Bipolar 2 From Inside and Out

Posts tagged ‘tardive dyskinesia’

Side Effects: TD and Stevens-Johnson

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.

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Mental Health

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The Worst Side Effect of Psychotropic Drugs

I’ll admit that I’ve had a lot of side effects from the various psych meds I’ve taken over the years, and some of them were bad enough to make me ask for something different. There’s been insomnia, sleeping too much, twitchiness, vivid nightmares, and others. But as far as I can see, there are only two side effects that would make me completely quit taking a prescribed medication, even before I could ask my doctor about it.

The first is Stevens-Johnson Syndrome. It’s what they mean when they say on TV commercials, “a fatal rash may occur” (I didn’t even know rashes could be fatal). Indeed, your skin starts to come off. I think it’s always a bad sign when your insides suddenly become your outsides, like in that Simpsons episode where everyone turned inside out. Among the medications that can cause SJS are anticonvulsants, antipsychotics, and other psychotropic drugs, at least two of which I take daily. When he prescribed them, my psychiatrist told me to stop taking the meds instantly if I got a rash around my mouth and nose, and go to the emergency room. It’s that serious.

Apparently, the anti-smoking drug Chantix and maybe some others can also cause SJS, which I guessed from the “fatal rash” warnings on the commercials and later confirmed. I idly wonder if the rate of Stevens-Johnson has increased now that more of these drugs are being used.

The other side effect that I truly fear is tardive dyskinesia. Tardive dyskinesia means involuntary, repeated muscle movements, which can affect the face (tics, twitches, grimaces) and other parts of the body (legs, arms, torso, and fingers). Think John Nash in A Beautiful Mind. These movements appear after taking medications such as antipsychotics. Worst of all, the movements may become permanent and a number of people are disabled because of them. There are now medications that treat tardive dyskinesia, but I still wouldn’t want to have it.

Yet, what is the most feared, the most despised side effect of psychotropic medications?

Weight gain.

I see countless comments in online support groups asking about weight gain on particular medications and posts that say such-and-such a drug caused weight gain. A number of people post that they will not take these medications, or will stop taking them, because they can cause weight gain.

Admittedly, weight gain is not often a good thing. It can certainly lead to other health problems. But my point is that many people are more concerned about their appearance than their mental health. 

I’ve struggled with my weight too over the years, and I have written about it (https://wp.me/p4e9Hv-7o). But I’ve struggled more with my mental health, which could kill me just as surely as obesity.

There is vast stigma in our society surrounding fat people. That’s undeniable. Fat people are stereotyped as lazy, sloppy, unattractive, unhealthy, and more. Despite recent body-positivity messages and a few clothing commercials that now feature more plus-size women (I haven’t seen plus-size men), this stigma continues virtually unabated.

Of course, there is stigma around mental illness, too. Those with mental disorders are stereotyped as out of control, violent, dangerous, suicidal, and a burden on society. I can see that people are reluctant to add the two stigmas together.

But honestly, is weight gain so very bad compared with the chance to alleviate the misery and suffering that accompany serious mental illness (SMI)? Personally, I prefer to weigh more and not live my life in despair and hopelessness.

Some of the medications I’m on can cause weight gain. Some of them can cause Stevens-Johnson Syndrome or tardive dyskinesia. Fortunately, weight gain is the only side effect I’ve had, and I can live with that. Stevens-Johnson is potentially deadly and tardive dyskinesia is potentially permanent. There are things I can do about my weight if it really concerns me, or I can chalk it up to a side effect of being content, stable, and productive.

Frankly, of the possible side effects, I fear weight gain the least.

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Mental Health

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