Editorial Note: This post by DG follows up on last week’s Robbie’s Tourette Syndrome Story and continues a series begun a year ago looking at the effects of aripiprazole on Tourette Syndrome Abilify, Tourette Syndrome and Me. As mentioned last week, the key point is not just drug induced adverse effects but the ability of someone who has the disorder and takes the treatment to be more expert on what is going on than the so-called experts.
The video can be seen on YouTube.
Her face shows that something emotional is going on as she screams, and her uncontrollable emotions throughout the video suggest emotional lability. She looks as if she is screaming in pain, etc., not as if her vocal cords are experiencing uncontrollable vocalizations. If she had a regular screaming vocal tic, she would not be putting any emotions into it, since the screaming would be happening randomly for no reason. It does not have the semi-voluntary look of tics whatsoever, as it looks completely in her mind.
Since taking medication, I have developed forms of mental instability where I become so upset that I scream at the top of my lungs, and this is often due to the emotional lability that I also developed as a side effect. It is not a tic, but uncontrollable behaviors with intense emotions, instead. This appears exactly like how Sarah’s behavior looks in this video.
It should be common sense how making obscene gestures is not a neurological movement disorder, at least not in the normal sense of the word. I realize that there really is such thing as these types of tics, since I myself developed a sticking out one’s middle finger tic from medication, but they are not part of TS, since TS tics are always meaningless bodily movements, not human actions. Believing that Coprolalia tics are part of TS was one thing, since at least they maintain more of the integrity of what a tic is, but Copropraxia tics look so much like human behavior that it should be more obvious that these are not TS tics.
Since her finger movement does not look involuntary whatsoever, it might not even be a Copropraxia tic at all, but rather a mental illness, because regular Copropraxia at least looks semi-voluntary. It looks as if she may actually be flipping off the camera, which is another clue that this is not a TS tic. TS tics are never directed at someone, because this would make the uncontrollable movement purposeful, when TS tics are always purposeless. Since taking medication, I have experienced many new tics that have meaning, such as a “rolling my eyes at the voices in my head” tic, which is a regular eye rolling tic that has been given meaning through an extra mental illness aspect added on to it.
Her jumping looks too much like human behavior to be a TS tic. One can see that she is making such a conscious effort to perform the movement that it seems to have completely lost the semi-voluntary look of tics, and it instead looks more like self-exhausting behavior. Tics happen so quickly that they do not involve too conscious of an effort to perform, and are sometimes even completely subconscious. I have noticed how since taking medication, so many of my tics require such a greater conscious effort to perform than they ever did before, making them even more distracting than they should be. Despite all this, medication did give me many tics that one would not think would be possible for a movement disorder because they totally go against the nature of tics.
For example, I have experienced tardive tics in the form of doing pushups on the ground. I am in tune with my body and can feel that these symptoms feel exactly the same as how a regular tic would, so I know that it really is a tic, even though it does not make any sense how it could be one. Because of this, her jumping may very well be a tic, but definitely not a TS one, because it is too bizarre to be a regular neurological movement disorder.
The fact alone that I had to write a long phrase in quotes to try to describe this tic (versus the simple phrases normally used, such as an eye blinking tic) should tell us something about how bizarre and complex this symptom is, and how questionable it is that this is a movement disorder. As with many of Sarah’s other tics, they look more like human behavior, and also involve too conscious of an effort to perform than TS tics would. The kinds of injuries resulting from this tic are also a clue that this is not a TS tic. When would having a tic make someone bleed with open wounds all over their body?
With rare exceptions, this not being one of them, TS tics can only result in injuries that are internal not external. Some types of internal bleeding, such as a vocal cord hemorrhage from vocal tics, might be possible with a really severe case of TS, but this is her skin bleeding externally. A TS tic could never make one do something that could cause external injuries, because TS tics are simply repetitive bodily movements. The fact that the ground is involved with her tic may actually be part of the symptom itself, as I have experienced these kinds of tics myself. Since taking medication, I now have certain tics where the room becomes part of the tic.
For example, I have “body shaking in a certain room” tics, where I am forced to tic in a certain room that the tic’s urge tells me to, because being in that room is actually part of the tic, as if “being in a certain room” could be a movement disorder. If it was a different room, then it would be a different tic. The mental illness aspect to the tic makes me tic in a way that is partially purposeful since I have to think in the terms of which room I am in, as opposed to simply letting out a meaningless movement, the way TS tics are supposed to be.
The fact that she cannot move to a safer place to fall and has to jump first to make the fall even harder, combined with the bleeding external injuries that result suggests that self-injurious behavior may be involved. This “tic” is basically dangerous behavior that could seriously hurt oneself. Since she probably has no desire to hurt herself, it may not fully match the definition of self-injurious behavior either. That is why there is good reason to believe that this symptom may very well be some type of tic hybrid caused by her medication.
