A Smörgåsbord of Side Effects

Here’s fun: Which of the Seven Dwarves are you most like? You may check up to ten if you’ve recently had a craniotomy.

○ Sleepy	○ Sleepless	√ Dopey (I’ll just go ahead and check this one for you now.)	○ Happy	○ Super Happy! 😁😍
○ Grumpy	○ Aggro	○ (call your) Doc(tor immediately if you have suicidal ideation)	○ Bashful Weepy	○ Sneezy Sweaty
○ Ravenous Sugar Beast	○ Peevish	○ Anxious	○ Drowsy	○ Shaky
○ Depersonalized (Holy crap! Really?!)	○ Manic	○ Obsessive	○ Dizzy	○ Easily Distracted

 If you checked five or more, you’re probably taking a corticosteroid for brain swelling and an anti-seizure medication. Welcome to fun world of Decadron and Keppra! Fortunately, your visit to this world will only last a few weeks, but you may want to strap yourself in (and your loved ones) for the wild ride. Your results may vary, but here’s how I responded to the meds:

My Decadron issues began the first night in the hospital. After surgery, your body and brain are exhausted and there’s still anesthesia working its way through you. Sounds like a great time to sleep, right?

I wish.

○ Sleeplessness                      ○ Obsessive-compulsive thoughts               
Of course, I had nurses waking me up to take vitals and do neurological tests every hour or two, so my sleep was interrupted, but my freakin’ mind just wouldn’t shut off. I think the first night, I was disturbed by instructions for creating a Google Chrome playlist. Here’s the kicker: I use Groove Music for my playlists and I only ever use the Chrome browser at work, so my instructions weren’t even accurate. And, more importantly, at that moment I. Couldn’t. Care. Less. But I spent a few hours thinking about it anyway.

The next night, at least I got a video to go with my obsessive thought loops: Some guy I barely knew in high school posted on Facebook that he went for a bike ride. This endlessly repeating concept kept me awake for FIVE HOURS. I felt that if I could just get to the end of it, I would understand the point and be able to stop thinking about it. But there was no point! And there was no end! My brain was torturing me.

I had several such nights of boring-ass, pointless, incessant thoughts that prevented me from sleeping at night and napping during the day. However, I did have these other side effects to distract me:
○ Blurred vision (just a few days)   
○ Feeling wired (I started this blog and feverishly wrote posts for it in the first week and a half after surgery.)
○ Trouble thinking (Hard to say what’s the meds and what’s the surgery; see post “A Tale of Two Mondays” for an example. Or almost any other post, for that matter.) 
○ Sweating (Usually at night, and I’d often wake up with my pajama top damp but I was already chilled.)       
○ Increased hunger (My stomach was an abyss into which food disappeared without leaving a trace. I totally marked “Ravenous Sugar Beast” above.)
○ Full face and neck (Linebackers would envy my neck girth right now.)
○ Unexplained weight loss (I’m not complaining about this one, especially given the “Ravenous Sugar Beast” thing. Weight gain is far more common.)
○ Muscle weakness (Just a few days, but I hated feeling so frail. Walking, though it tired me, helped combat this sensation immensely.)
○ Muscle pain (Hmm, maybe… see future post “From Zero to Excruciating”)

But I tapered off the Decadron in about three weeks. The sugar beast went away, as did the manic energy. I missed that a bit because I was getting sh** done by waking around 4-5 in the morning and getting out of bed at 6:00AM – and I was never a morning person before surgery.

And then Keppra started showing what it could do. After my neurosurgeon first mentioned Keppra, I looked it up and emailed my sister the link listing the possible side effects. Her response was, “So Keppra’s potential side effects are … all of them?” Yep, pretty much.

I’ve used the word “fortunate” a great many times in this blog because I have been. One of the first side effects mentioned for Keppra is “anger, rage, hostility.” So far (and knock on every piece of wood in the house), I have not experienced that, but judging from what I’ve read of other people’s experiences this is what it is like (and I turn again to Bears vs. Babies from the brilliant creator of The Oatmeal):

If you see this face on a recent craniotomate, RUN! The Keppra Bunny will bite your friggin’ head off and then sob hysterically because your stupid bones hurt her teeth.

My Keppra experience has been more of a sampler platter of minor effects:

○ Euphoria (For a while, I loved EVERYBODY! I felt GREAT! I THOUGHT IN ALL CAPS! CRANIOTOMIES ARE FUN! And then I realized that there are some notable exceptions to my love list, that occasionally I felt like I had just had brain surgery, and that it’s hard to read all caps.)
○ Irritability (Poor Brian nearly got an elbow in the sternum one early morning when I felt he was too twitchy and breathing on me.)
○ Shakiness                ○ Sleeplessness (Yep, a double dose of that.)  
○ Tiredness (Cruel when you can’t sleep.)
○ Trouble concentrating (I went from nigh-laser focus to … Squirrel!)
○ Pale skin (About two weeks in, I suddenly resembled a vampire.)
○ Loosening of the skin (Disturbing. The skin on my calves felt loose and sensitive for a couple weeks. I didn’t like touching it because it felt like someone else’s.)
○ Muscle pain (Same as Decadron in the uncertainty here. See future post “From Zero to Excruciating”)
○ Unusual drowsiness (This only happened twice. On Black Friday, I took a Keppra before going out to brunch with Brian. By the time we arrived, I was so drowsy, he had three eyes.)

So if you are the caregiver/significant other of a craniotomate who’s been prescribed either of these medications, you have my sympathies. Some of us may win the biochemical lottery and get a relatively easy list of side effects, but others of us may be as unpredictable as a rabid badger juggling flaming chainsaws. (Ooh! That could be a good monster for Bears vs. Babies!)