A Very Incorrect Spine, Plus a Brain Cyst For Good Measure

Alternate Title: It Gets Better! But Wait, It Gets Worse

As it turns out, some girls grow out of their major dysautonomia symptoms. As it also turns out, I am one of those lucky ladies. I still struggle with orthostatic hypotension and heat flashes and whatnot, but not to the same extent I did before. I can get out of bed in the morning and be fine, I just can’t do crazy things like… bend down on purpose. My head still has to stay over my heart, but I became a relatively normal-functioning person. I can’t pinpoint exactly when it happened, as it was gradual, but at some point I just…got better. I stopped walking with mobility aids. Later, I was able to go off midodrine. It was a miracle. 

I don’t even know if I truly realized how well I had become until I became super constipated and fainted off the toilet again. Then I realized, wow, I haven’t done that in a really long time and have actually taken this entire time for granted, and wow, that really sucks even more than I remember it sucking! Because I was so unaware of how well I was doing, I have no clue how much time passed in the golden ages. (Okay, it was not actually that long, but there WAS a decent amount of time where I just lived a relatively normal life without fainting or being in pain. Roll credits!)
(Just kidding. This is where the story actually starts.) 

In 2019, when I was 18, I was in a very minor car accident with a very awesome dude named Casper (hi, Casper, hope the biz is doing well nowadays). I had a bit of whiplash that presented itself the next day and stayed around for a few days. It was all to be perfectly expected for someone who had a baby case of whiplash. The thing is, this is the only event that allows me to pinpoint when I started experiencing chronic pain on a daily basis. I don’t know if I was having neck and back pain before this (I very well could have been), but I know for sure that I definitely was by this time in 2019. I am not attributing my continuing pain to the accident, because I already had dysautonomia (which you’ll see is connected to this) and there is a whole laundry list of reasons why I have chronic pain that is not related to this at all. 

It’s difficult to pinpoint because it came on very gradually, so it wasn’t like I woke up one day and suddenly everything had changed, rather my lifestyle adapted day by day until suddenly I had a new reality. That reality was being in pain all day, every day. It was the worst in my lower back and neck, but it wasn’t limited to that area, oh no. It was in my low back, mid back, shoulders, hips, arms, legs, wrists, ankles, elbows (elbows???), knees, and other random places I didn’t even think about having existed. It wasn’t even like “oh, my legs hurt today,” it was like “wow, my left calf is throbbing for absolutely no reason right now,” but then five minutes later that pain was gone and I was complaining to my mom about my sudden ear pain. 

It was random pain that made no sense. Sometimes it was consistent, sometimes it would throb and pulse, sometimes it would ache, sometimes it would hum, sometimes it would sting or burn. Sometimes it would ebb and flow, and sometimes it would linger for days at a time. It always varied in intensity; some days were far more manageable than others. My neck and back (and more frequently, hips) seemed to always be in consistent pain no matter what, with other random pain being sprinkled in day-to-day like I was spinning a mystery wheel of torture in my sleep or something. 

My mom was dealing with frozen shoulder at the same time, so our fun/miserable little tradition was to rub Tiger Balm (a heavenly analgesic ointment) all over each other. (It stings so good.) I don’t know exactly how the lines blurred between my dysautonomia basically leaving and then this being my new daily tradition, but it happened. 

It is worth noting that this entire time I am still experiencing my hyper-sensitivity to things that shouldn’t cause pain, but I still assumed this was normal for everyone and didn’t know any different. 

At some point in the same year, I was having a particularly bad episode of combined back and neck pain that was keeping me miserable in bed. (Ohhhhhhh. By the way, I should probably mention that I was sleeping A LOT. Like, a lot. Like, way more than a human should be sleeping. But we’ll get to that.) Eventually, I also came down with a nasty headache that continued to keep me in bed. We have established that I’ve suffered from chronic headaches my entire life, but this headache felt different – not in a fun way, unfortunately. Yes, poor sleepy Isabelle was experiencing the onset of her first migraine. Achievement unlocked! 

I don’t remember the order of events, just that they happened: I was having some weird-ass symptoms with this headache. The right side (I’m 98% sure it was the right side) of my face went completely pins-and-needles numb. I was having weakness in my limbs on that side of the body, and it’s also probably worth noting that this was the same side I was having the actual migraine on. I was having trouble talking, and kept mixing up the sentences in my words. I mean, the words in my sentences. When I started having slurred speech, my mom took me to urgent care.

It really did seem like I was having a stroke, so I had an emergency brain scan. I was in a lot of pain, and had spent the past several days in bed. I was eventually diagnosed with hemiplegic migraines, a rare yet fun kind of migraine that mimics a stroke but isn’t. They gave me a pill called imitrex, which actually made my head hurt way worse, so that was an epic fail. Then they prescribed me a daily medication to take for my headaches called topiramate. It actually worked, which was amazing! At least, it was amazing until 2021, when I realized my headaches had gone away (fascinating, right?) so I decided to go off the medication (stupid, right?). 

