A new study out of St. Vincent’s Hospital in Melbourne, Australia found a correlation between increased Sudden Unexpected Death due to Epilepsy (aka SUDEP) rates and low medication compliance. SUDEP is when a person with epilepsy dies suddenly and prematurely, and no other reason for death is found. Although it’s the largest cause of death among people with epilepsy, doctors still don’t know exactly what causes SUDEP. Research points to problems with breathing, heart rhythm, and brain function irregularities that occur during a seizure. Perhaps the “U” in SUDEP should stand for “unexplained.” But practitioners do know that the more seizures a person has, the higher their SUDEP risk. Before I got my seizures under control with brain surgeries, I was always more seizure-prone when I accidentally skipped my medication. I lowered this risk factor by implementing systems and tricks that ensured I rarely missed my meds. Although I’m now seizure-free, I still use these to keep myself on track and would suggest them to anybody who takes medication regularly.
The new St. Vincent’s study corroborates the importance of medication compliance. Researchers observed almost 1,200 patients, of whom 66 died, including 10 SUDEP deaths. The study found that patients with declining, poor, or very poor medication compliance habits had a SUDEP risk eight times higher than those who followed their medication regimens. Given SUDEP’s inexplicability, this new data on practices that might prevent it feels especially important. This month’s blog is a public service announcement on medication compliance tips. I admit, some of my medication management tips are onerous, so the blog’s tone is a bit tongue and cheek. That said, those of us with epilepsy should take medication compliance very seriously, as it could potentially save our lives.
While my medications might keep me healthy, those darn pill dispensers stress me out. Those of us with a chronic condition that requires daily medication know that carefully following one’s prescription regimen is critical to good health. According to a Mayo Clinic study, 70% of adults take prescription meds daily. Even people who do not need regular medication often take vitamins every day. I’ve noticed a direct correlation between my increasing age and supplement numbers, and those annoying pill boxes keep my routine on track. I’ve been taking daily medication for decades, so I’ve got my regimen down to a science. A drug compliance strategy doesn’t necessarily come naturally to everyone, but if you don’t have one, the consequences can be dire, or even fatal. With this in mind, these are my best tips for keeping on track.
I use the seven-day pill organizers, counting out a two weeks’ supply into different colored pill dispensers. The varied colored boxes provide a visual reminder of how soon it is until the next counting day. I keep morning and evening doses in separate boxes for simplicity’s sake. The medication dispensers are aggravating because they are fated nondurable goods. They are so poorly manufactured that they inevitably deteriorate – it’s just a question of how and when. In my experience, first the letters denoting days of week rub off. Eventually the lids break off after repeated use. Which begs the question: Where the pill boxes are critical to so many people’s good health, why haven’t the friggin’ manufacturers figured out how to create a sturdy product?
While I don’t have the power or skills to create this illusive durable invention, I do know how to stay on target with meds and maximize those annoying pill dispensers’ utility. Sticking to your doctor’s suggested prescription plan is a key component of playing an active role in one’s own treatment plan, critical to maximal self-care and patient self-empowerment. Following the plan precisely is critical, as this helps determine whether the medications are effective. I take anti-epilepsy meds and in years past, I typically had a seizure or two when I accidentally skipped a dose. To avoid these medical mishaps, I set a reminder alarm twice daily, and try to pop the pills the moment it goes off. If I’m too busy, I hit “snooze” – multiple times if necessary – until I can knock the pills back.
Another critical suggestion: always count meds out when you’re feeling well-rested, or you might wind up with the wrong pills at the wrong time. Once when I didn’t follow this advice, I wound up taking another household member’s anti-depressant in place of my birth control pill for two weeks, as they looked identical. This resulted in several days of excessive sleepiness, followed by a month-long menstrual period. While that was no picnic, looking back, I feel lucky the consequences were relatively minor.
I’m also a typical tree-hugging environmentalist, trying to do what I can to reuse and recycle. So, when my pill dispensers wear out, I don’t immediately purchase new ones. This photo exemplifies the dispensers’ not-so-slow deterioration:
The top pillbox is brand spanking new. The middle one is a few months old. The bottom one is about eight months old. The letters have worn off like the fading paint on a house and it’s impossible to tell which box goes with what day. When the dispensers get to this point, I admit it’s tempting to go to a drugstore or hop online and order new ones. But other than the worn-away letters, the bottom dispenser is still perfectly functional. My environmentally conscientious thrifty self cannot throw this away. In addition to having the med compliance down to a science, I’ve mastered the art of pillbox restoration. With a couple of tweaks, this bottom dispenser is still usable. Some might call me obsessive, but I know I’m not the only one facing this problem. In addition to a Sharpie marker, here are the tools required to solve it.
Packing tape and sticky dots/notes: Use a Sharpie to write the letters representing the days of the week on the colored sticky dots or cut up sticky notes. Coordinate the colors to match your mood. You must use small pieces of packing tape to secure the colorful letters onto the pill dispenser, or else they will fall off. When you’re finished, the pillbox will look something like the below. A bit do-it-yourself but quite colorful, and definitely usable.
Self-sticking name tags plus scissors
Here you get to creatively repurpose those introductory name tags you have left over from that pre-pandemic large gathering you hosted. Again, this requires a Sharpie marker, to write the letters corresponding to the day of the week. Be sure to write the letters and cut the label into small squares, while it’s still stuck to the waxy backing. The glue on these tags is so strong, they don’t even require an additional layer of packing tape. Here’s a sample finished product. Again, a bit DIY, and the confetti-style stars are incongruous, but the pillbox works perfectly. I am my own pillbox hero.
These craftsy solutions might earn me a second career on Etsy, and will buy several additional months’ use, but nothing lasts forever. As you can see below, this purple pill dispenser is on its last legs: The Saturday compartment’s lid is no longer attached on the backside. In theory, one could use heavy-duty duct tape as a hinge, to keep from becoming unhinged, but this is the point at which even I quit the stopgap measures. I replaced this purple pillbox with a new one. But I can take pride in the fact that I’ve maximized its use.
I count my pills on alternate Mondays, so if I’m going away for the weekend, I always have them ready to pack in the suitcase. Below is an image of my biweekly Monday night coffee table creation: My DIY-spiffed-up pill boxes, ready to go for the next two weeks. Yay!