Updated: Nov 10, 2021
Mmm num ba de Dum bum ba be Doo buh dum ba beh beh
These are the opening lyrics to Queen and David Bowie's 1981 classic "Under Pressure." This is also how things have sounded inside my head for the past two months.
Let's rewind a bit.
I found out I was pregnant the morning of July 7. (This would have been my beloved childhood golden retriever's 21st birthday, a detail I find notable and worth mentioning.) Adam was on a business trip, so the dogs were the only living beings aware of this most momentous of discoveries for approximately 14 hours.
I made Adam a fancy supper and gift wrapped a few onesies. Serendipitously, I told him the news in the exact spot of our little kitchen where he proposed four years earlier.
As the world's worst secret keeper, I spilled the beans to our parents and some close friends almost immediately. (Seriously. I hate keeping secrets, so don't tell me them.) My dad cheerfully suggested I swap out my regular coffee for hot chocolate before my mom reminded him that hot cocoa also contains caffeine. My mom dropped off a stuffed polar bear she bought "years ago, when Z Galleries in Kenwood was going out of business." Adam's mom screamed, and his stepdad got teary-eyed.
We felt marveled and happy and slightly scared and excited.
But only a few weeks later, on July 22, I wrote this note in my iPhone: I wake up every morning with a headache.
Pregnancy headaches, I was quick to rationalize. It was strange that I was waking up with the headaches, but I've struggled with headaches and migraines my entire life, so this didn't feel particularly crazy. Plus, I was now dealing with them without my tried-and-true pain busters, Ibuprofen and Excedrin.
But the headaches increased in both frequency and pain. While we were in Maine and Massachusetts, I attributed the headaches to a change in weather. Back home, I rationalized they were sinus headaches. Or maybe even seasonal cluster headaches, I thought, considering how wickedly painful these aches were becoming.
My OBGYN wrote me a prescription for magnesium oxide, but that didn't do much of anything. I felt immense guilt any time I broke down and popped a pregnancy-approved Tylenol or Benadryl, the voices of the all-natural-or-bust masses loud in my ear.
Eventually, my OBGYN recommended I see my neurologist.
Let me pause here to tell you how much my neurologist rocks because this will come up again later. She's smart and empathetic with a talent for translating complex medical jargon into every-woman speak.
My neurologist and I chatted not only about my headaches but about all things MS, pregnancy, and motherhood. When she took a look in my eyes, she noticed my left optical disc was slightly swollen.
"It could be residual from your 2007 pseudo tumor incident," she said.
Or it could be a sign I was experiencing idiopathic intracranial hypertension. Again.
I was terrified—and mind-boggled—at the possibility. As a junior in high school, I suffered a pseudo tumor (or IIH) as a side effect to an acne medication called minocycline. The experience was h-e double hockey sticks. My mom rushed me to the emergency room with doubled vision and vomiting from the head pain. I was given a spinal tap to relieve the pressure in my head, which resulted in a spinal leak, and the recovery was longer and harder than expected. I lost some of my peripheral vision because of permanent eye nerve damage.
There's no way it's a pseudo tumor, I thought, especially since I suffered IIH as a side effect to a medication I was certainly no longer taking. And yet as my appointment with the neuro ophthalmologist drew closer, the signs were becoming more apparent.
The headaches became daily occurrences, and they started within two hours of lying my head down for the night. The pain was searing, and it was almost as though I could hear a thump-thump-thump inside my head. My vision was beginning to act up, too. During Adam and my anniversary dinner, I realized I couldn't focus my vision on him across the table.
Something serious was up.
I reached out to my neurologist again, and she got to work approving me for an MRI/MRV. Not only were we going to see if the IIH had returned, but my doctor wanted to rule out cerebral venous sinus thrombosis (CVST). CVST is a rare form of stroke, but pregnancy does increase your risks since growing a bebe affects one's coagulation.
And then I was left in a terrible limbo as insurance took their sweet time approving my imaging scans.
Was it IIH? Was I about to have a stroke? Or were these simply pregnancy headaches? It was a terrible headspace—literally and figuratively—to be left in.
After six days (!!!), my insurance finally approved the MRI/MRV. I was able to be seen that very day, and I've never been so happy to lie in an MRI tube. Our already very wiggly baby was rocking and rolling during the procedure. Even though noise is muted inside the womb, I imagine all the banging and drumming and beeping was quite stimulating.
I mean, what a lame outing to attend with your mom.
(But maybe the baby will choose a career in neuroscience someday? I can't explain it. I've just always been attracted to the sounds of an MRI machine, he/she will say, a wistful sort of look in their eyes.)
My neurologist reached out to me the very next morning—again, she rocks—and I was relieved to hear CVST had been ruled out. I was showing signs of IIH instead. She gave me options: I could wait and see how advanced the IIH was after my visit with the neuro ophthalmologist the following week or I could begin to pursue a spinal tap.