It is important to note that head banging is not recognized as being a symptom of TS, as it is commonly associated with other disorders, such as self-injurious behavior, instead. The red bruises on her face are so severe that it looks as if someone has brutally beaten her. Who would look at those images of her face that look like a victim from a crime scene and think that they came from tics?
It is important to note that no matter how severe of injuries result from the tics, repetitive strain injuries are the only type of injury that a TS tic could ever result in (i.e. muscle soreness). Her injuries in this video were the result of hitting against objects in the room; they were not the result of wearing one’s body out by performing the same repetitive movement too many times in a row. If this was an actual TS tic involving the head, such as a neck jerking tic, one possible head injury that could result is that she could start experiencing muscle pain, or possibly headaches, from jerking so much. No matter how severe they were, these kinds of injuries would not be dramatically visible to the observer, the way that her red face is.
Even when I had a life-threatening case of TS, as severe as my repetitive strain injuries were, I still did not have any injuries that looked like hers whatsoever, because a TS tic could never make one do something that could result in these types of injuries. Her injuries are so graphic that they suggest that some form of self-injurious behavior may be involved instead. When Sarah’s mother describes her head banging tic, she said that Sarah will bang into anything, including the wall, TV, or kitchen sink. TS tics would never involve objects in the room, because human behavior would need to be involved to be able to perform actions like these that are too complex to be a regular neurological disorder.
One of the most surprising things I noticed about how my symptoms have changed ever since taking medication is how often my symptoms “get the room involved.” Before taking medication, I had never experienced something so bizarre before, but now that I know this phenomenon is possible, I have coined the term “tics involving objects in the room.” I have heard of many others in the TS community who have these types of tics, and few seem to pick up on the fact that this concept totally goes against the definition of a TS tic.
It is important to note that one of the only movement disorders recognized to cause involuntary movements that can involve objects in the room is stereotypy, which is known to often be misdiagnosed as tics. While this could be the case for Sarah, my experience with medication side effects has shown me that there still is the possibility of these being tics, but definitely not TS ones, since they involve bizarre mental illness aspects that a TS tic would never have.
I believe that it has been a pure assumption for years that Coprolalia is ever part of TS. Simply because it is a tic, doctors automatically think that it must be coming from the TS. To my knowledge, this has never been scientifically proven, and the prevalence of coprophenomena between those with TS who have taken medication and those who have never taken medication has never been studied. The only studies that I have ever been able to find simply observed that some TS patients have coprolalia, but did not investigate if these symptoms were actually being caused by TS or were a comorbid condition.
Studies on the use of antipsychotics in those who never had experienced tics before medication have shown that coprolalia is a possible side effect, and is classified as part of tardive tourettism, which means that coprolalia is technically a form of Tardive Dyskinesia. Since taking medication, coprolalia is often one of the most severe tics I have now. I have been so embarrassed by how much swearing, sexual, and violent content medication has put into my mouth and mind. My TS was never explicit in any way before medication, and my experience growing up with TS has shown me that this is because TS is not an explicit illness to begin with. One would not expect it to be anyway, since it is a neurological disorder.
Because of my experience with medication, now whenever I hear about someone with TS who has coprolalia, I joke that “It looks like they must have taken medication,” because it can be very difficult to find someone with TS who has coprolalia and has never taken medication. Sarah’s mother said that she had tried “all kinds of medicine,” so it seems that she may be no exception.
When Sarah’s mother says that “She beats us up constantly,” how does this sound as if she must be describing some type of neurological movement disorder? Movement disorders do not make the person beat other people up, and the involuntary movements would never be directed AT someone.
I remember when my tics were very severe, my mother was walking next to me to console me, and she never got hit by my constant movements. This is because TS tics are never so wild throughout the air that they can be dangerous to the people around the person. I suppose that getting hit by being too close to someone’s tics might be possible, but I believe that this happens on a very limited basis at best, because the kind of movements that TS causes are not very conducive to this no matter how severe they get. This is because TS tics always stay relatively close to the person’s body, away from other people.
It is important to think about all the different kinds of tics that would normally be possible, such as arm tensing, and then realize how these movements would not be dangerous to those around them. Although her mother said “If you are in the way, you are going to get hit,” it seems to me that there is more going on than her family getting hurt only at the times they are in the way. In the video, it can be clearly seen that she is actually kicking at people, versus kicking randomly in the air, which is what one would expect with a regular movement disorder. Similar to the concept of “tics involving objects in the room,” this kicking tic is basically “tics involving people in the room.”
What really makes the tic look like human behavior is the fact that she is intentionally aiming her leg at people. Also, when she kicks people, the movement is way too slow to be a TS tic, making it look completely intentional. To me, her symptoms might be classified as violent behavior, since she is hurting other people without any neurological aspects to her movements.
