, during the middle of week, in my second semester of college. I woke up and the room was spinning. Not just ‘oh maybe I drank too much’ spinning, it was like someone had taken my head and was swinging me around like a ball attached to a stick, as fast as they could. It was a feeling I couldn’t (and still can’t) fully attach words to.
It’s debilitating.
I knew I was going to vomit, so I crawled out of my top bunk, grabbed the trash can and crawled into the empty hallway. For at least two hours I laid on the tile floor, got sick, and prayed it would go away. I had no idea what was happening to me.
Vertigo.
The first time I heard that word was in the doctor’s office later that day. Since that day it’s become an unwanted part of my vocabulary. In my 20’s the attacks were few and far between. In my 30’s the attacks became more familiar, longer and more violent. In my 40’s as I’ve navigated perimenopause, vertigo has been an all too familiar villain in my life, as well as the lives of the people who love me the most.
For almost five years, we had figured out the formula to keep my vertigo away. It was the villain in the closet, always on our minds, yet tucked away, uninvited to the party. Until it came screaming out the doors and flung itself back into our lives this past March, 2023.
When the attack hit in March, as I violently vomited, with my dear husband holding my hair and the bucket for me, I sobbed and sobbed. I didn’t want to be back on this path. I wanted the freedom I’d had for five beautiful years.
Yet, in that moment, I knew it was back for a long time.
Little did I know then, it had a purpose.
Once the return attack was mitigated by medication from a visit to the ER, the headache kicked in. A headache that lasted a month, every day pain and intense brain fog. I slipped into a depression as the pain carried on. My doctor ordered an MRI for a few weeks out. Then the next attack hit, exactly a month later in April, 2023 (Easter morning, in fact).
As my husband drove me to the ER, yet again, I remember thinking “well I’ll get my MRI sooner.” In fact I did get that MRI, and a cat scan too! The two tests helped the doctors determine I had what is called vestibular migraines (not Meniere’s Disease as originally proposed) and another “incidental finding.”
That finding knocked on our asses and stunned us into silence for hours.
UnRuptured Brain Aneurysms.
As I sat in the grossly uncomfortable ER bed I stared at my husband, trying to read his face while personally not fully comprehending what we’d heard.
{Why was I still alive? Don’t aneurysms kill people?}
“Yes, we found two small aneurysms. They are an incidental finding, it’s more common than you realize. You’ll have to be seen by a neurosurgeon as an outpatient for the full workup once you feel better. We see this more often than people know”
1 in 50 people, like me, have brain aneurysms.
An agonizing month later I set foot in Dr. Manoochehri’s office for the first time. His patience, kindness and in depth intelligence soothed my heart as he explained that I was on a new journey, separate from my vertigo path. He’s the one who said “they aren’t related, but your vertigo could have saved your life.” He recommended a brain angiogram to get what he called “the gold standard of pictures of your brain.”
A few weeks later I underwent my first angiogram. An odd yet extremely fascinating experience I now have learned I will undergo several times more as we navigate this path.
A few hours after my first angiogram, Dr. Manoochehri (I call him my favorite gentle giant) lumbered my post procedure room with his calming presence and said “Well, Jane, I’ve got some things to show you about your interesting brain.”
You have, not two brain aneurysms, Jane, but
Four.
Two behind each eye.
And you’ll need surgery on all of them.
Once again I looked instantly to my husband’s face. He sat staring at the screen and then looked over at me. “Wow” he whispered. “Yeah, wow” I whispered back. Both of us stared at the screen in amazement and intense fear.
“Go on your vacation to Disney World and then we will do the first surgery.”
Dr. Manoochehri snapped us back to reality.
So that’s what we did. We went to see the Mouse.
And then I came home and had my first brain surgery on July 17, 2023.
Recovery was slow, beautiful, purposeful, challenging and gut wrenching.
After battling some “too thin” blood issues, passing out, lots of headaches, exhaustion, difficulty with noise & light, and excessive bruising I found my way to the end of the summer. As school started again I began to feel myself again and looked forward to being with my students again, as they have been and always will be, my grounding force in life.
So that’s where I am now, on this new listening journey. One in which I’ve found how to be still, listen deeper, let go of my need of control (ok, maybe still working on this one) grow closer to my God, love harder and love bigger, and be deeply grateful for the one thing I hate the most in this world, vertigo.
Warmly,
Jane
p.s. Erik and I are walking in the Brain Aneurysm Foundation walk in Philly this weekend. If you would like to donate, we’d love it, as the government only spends $2 per person afflicted with brain aneurysms! Here’s the link: Team We Can Do Hard Things
Saved by vertigo and saved by MS; found each other through brain aneurysms!!! ❤️❤️
Wow, Jane. Wishing you all the best as you make your way through.