It’s a bit more complex than that, as I strongly dislike being on medications and wanted to test if it was still necessary – I just happened to learn that it was, but didn’t ask about going on it again until 2023 when I realized “oh yeah, I’m having a headache every single day of my life again, and there was actually a thing I did before to stop that.” Tee-hee. 

I got to talk to a doctor at the clinic about my back/neck pain as well and he did a quick physical examination. He basically said “girl, fix your posture, your spine is the WRONG shape” and then referenced me to physical therapy. 

He told me (and wrote it down in his fancy doctor’s notes, which is the only real reason I remember) that I suffered from something called lordosis of the spine as well as hyperkyphosis of the spine. Yes, yes, I understand, thank you doctor. But allow me to get in the car and google what the hell you just said for a minute. 

Here we have a demonstration of lumbar lordosis. Next, we have a demonstration of a kyphotic spine. Wait, what do you mean I have both?? WHAT DOES MY SPINE LOOK LIKE??? 

Reader, my spine was a backwards letter ‘S.’ I was not in very good shape, to say the least. I had a hunchback AND a swayback, because I had style. I am hella cool. I know I am a trendsetter, but we can lay this one to rest, ladies. 

After a stressful wait, we got the results of my MRI, which showed nothing of note besides, oh yeah, an 11mm cyst in my pineal gland. The notes said, and I quote, “likely incidental.” No, this did not comfort me in the slightest. (Likely incidental? LIKELY??) 

Do I still freak out about it sometimes? Absolutely. Sometimes I’ll be putting too many blackberries into my Costco cart and then I’ll just stop and think “Dang. There’s a cyst in my pineal gland right now. That’s crazy.” And then I just carry on about my day like there isn’t a cyst in my pineal gland. 

The entire timeline on this gets very messy, but remember how I was sleeping way more than a human should be sleeping? Like, I would go to bed at 10pm, wake up at 3pm, eat, go to the bathroom, go back to bed, sleep in until noon the next day. I might get up to go to the bathroom or grab a snack but then I was out. No matter how early I went to bed, I could easily sleep in until the next evening if no one woke me up. So this was another concerning thing. 

Everyone was like, well, she’s a teenager, she’s goin’ THRU it, she’s anxious and depressed, this is how she’s coping right now I guess we’ll just let her sleep… and I was ever so happy to sleep my life away. I loved my cozy bed and sleeping away the world. 

When the plague restrictions ended and I went back to work, it was very difficult for me because I could barely stay awake. I was always yawning all day and felt like the energy had just been zapped from me. Every day for months and months and months and months, I would wake up in the morning and anticipate the moment I could go back to bed at night. I was just so, so, so weary, and so, so, so tired. 

Spoiler alert: I’M ANEMIC, Y’ALL! I HAVE VERY LOW IRON! 

But we would not find this out for a long while, which is pretty frustrating in hindsight. Especially when you realize that my iron levels were slightly low in 2015, and on the lower end of normal in 2021 (my doc told me to eat more leafy greens, which I probably did for like two days), so there were signs. I am getting slightly ahead of myself in the timeline, here, but this fatigue and sleepiness problem persisted for YEARS before we figured it out, which sucks. I didn’t get this solved and start an iron supplement until recently in 2023, when I was sleeping 16 hours a day and sabotaging my entire life because all I did was sleep. I repeatedly slept through and missed a 4:30pm yoga class because, you know, I didn’t think I would have needed to set a morning alarm to wake up in time for that, but oh, I did. (I am so sorry, Katie.) 

Often I would wake up and see the time, thinking it was just a couple hours later, but it was actually THE NEXT DAY. I never knew what time or day it was, which was very disorienting, but I actually didn’t care and would just go back to sleep because I was so tired. Plus, everything hurt, and I usually had a headache too, so why would I not want to sleep, anyways? I don’t even know how I got anything done during this time in my life. The kicker is, it didn’t matter how much I slept, I could never catch up. I lived in a permanent state of exhaustion. But I think you get the point.

At this point in my life, I am no longer regularly fainting and my blood pressure is relatively stabilized so long as I don't tempt fate, but I am experiencing chronic pain all over on a daily basis, I'm having chronic headaches and now migraines, I'm generally miserable again, and all I can accomplish is sleep. But, I have been referred to physical therapy for my weird spine, so I have some hopeful next steps!

Stay tuned for amazing PT, horrible insurance, a very frustrating doctor experience, and yet another diagnosis?!

Autonomically,

Isabelle