Earlier on in the video, she looked very angry when she hit her mother, which is another clue that this might be violent behavior, since there are emotions behind the movements. I can testify to the violence medication can cause, as I became extremely violent to the point of being homicidal when I was withdrawing from medication. Note that Sarah may have developed similar side effects, as I saw in another video about her from the same episode that she was threatening to kill others.
It has the semi-voluntary look that makes it clear that it is a tic, yet it involves types of movements that a TS tic would never cause, such as rolling one’s neck to the side that gives the tic a dystonia look to it. If this was an actual TS neck tic, the kind of neck movements she would be doing would involve a simpler nature, such as jerking her neck back without deviating from this movement to make it more complex. I myself have experienced many tics similar to this since taking medication, such as a tic where I have to imitate my tardive dystonia movements by swooping my head forward at an angle.
Sarah’s symptoms are so bizarre that many of those with Tourette’s in Canada who watched the show could not even recognize her tics as being TS. They were so confused by the episode that they actually thought that Dr. Phil was misportraying TS to dramatize the show, when in reality he was showing her actual tics without manipulating anything. They did not seem to realize that these were Sarah’s actual symptoms. The fact that many in the TS community, including myself, could see her symptoms that were labeled as TS and have no idea what they were talking about goes to show how unrecognizable her tics were. With Sarah’s case, it is important to remember that TS tics are always bodily movements, not human actions.
Once a patient is diagnosed with Tourette Syndrome, it seems that most doctors will automatically assume that any tic the patient develops must be from their TS. It needs to be recognized that Tourette Syndrome is not the only Tic Disorder. TS only causes a very specific form of tics in the normal sense, but doctors seem to think that any old tic could be a TS one. In this commentary, I discussed many examples of tics the patients were experiencing that may have very well been tics, but were clearly not following the nature of TS tics whatsoever.
My experience with medication side effects has made me realize that it is important for doctors to acknowledge the possibility of a patient having multiple Tic Disorders at once (i.e., Tourette Syndrome with another Tic Disorder as a comorbid condition). As discussed, both patients in these videos are showing signs of an overwhelming number of non-TS tics mixed in with the few TS tics that they may have remaining. The fact that these two patients had their symptoms diagnosed as simply being “Tourette Syndrome” clearly demonstrates how most doctors cannot tell the difference between TS tics and tardive tics, and also the difference between tics and the other completely different forms of Tardive Dyskinesia.
It is important for doctors to realize that antipsychotics are known to alter the course of tic disorders, considering that tics are a possible side effect that can become permanent, allowing for a potentially permanent progression of tics. The tardive tics can also have aspects to them that TS tics would never have, and when they get mixed in with the patient’s original TS ones, the medication can change the nature of the tics, as well.
By treating TS with antipsychotics, doctors are prescribing medications that are some of the most notorious for causing movement disorders to a group of patients who already have a movement disorder. Despite this, most are still too quick to assume that every involuntary movement that the patient experiences once starting the medication is a tic. By regularly dismissing symptoms of Tardive Dyskinesia as being a tic, I believe there must be so many undiagnosed cases of Tardive Dyskinesia in the TS community.
TS patients may be at particular risk for Tardive Dyskinesia going undiagnosed because many of the medication side effects can be mistaken for their original illness. This can allow for the Tardive Dyskinesia and/or original TS to further progress, as warning signs are not picked up on, and the patient is encouraged to stay on a medication that is only further deteriorating their neurological health. This issue is all the more reason why I feel antipsychotics should not be prescribed to treat TS.
This paper on adverse events in children and youth on Abilify was just published, apparently!
It described 19 cases reported to authorities in Denmark. Five patients were being treated for psychotic symptoms, and 14 for non-psychotic disorders including Tourette’s. The paper is behind a high paywall, but I did find an email for the lead author: firstname.lastname@example.org
As an incurable wonk and skeptic, I wanted to check whether self-injurious behavior was traditionally considered a symptom of Tourette’s. It appears the answer is yes – but a fairly rare one. However, the term “malignant Tourette’s,” describing self-harm, severe violence and other potentially life-threatening symptoms, seems to have emerged in the past ten years. I bumped into it in a 2007 paper on PubMed:
The few articles on “malignant Tourette’s” made clear that a key part of the definition was having a poor response to medication. It’s possible that this new “awareness” of a terribly severe form of Tourette’s may really reflect a LACK of awareness of what Abilify and other medications can do to some young people.
Bravo and bravo again, DG. This is a big, complicated topic — but it sure seems like you are onto something!
Again, great information and insights. The video of Sarah is extremely disturbing. Is it possible that on top of all the Tourette and medication-related tics Sarah is experiencing akathisia? One is left wondering what she would be like is she had not had all those medications.
