Bipolar 2 From Inside and Out

Posts tagged ‘tardive dyskinesia’

Advances in Schizophrenia Treatment

Schizophrenia is one of the most problematic and least tractable of the Serious Mental Illnesses (SMI). Recently, though, there have been advancements in treatment in terms of medications, therapy, and even virtual reality. Let’s take a look at what’s happening.

Medications

Medications have been the traditional way to treat schizophrenia. In the 1970s, there were drugs such as fluphenazine, chlorpromazine, and clozapine, the first atypical antipsychotic. Among the drawbacks were movement disorders such as akathisia, Parkinsonism, and tardive dyskinesia. Many people stopped taking them because they couldn’t handle the side effects. They were also noted for their sedative effects, and were primarily effective for positive symptoms such as hallucinations and delusions rather than negative ones such as flat affect. But medications weren’t the only possibilities. There were also insulin comas, the much-maligned ECT, and the thoroughly abhorrent frontal lobotomy.

In recent years, there have been advancements in medications for schizophrenia. In 2024, for example, the FDA approved a drug called Cobenfy. It combines two other medications, xanomeline and trospium chloride. Apparently, it reduces psychosis and delusions in schizophrenia without many of the side effects like unwanted movements and weight gain. On the other hand, xanomeline has its own side effects, including diarrhea, nausea, vomiting, and increased heart rate and blood pressure, so there’s that. (It’s also used to decrease symptoms in Alzheimer’s patients. Another new drug, KarXT, which is still experimental, is another combination drug that shows promise. Like Cobenfy, it’s supposed to reduce both psychosis and side effects.

Therapies

In the 70’s, effective therapies for schizophrenia were not really available. Psychoanalysis and family therapy were tried, largely to no avail. (The famous book I Never Promised You a Rose Garden epitomized the psychoanalytical approach, misleading many.) They missed the fact that schizophrenia is a serious brain illness, not really amenable to talk therapies.

Still, some psychosocial therapies are now in use. Cognitive remediation is said to show benefits for social and vocational functioning. Another method, called “Errorless learning,” which focuses on rehabilitation, also targets social and work skills. And Integrated psychological therapy is likewise suggested for improving social skills. None of them applies to the more severe cases of schizophrenia, but can be helpful for those who experience milder symptoms or are fairly well controlled by medication.

Virtual Reality

Virtual or augmented reality devices have also been used to help schizophrenic patients learn coping skills. In particular, they are said to be helpful in transferring these skills from a virtual environment to daily life. It’s also been suggested that such alternative realities can be used for research to assess patients’ reactions to specific environments. Computer-animated humanoid agents are also being investigated for use in encouraging medication compliance. An analysis by Chivilgina, Elger, and Jotterand says that these technologies “pose more questions than answers,” however, and to “to establish safe environments, further examination is needed.”

Treatments for Tardive Dyskinesia

You can’t talk about treatments for schizophrenia without talking about treatments for TD. Along with sedation, it’s one of the side effects that frequently causes patients to stop taking their medication. It’s also one of the more disabling side effects, as TD movements can vary from minor yet noticeable to extreme and debilitating. Unfortunately, many of the treatments for TD have a significant side effects: abnormal movements. So, you get a drug that is supposed to treat abnormal movements—and the result can be abnormal movements.

Guidelines from the American Academy of Neurology say that drug treatments for TD include clonazepam, valbenazine (Ingrezza), deutetrabenazine (Austedo), and clonazepam. Among other treatments for TD, clozapine, vitamin E, levodopa, benzodiazepines, botulinum toxin, reserpine, tetrabenazine, propranolol, and gingko biloba have been tried, as well as less common substances used in Chinese medicine. And there are off label uses of drugs usually prescribed for other conditions. For particularly intractable cases, deep brain stimulation can be tried. If this sounds kind of hit or miss, it is. I would hate to be a patient who had to try each of these therapies in hopes of finding one that works for me.

