Taking Medication: 16 Ways to Become a Smart Self-Advocate
When we walk into the doctor’s office, for many of us, the scenario looks like this: We list off our symptoms, the doctor asks a few questions, writes out a prescription and we go on our way.
From her work in primary care settings, Risa Weisberg, Ph.D, assistant professor (research) and co-director of the Brown University Program for Anxiety Research at Alpert Medical School, has seen “firsthand how a great many patients accept a prescription from their provider without asking many questions about it, or often, without even knowing for what symptoms/disorder it is being prescribed.”
Such a scenario can stall or sabotage your treatment. Confused, you’re likely left with tons of questions, unaware of what you’re taking and how it’s supposed to help. You may be feeling helpless — a spectator in your own recovery — and hopeless, if the medication doesn’t seem to work or has bad side effects. Your doctor likely is clueless about your real concerns, not having all the information to guide his or her decision-making process.
But you don’t have to feel like a powerless bystander, on the outskirts of your own treatment. In order to become a sharp self-advocate, you just need some information. Here’s some hints for for taking medication safely and effectively. At the end, you’ll also find a basic glossary of common medication-related terms.
1. Haven’t picked a physician yet? Do your homework and conduct an interview. Before you decide on a doctor, whether it’s a primary care physician or a psychiatrist, ask some questions about qualifications and see if he or she is a good fit for you. Questions to get you started: Where did you go to school and do your training? Do you specialize in a specific mental illness? Do you have hospital privileges? Here’s a list of excellent questions to ask a psychiatrist during and after your first appointment. They focus on bipolar disorder, but you can easily adapt them to any disorder.
2. Ask the doctor about your diagnosis. You have the right to know precisely what you’re diagnosed with and how the doctor came to that conclusion. Making a diagnosis doesn’t happen in a 5-minute interview. You want to make sure that the doctor conducted a thorough evaluation. Did the doctor get your medical and mental health history? Did you complete a standardized test? Did the doctor ask about your symptoms and recent experiences?
3. Seek out psychotherapy. Medication isn’t your only option. Depending on the disorder, you may only need psychotherapy or you may take medication and see a therapist. Psychotherapy provides lasting benefits, whereas a medication’s effects stop as soon as you stop taking it. Cognitive-behavioral therapy effectively treats depression, anxiety disorders and bipolar disorder. To find a therapist, you can ask your doctor for a recommendation, browse the Web or check with universities and medical schools. Be sure the therapist specializes in your mental illness. For advice on finding a good therapist, check out this eBook.
Some Web sources for finding a therapist:
- Psych Central’s therapist finder
- The Association for Behavioral and Cognitive Therapy for CBT-trained therapists
- Children and Adults with Attention Deficit/Hyperactivity Disorder
- Anxiety Disorders Association of America
- National Eating Disorder Association
4. Before taking the medication, ask specifics. Peter Roy-Byrne, M.D., professor and chief of psychiatry at the University of Washington at Harborview Medical Center, and Michael R. Liebowitz, M.D., professor of clinical psychiatry at Columbia University and managing director of The Medical Research Network, suggest asking:
- How will I know if this medication is working?
- What are the side effects, and what do I do if I experience them?
- When will the medication start to work?
- How long will I have to take it?
- If I take it for X amount of time, what’s the likelihood of reducing symptoms?
- What are the dose requirements?
- Will you be monitoring me throughout the course of this medication?
- When will you talk to me next?
The Agency for Healthcare Research and Quality has a basic handout with more questions. There is a thorough list if your child is taking medication, which you can easily revise for your situation.
5. Unsure about medication? Explore why. Are you on the fence because of potential side effects, the stigma of having a disorder or taking medication, a bad past experience, fears of addiction or uncertainty about the validity of your diagnosis? Talk to the doctor about your concerns before making the decision to take or refuse the medication.
6. Research your medication. Before having your prescription filled, look for information about your medication and its side effects.
7. Pose questions to your pharmacist. Along with your physician, the pharmacist is a great resource for information, so ask away!
8. Remember that you and your doctor are a “health care team,” Weisberg said. Together, you collaborate on your treatment. And as such, you should feel comfortable asking questions and raising concerns, all the while respecting your physician’s expertise. If you feel like your doctor isn’t listening or brushes you off, find a professional who will be part of your team. It’s what doctors are there for.
