Bipolar Me

We all hate side effects. They go from bad to worse to horrible. (A popular meme says that people wish they had side effects like multiple orgasms. Alas, no one’s invented a drug with that side effect yet.)

In my journey through the process of settling on reasonably effective medications, I’ve experienced a number of side effects, including violent nightmares, paranoia, and feeling numb all over. I switched to other meds, but really, those weren’t so bad.

Two of the worst side effects are Tardive Dyskinesia (TD) and Stevens-Johnson Syndrome.

TD, according to Penn Medicine, is “stereotypical involuntary movements of the tongue, neck, and facial muscles, truncal musculature, and limbs.” These movements “can range from slight tremor to uncontrollable movement of the entire body,” explains NIH. Basically, these movements often consist of facial movements like grimacing, sucking, sticking out the tongue, rapid blinking, and chewing motions. The bodily movements can include ones of the arms, legs, and pelvis, from tapping your feet or fingers to rocking the pelvis, swaying, and uncontrolled movements while walking.” (One description of it was “waddling.”)

The medications that can bring on TD include antipsychotics such as Haldol, Risperdal, Abilify, and Seroquel; antidepressants including (but not limited to) Sinequan, Elavil, and Prozac; antiseizure medications such as Lamictal and Dilantin; and, of course, lithium, particularly if taken along with other medications. (I’m currently taking meds in three of these categories and have in the past taken others, though never lithium. I’ve never experienced TD.)

You may have seen commercials on TV with information on treatments for TD. Although they’re designed to prevent a particularly troubling side-effect, they have side effects of their own. A list of these includes depression, suicidal thoughts, mood symptoms, heart abnormalities, allergic reactions, dizziness, weight gain, loss of balance or falls, stomach pains, frequent urination, and constipation. Oh, and there’s one more—uncontrollable body movements that may become permanent. That’s right. The anti-TD meds can cause exactly the symptom they’re supposed to alleviate. Sounds like a good deal to me. Admittedly, the incidence of these side effects is likely less than the incidence of TD from lithium, but would you be willing to roll the dice? Maybe you would, if there’s a chance it could protect you from TD. It’s up to the individual. Me? I’m not sure.

Another undesirable side effect is Stevens-Johnson Syndrome. It’s a condition that at first causes a skin rash that isn’t really itchy and often first appears around the nose and mouth or other mucous membranes. Unless you get immediate treatment, the rash can spread and turn into blisters and painful sores. It can develop into toxic epidermal necrolysis (TEN), a condition in which skin all over the body peels off. It’s potentially fatal. In 80% of cases, a psychotropic medication is the cause. (My psychiatrist prescribed me an antipsychotic particularly associated with the disorder and told me, “Don’t look it up on the internet. It’s gross.” Of course, I did look it up, and he was right. It is gross.)

I’ve had my bouts with side effects over the years. In every case, my doctor listened to me, weaned me off the drug that was causing the problem and titrated me up on a different one until we finally found a regimen that works. I’m fortunate that none of the side effects have been TD, Stevens-Johnson, or TEN. And I’m profoundly thankful.

The only advice I can give is to be mindful of the potential side effects of the drugs you take. On TV commercials, they run through them so rapidly and print them in such small type that they’re difficult to notice. But they matter. It’s your physical health as well as your mental health that’s at stake. If that means you need to do research on the internet, do it. I know there’s a danger that you’ll expect the side effects you read about but, in my opinion, it’s a trade-off worth making, especially with all the new drugs on the market and the potential severity of the side effects you’re facing.