Still, the outlook for schizophrenic patients seems to be improving, and increasingly researched. As with most psychiatric medications, the trick is finding treatments whose side effects aren’t worse than the disorder they’re prescribed for.

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It’s Not That Simple

I’ve bitched before about the ads on TV for psychotropic drugs, and I’m about to do it again. The first ones that caught my eye were the ones that compared depression to holding up a smiley face mask in front of their face, while the person’s actual face exhibited sadness.

But it’s not that simple. Smiling depression is a thing, of course, but treating it is not as simple as taking away the mask and replacing it with a real smile. Psychotropics don’t work that way. Of course, since the ads are for psychotropics that are supposed to work quickly (though not as quickly as the ads imply), we can’t expect them to mention the years of struggle and therapy that go into improving the condition.

The next kind of commercials are a tiny bit better. They mention actual symptoms of depression: sadness, loss of focus, lack of interest in fun things, or an inability to do chores.

But it’s not that simple. Personally, I don’t think it’s a tragedy if the barista has to wait two seconds while I remember whether I want oat milk or if the family has to put away the laundry. These are obvious but probably not major symptoms of depression or symptoms of major depression. What about not getting out of bed for three days or not showering for a week or more? Crying all day about nothing or everything? Thoughts of self-harm or suicide? They just don’t make for good 60-second television. The long, lingering effects of depression are glossed over or ignored.

There are also ads for treatments for bipolar disorder, both types I and II. Most of them concentrate on the mania or hypomania side of the problem. Most of the ads use metaphors—climbing a tower of cards or going from darkness to light. Overspending is the issue most illustrated in regard to bipolar if you don’t count all the depression ads. I recall one that showed a woman who had bought a lot of expensive cameras and came to realize that she had overdone it.

But it’s not that simple. Bipolar disorder is a complex disorder that metaphors just can’t capture. Like depression, the ads concentrate on only one symptom, and don’t do a good job of creating those metaphors. (I’m just glad they don’t use a metaphor of someone on a swing.) I realize that it’s not likely that ads on TV will address hypersexuality, but what about the pressured speech, euphoria, irritability, bad decisions, and reckless behavior that go with mania?

Schizophrenia is probably the worst. The ads show not the disorder, but the lack of it—women saying, “I’m glad I don’t hear voices anymore” and “I’m glad I don’t still think everyone is looking at me” or men playing guitar to illustrate how “normal” the drugs make them.

But it’s not as simple as that. I admit that it’s not possible to portray some of the more frightening aspects of schizophrenia, which would probably only add to the stigma surrounding schizophrenia. But making it seem like one pill will cure it isn’t reasonable or accurate.

Then there’s tardive dyskinesia, also called TD. The ads do a competent job of giving examples of uncontrolled movements and how they interfere with a person’s life. The drug being advertised may indeed help with those.

But it’s not that simple. If you read the fine print at the bottom of the screen or listen to the rapid-paced list of possible side effects, you’ll notice that one of them is uncontrolled movements. WTAF? It gets rid of uncontrolled movements but may cause uncontrolled movements? Why take it and take the chance?

The ads I may hate the most are the ones that emphasize family. We see a woman folding the family’s laundry, grandparents romping with the kids at a park, and other idyllic scenes.

But it’s not that simple. Treating a mental illness is not something you do for the benefit of other people. It’s something you do for yourself, even if you don’t have a nuclear family or grandchildren or a large circle of friends. Granted, the people around you may be happy that you’ve found a therapy that works (and the ads almost never show a combination of drug therapy and talk therapy). That’s a side effect—a good one, but still not the intended effect of the psychotropic drug.

I attribute this primarily to the lack of inventiveness and understanding shown by people at the advertising agencies, as well as the tiptoeing around the whole subject of SMI. But what happens is that the viewers get an unrealistic view of both the disorders themselves and what the drugs can do to relieve them. It’s not simple, and the ads simply don’t reflect that.

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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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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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