9. Keep a list of your medication. Include the name of your medication and the dose and always bring your list to appointments, said Holly Swartz, M.D., associate professor of psychiatry at the University of Pittsburgh School of Medicine and Western Psychiatric Institute and Clinic in Pittsburgh. Your list is especially essential if you’re seeing both an internist and a psychiatrist, she added.
10. Keep another list of medication you stopped taking. Include the reasons you stopped taking the medication, Dr. Swartz said. This gives your doctor the whole picture and helps guide decisions about what medications will be safe and effective for you.
11. Purchase a pill box. A pill box can be helpful if you’re taking many medications or multiple doses, said Dr. Swartz, who suggests counting out your pills in the beginning of each week.
12. Take your medication as prescribed. This may seem like a no-brainer, but many individuals skip a dose or stop taking medication altogether, because they left their medication at home, forgot to get a refill, couldn’t stand the side effects or felt better. Not taking your medication can make symptoms return.
“If you stop an anxiety drug, the anxiety may come back, and with the passage of time, it could be worse than before,” Dr. Roy-Byrne said. Or you may experience “discontinuation syndrome,” what many people think of as withdrawal. Symptoms vary for each individual, but may include insomnia, dizziness, anxiety, blurred vision and hallucinations.
Relapse is another concern. Individuals with bipolar disorder are at higher risk for relapse if they stop taking medication, Dr. Swartz said.
13. Monitor your progress. Some doctors will give you tools, such as a standardized scale to measure your progress. If they don’t, start documenting it on your own and bring the materials to every appointment. For instance, for bipolar disorder, Melvin McInnis, M.D., psychiatrist and professor of mood disorders with the department of psychiatry and the Depression Center at the University of Michigan, suggests keeping a journal with your mood, quality of sleep and energy levels and finding a self-report scale to track your symptoms. If you can’t find a good scale, create a daily log of symptoms your medication is supposed to reduce and evaluate them from 1-10. And keep a record of side effects. Dr. Roy-Byrne also has his patients closely monitor their symptoms before they start taking medication. This way, it’s easier to pinpoint the changes the medication has caused, not your natural symptoms.
14. Give your doctor feedback. Let your doctor know how you’re feeling, particularly if you’re experiencing bothersome side effects. Your doctor can help minimize side effects by adjusting the dose, changing how you take the medication or prescribing a different drug altogether. Have trouble sleeping? Your doctor may suggest taking medication in the morning. Not communicating with your doctor can compromise treatment. “If you have secretly stopped one medication, your doctor may start telling you to increase another medication without understanding that your new symptoms are actually unrecognized withdrawal symptoms from stopping the other medication,” Dr. Swartz said. When tapering off medication, if something doesn’t feel right, talk to your doctor, who can then make the proper adjustments.
15. Understand that it’s a process. Finding the right medication may “require a process of trial and error and refinement,” Dr. Swartz said. “Try not to feel discouraged if the medications do not work right away or cause side effects that require serial medication adjustments.” This is why giving feedback to your doctor and tracking your progress is key.
16. Disclose any supplements, vitamins or medication you’re taking. Any of these substances can interact with your medication — some with dangerous results.
Here’s a quick look at common terms you may run across:
Half-life: The time it takes for half of the medication to leave the body. For instance, Paxil has a short half-life, leaving the body in about a day, whereas Prozac, which has a longer half-life, takes a week.
Black-box warning: The most serious type of label applied to prescription drugs by the Food and Drug Administration (FDA). For instance, the FDA requires that all antidepressants carry a black-box warning about the potential increased risk of suicidal symptoms in 18- to 24-year-olds.
Side effects: Adverse effects caused by medication.
Discontinuation syndrome: One or more side effects that occurs when individuals stop taking medication abruptly, including dizziness, headache, insomnia and numbness. For more on discontinuation syndrome, see here and here.
Antidepressants: A group of medications used to treat mood disorders, including depression, by acting on neurotransmitters in the brain – namely dopamine, serotonin and norepinephrine. The following are types of antidepressants: selective serotonin reuptake inhibitors (SSRIs); serotonin and norepinephrine reuptake inhibitors (SNRIs); tricyclic antidepressants (TCAs); and monoamine oxidase inhibitors (MAOIs).
