life

I guess it’s Brain Awareness Month?

To be honest, it strikes me as a bit egotistical.

I mean, the brain is the only organ that named itself. Now we’re gonna let it decide it gets its own month?

Anyway, I’m not a fan of brains, personally. At this point in my life, I think I’d rather have a sort of undifferentiated network of nerve tissue, or just be some kind of sentient alien gas cloud.

For Alzheimer’s and Brain Awareness Month, I want to talk about what a complete pain in the ass it is to be properly diagnosed with anything neurological.

The trouble with many neurological disorders is that they often don’t have a nice, neat, non-invasive blood test that can definitively tell you what you’ve got in a visit or two. There might be a weeks-, months-, or even years-long pattern of behavior that you need to exhibit first. There might be some other symptoms that, at first blush, don’t seem like they’d have anything to do with your brain. They might need to take a bunch of pictures of your brain and then stick giant needles in your spine. It’s kind of a crap shoot.

This isn’t to complain about doctors, per se — when they hear hoofbeats, they’re trained to look for horses, not zebras. This approach usually works pretty well, unless you’re a zebra.

All my life, I’ve had what I thought migraines. I regularly felt crushing pains in my neck and head, to the point of being dizzy, hallucinating, and throwing up. Sometimes, I’d notice my hands leaving “vapor trails” wherever they moved, like some kind of bootleg Etch-a-Sketch. I had an inhuman amount of trouble seeing things in my peripheral vision during driver’s ed, to the point where I never properly learned to drive. I was told it was anxiety and I needed to manage my stress level.

I could hear what sounded like distant drumming in my ears. The pressure in my head sometimes felt like someone tightening a belt around my skull. Sometimes, the thrumming and drumming sounded almost whispery, like voices. I was told I was hallucinating and paranoid and I needed antipsychotics.

After awhile, I noticed that I had double vision. A person I dated at the time told me I was a hypochondriac, and I watched “too much House.” Around the time I lost my grandmother to brain cancer, a doctor told me that these symptoms might not be something I could just keep ignoring — in fact, they sounded a lot like a brain mass of some kind. I was uninsured and couldn’t afford the imaging I needed, so I languished in medical limbo instead. (Naturally, I didn’t express my concerns to my then-boyfriend. Why would I, when he mocked me for being worried and told everyone around us that I was exaggerating?)

A few years later, I noticed that I always seemed to have retina fatigue. My eyes seemed to keep impressions of whatever I looked at, for way too long after I’d looked away. I had odd flashing spots. I thought it might be from my new contact lenses, but, just in case, I downloaded an Amsler grid to see if my eyeballs were just malfunctioning somehow. Sure enough, the wavy, warped, and missing lines told me something really, really wasn’t right. After one episode where I wasn’t able to see anything and went to the ER, I was told it was atypical optical migraines and I needed migraine medication.

It was another three years and a cross-country move before I was actually properly diagnosed. After years and years of misdiagnosis, someone finally scanned my broken head (there was no mass) and stuck a needle in my spine (but there was an absolute shitload of extra spinal fluid). My opening pressure, the fluid pressure at the beginning of the spinal tap, was roughly twice what is considered normal — 29 mmHg (39.4 cmH2O) compared to 7-15mmHg (9.5-20.4 cmH2O). Whoops!

Your body has a lot of mechanisms in place to maintain your cerebrospinal fluid pressure within a range of ± 1 mmHg. Mine… doesn’t. For some people, this is because of medication — steroids, hormones, antibiotics, certain pain killers, and even antacids can all increase cerebrospinal fluid pressure, but it goes back down once the medication is discontinued. I wasn’t on anything at the time I was diagnosed. So, my case is considered “idiopathic,” and, in all likelihood, congenital. It will never leave me, I will never be cured. I’m stuck with it until I either go into remission, or die. Welp.

Munchausen Syndrome and hypochondria exist, but they don’t describe everyone that’s struggling with the medical industry.

Sometimes, you’ve just got a zebra brain.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s