Ever have a hard time remembering to take your meds regularly? Now try tallying up all the psychiatric meds you’ve ever taken, their dosages and side effects. It’s harder than you might assume – especially as time goes on.
When I was interviewing my peers for my book about growing up taking psychiatric meds, I started with what I thought was a basic question: Can you give me your medication history – which meds you’ve taken in the past, and for how long?
I was shocked at how many people couldn’t answer the question with any confidence. They’d begun taking medications as children and didn’t know the names. Or they’d simply cycled through so many drugs that they couldn’t remember them all.
The more research I did, the more I realized that having trouble remembering your psychiatric medication history was, to a great extent, the nature of the beast.
Too Many Meds, Faulty Memories
That’s a major reason that researchers who study people’s adherence to medication – how closely they follow the doctor’s directions about how and when to take the drugs – don’t like to rely on patient self-reports. People’s memories simply aren’t very reliable (they may also be motivated to claim they took the medications more regularly than they actually did).
When it comes to recalling drugs you’ve taken years ago, the risks of memory lapses are even greater.
Trial and Error and the “Medication Merry-Go-Round”
The situation is complicated by the fact that many people with emotional or behavioral problems cycle through many drugs, searching for one that relieves symptoms without causing intolerable side effects.
That’s true of medications for other conditions, too. However, more so than in other medical specialties, doctors rely on trial and error to determine which psychiatric medication will work for a given patient. They make their best guess based on their clinical experience, the patient’s symptoms, professional guidelines and which drugs have been approved by the FDA for which conditions.
Sometimes patients luck out. A drug relieves their symptoms and they’re able to stop taking it after a few months or a few years. That’s the end of their story when it comes to psychotropic medications.
But very often, the initial drug doesn’t relieve symptoms, or it causes intolerable side effects, or it works for a while, then peters out. As clinicians often point out, psychiatric medications are treatments, not cures.
To complicate matters, patients commonly decide, for any number of reasons, to quit taking their medication. Some stop for good, but others resume the same drug, or try a new one.
As you can see, psychiatric medication histories get awfully complicated awfully quickly.
Technology to the Rescue?
In theory, we now have websites and apps that can help us track medication use over time. Many of the people I interviewed for my book had been member of the website PatientsLikeMe, which allows people to enter data about their symptoms and treatments. When they couldn’t remember which meds they’d taken when, they consulted their profile on the site.
I myself recently began using a smartphone app, MyMedList, put out by the National Library of Medicine, that lets you enter all current and past medications, dosages, and when you started and stopped taking each drug.
But even well-meaning people easily get disorganized when it comes to keeping track of their medication use over time. People enter some information in a notebook or a Word document on their computer, then start using a website that they abandon, then try out one app and then another. Medication information easily gets lost along the way.
And relying on your doctor’s medical records is more complex than it seems – especially if you take medication for many years.
Young people are especially likely to undergo multiple life transitions -including moving away from home, switching to adult doctors, and going from their parents’ health insurance to their own – that can make piecing together their medication histories a near-herculean task. And even older people switch clinicians frequently, because of changes to their insurance, because they stop treatment for a while, or because they’re just not satisfied with the prescribing doctor.
Amid all these transitions and life stressors, making sure medical records are transferred to each new doctor often isn’t a top priority. Electronic medical records, once universally adopted, should make the sharing of information among doctors much easier.
But in the meantime, with only about half of doctors using electronic medical records, and many employing incompatible or substandard systems, many patients – both young and old – find it easier just to report to each new doctor what medication they were last taking and rattle off the top of their head other drugs they remembering having taken.
For some people, this kind of approach works out fine. But others sacrifice their health, or waste time and money, when they can’t remember why they stopped taking a particular drug, can’t recall what dosage of a drug they took previously was effective for them, or what kind of bad reaction they had to another medication.
Prescribing psychiatric medication may be a process of trial and error, but it’s one that goes much more smoothly when doctors have a medication history to draw on.
How do you keep track of your medications, or your child’s meds? Or do you just not bother, and hope your memory will serve you well?