Antipsychotics (or neuroleptics): Developed in the mid-1950s, these medications are known as traditional or typical antipsychotics. They treat severe mental disorders such as schizophrenia by reducing symptoms such as hallucinations and delusions. Antipsychotics have a risk of extrapyramidal side effects, including tremors, slurred speech, akathisia (shakiness and fidgeting) and tardive dyskinesia (involuntary movements). Other medications, including Prozac, Zoloft and Lithium, also may cause tardive dyskinesia.
Atypical (or “second generation”) antipsychotics: Developed in the 1990s, this group of medications also treats psychotic symptoms. It’s the first line of treatment for schizophrenia and may be prescribed to treat the manic phase of bipolar disorder. Overall, tardive dyskinesia and extrapyramidal symptoms occur less often with atypical antipsychotics. However, recent studies suggest that Abilify may cause akathisia.
Atypical antipsychotics also may raise the risk of obesity, diabetes and high cholesterol. Clozapine is an effective atypical antipsychotic, but is usually prescribed when other medications don’t work, because of its ability to reduce white blood cells (which fight infection) in some people.
Monoamine oxidase inhibitors (MAOIs): Used in the 1950s, MAOIs were the first antidepressants on the market. They work by metabolizing dopamine, norepinephrine and serotonin to help boost mood. These medications typically are prescribed when other antidepressants haven’t worked, because they require stringent dietary restrictions.
Selective Serotonin Reuptake Inhibitors (SSRIs): This group of newer antidepressants acts on the neurotransmitter serotonin by blocking its reuptake (reabsorption). It’s believed that higher levels of serotonin in the brain will help mood. The most famous SSRI is Prozac, which was introduced in 1987. Common side effects include sexual problems, trouble sleeping, nausea, dizziness and weight gain. Mayo Clinic offers advice on reducing SSRI side effects.
Serotonin norepinephrine reuptake inhibitors (SNRIs): A class of medications that inhibits the reuptake of both serotonin and norepinephrine. Common side effects resemble those for SNRIs but typically cause fewer sexual problems. Effexor (venlafaxine) can cause high blood pressure at high doses, so it’s important to have your blood pressure checked regularly.
Tricyclic antidepressants (TCAs): An older group of medications, TCAs are prescribed when newer antidepressants are ineffective to treat depression. They’re also prescribed for bipolar disorder. TCAs either work on serotonin, norepinephrine or both (called “dual action”). They may not be safe for individuals with heart disease and may be fatal in overdose.
Mood stabilizers: These medications help to regulate mood and are prescribed for bipolar disorder and borderline personality disorder. Examples include lithium and anti-seizure medications, such as Depakote, Tegretol and Lamictal. Side effects include weight gain and nausea.
Benzodiazepines: A group of fast-acting medications, including Xanax, Ativan and Valium, that treats anxiety, panic disorder, insomnia and sometimes bipolar disorder. Benzodiazepines act on the gamma-aminobutyric (GABA) receptors, inducing relaxation. When used for a long time or in high doses, benzodiazepines may cause physical dependence. Stopping abruptly can trigger severe symptoms, including anxiety, irritability, difficulty sleeping, muscle cramps and confusion.
Stimulant medication: Medications used to treat attention deficit hyperactivity disorder (ADHD), including methylphenidates (Ritalin) and amphetamines (Adderall). Stimulant medications increase dopamine levels, affecting the core symptoms of ADHD: inattention, impulsivity and hyperactivity. Side effects include reduced appetite and sleeping problems, but these tend to go away after several weeks or after adjusting the dose.
Serotonin: Chemical in the brain that regulates mood, sleep, sex drive, appetite, memory and learning, body temperature and behavior.
Dopamine: Neurotransmitter that controls pleasure-seeking, emotion, attention and movement.
Norepinephrine: Neurotransmitter that regulates blood pressure, heart rate and respiration.
Psych Central’s comprehensive medication guide
Guidelines for Anxiety Medication Use (can be applied to other illnesses)
Medication guide from the National Institute of Mental Health
Podcast from ADDA on medication for anxiety disorders with Dr. Roy-Byrne
Tartakovsky, M. (2016). Taking Medication: 16 Ways to Become a Smart Self-Advocate. Psych Central. Retrieved on February 20, 2017, from https://psychcentral.com/lib/taking-medication-16-ways-to-become-a-smart-self-advocate/