I knew I wanted the spinal tap.
The problem was, spinal taps usually require fluoroscopic (or x-ray) guidance. And as a pregnant lady, that wouldn't be an option for me.
My amazing neurologist got to work finding me an anesthesiologist who would perform the procedure under these conditions. Not only did she find someone, but I was thrilled to see he had a perfect 5-star review on Google.
Adam and I met with him only two days later. He examined my back and said that yes, he would be able to go in without x-ray guidance. I thanked God that my back is one place I've never carried a lot of excess fat. (It probably doesn't work this way, but that's how I imagined it. Can I see your spine clearly? Great! I'll go in!)
That following Monday, we had our 20-week anatomy scan. The baby weighed 11 ounces and rarely slowed down enough for his/her photos. The ultrasound technician was a sort of magician and managed to capture almost every shot she needed. The upside of this is that we'll get to see Baby Mueller again at 24 weeks.
That Tuesday, I saw the neuro ophthalmologist. He looked in my eyes for approximately two seconds, declared he did not see any swelling, and made me feel incredibly stupid and crazy. "My neurologist saw evidence of IIH on my MRI scan," I reminded him.
"You could take 100 people with MRI scans that show IIH, and 10 of them actually wouldn't have it," he replied, to which I wondered how I was supposed to respond. Should I assume I was a part of that 10%? But I felt so terrible...
"What about my other vision changes? I've been having floaters almost constantly," I said.
He shrugged. "Probably a pregnancy symptom."
When I pressed him about what causes floaters, he launched into a textbook explanation that would have been helpful to me had I been preparing for an exam, but didn't exactly feel applicable to my daily life.
So there I was, the night before my scheduled spinal tap, feeling more confused than ever. What if I had blown this whole thing out of proportion? Was I being ridiculous getting the spinal tap the next day?
While I was praying before bed, the following sentiment washed over me: You know your body. Something isn't right.
I held that close as Adam dropped me off for my procedure the next morning. Loved ones are not permitted into the procedure room for obvious reasons, and since the Pain Management waiting room tends to get crowded, it was recommended Adam drop me off and then pick me up afterwards.
I wore my favorite red pea coat with the pearl buttons I sewed on in high school while watching a YouTube tutorial. I had showered and put on a full face of makeup. I wanted to feel my best going into this thing.
At least the baby would be there with me. Again, another rotten mother-child activity.
I cannot emphasize how warm, kind, and compassionate the anesthesiologist and his team of nurses were. My spinal tap took about 30 minutes and was admittedly more painful than I anticipated—think of an ache moving along your spine and having to keep so, so still.
But oh my heart, the doctor and his nurses couldn't have been more wonderful. They asked me about baby names and we all exchanged the craziest birth stories we knew. We talked about my three dogs and how Adam's nearly 100-year-old grandfather still has all of his original teeth.
I even laughed (gently, of course, as to not disturb the doctor and his needle) during one point, and who the heck laughs during a spinal tap?
And guess what? I wasn't being crazy, stupid, or dramatic. I had over 2x the appropriate amount of spinal fluid pressure in my head. It was no wonder I had felt so crummy for so long.
I won't sugarcoat the next five days—they were rough. Spinal headaches are intense and painful, especially without Ibuprofen, and I threw up a lot from the pain. At some points, I honestly felt like I was dying, that is how searing the head pain was, and there were a lot of tears.
So many tears.
You are supposed to lie completely flat after a spinal tap, only getting up to use the restroom, and if this is ever in your future—follow this advice! My recovery could have probably been a few days shorter had I not tried to work propped up from bed the day after the procedure.
Adam was, and continues to be, amazing. (Is he even real? Or did my heart manage to bring to life a Nancy Meyers caliber heartthrob?) He gifted me an early birthday present, a rattan serving tray so I can revisit my childhood glory of birthday breakfasts in bed, and despite my lack an appetite, he continued to bring up nourishing meals in hopes of its return. He called all of my doctor's offices (and my mom) when he got worried about my pain levels. He was constantly running out for more caffeine, a smoothie, whatever I needed in the moment. And oh boy, did he shoulder a lot of tears.
The dogs provided incredible comfort—I always had at least one of them in the bed beside me—and my mom coming over to sit with me was one of the biggest emotional boosts of all. Sometimes, you really do just need your mom.
It's been one week since the spinal tap, and I now feel better than I have in months.
I am fortunate to have a neurologist who cares about me and was willing to be my advocate. You need someone like that in your corner. I am forever grateful to the anesthesiologist for agreeing to do my procedure and for doing it with such compassion and care. I am blessed to have such a wonderful husband, family, friends, and coworkers—thank you, thank you, thank you for all of the flowers, meals, cards, care packages, well wishes, and prayers. They have meant the world.
I am happy and so darn relieved to have this stressful chapter behind me.
I look forward to complaining about normal pregnancy symptoms, like heartburn and swollen feet! ;)