Very telling Johanna that “malignant Tourette” is partly defined by a poor response to medication!!
The observation that all tics get ascribed to the Tourette and the medication is never a suspect is typical. I have read a lot of stories lately in which a common theme is that people’s behaviour and thinking alters for the worse after the introduction of an antipsychotic and all changes are assumed to be spontaneous and unrelated to the meds. Nobody seems to even WONDER whether it might be the meds.
Concerning recent review http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12556/abstract?campaign=woletoc – concerning as downplays the most effective, safest interventions – behavioral – instead – “Conclusions: When medication is considered appropriate…” – Why? Sponsors UK National Institute for Health Research (NIHR) – and Shire Pharmaceuticals. Why Shire as well? UK professionals please clarify if you can.
In contrast http://onlinelibrary.wiley.com/doi/10.1002/mds.25488/full – “Comprehensive behavioral intervention for tics (CBIT) is a safe and effective treatment for managing the tics of Tourette syndrome (TS). In contrast to most current medications used for the treatment of tics, the efficacy of CBIT has been demonstrated in 2 relatively large, multisite trials. It also shows durability of benefit over time.”
Why Shire? You’ll note that the medications in this article, which supposedly out-perform any behavioral therapy, are not Abilify and other anti-psychotics. They are guanfacine and clonidine, two rather old drugs originally developed for high blood pressure. Both have also been used to calm “agitation” and “hyperactivity” in children.
Shire has just converted cheap old guanfacine into brand-new Intuniv — a pricey, extended-release drug for ADHD. Apparently it works for tics as well, but if your doctor is not convinced there are all those references to high rates of “comorbid ADHD” in kids with Tourette’s symptoms.
You can tell this article is British not American because it actually refers to a “risk of harm” from antipsychotics, which should only be used if the miraculous effects of Intuniv fail to manifest, it seems. That UK doctors have not been conquered by the Abilify Offensive is good news. And the fact that doctors in two such similar countries, supposedly guided by the same research base, think so differently does NOT speak well of Evidence-Based Medicine.
That being said, clonidine and guanfacine are not mild drugs, especially when given to small children — they can produce anything from oversedation to death especially when combined with other psych meds. In 2007 a four-year-old girl named Rebecca Riley died on a cocktail of antipsychotics plus clonidine, prescribed at Mass General for “bipolar disorder.” It caused a public flap which, sad to say, did not last …
I remember the Rebecca Riley story Johanna – merely because one of her medications was one that my son is on (Depakote maybe?) and she, a 4 year old was either on the same if not higher dose than he, a man of 36, which we found incredible. I find the dosing of children – with anything stronger than good food and fresh air – abhorrent. Well, maybe a dose of Calpol if absolutely necessary ( know that one in the US? – it’s a magic potion, available without prescription, found in the medicine cabinet of every UK family with young children! Gives you rest from your whining offspring, lets you sleep uninterrupted, lets you carry on with your planned routines – oh, and comforts and soothes your child). Written with sarcasm – yes as it is overused, in my opinion. Parents turn up at school with said child and bottle of Calpol. Parent:- he/she’s had a high temperature all night but had a dose of Calpol this morning and fine now. Can you give another dose of this at dinnertime?
Teacher:- We can certainly keep the bottle safe until dinnertime but you will need to come in and administer it to your child. We are hardly allowed to even put a plaster on a child’s cut knee never mind dosing of medicines!
Parent’s thoughts:- bang goes my dayout with the girls!
Teacher’s thoughts:- unprintable!!
Back to the medications you mention. From all this re-introducing of old drugs for different complications, isn’t it time that someone, somewhere, took the bull by the horns and came out with a concoction labelled ‘POISON – CURES ALL AILMENTS KNOWN (and unknown) TO MAN’. They may as well – since, as far as I can see, they all have one thing in common – the capability to harm!
This is the NHS information on treatment – which does indeed emphasise alternatives to antipsychotic medication first – and seems to give a reasonably balanced account of the risks/benefits.
Not so sure about this one – but have included it as Abilify is definitely there as a treatment option.
Thank you DG for these completely fascinating insights into TS: I can’t imagine a more informed, enlightening analysis – frightening too, the distinction between a ‘true’ TS tic and the medication-induced ones.
I’m interested in the TS/antipsychotic connection, as after withdrawal from olanzapine my language became – well, fruity to say the least. I swore like a trooper – which makes me wonder if I had actually acquired a form of coprolalia? It would be a tardive ‘tic’ as it only emerged several months after stopping olanzapine. I had no control over the cursing, which included several words I’d never used in my life. As you point out – cursing is rare in true TS but could be a form of tardive dyskinesia which goes unrecognised because the doctors attribute it either to TS in someone with that diagnosis, or in my case, to relapse into mental illness…
This is a fascinating comment. On many levels. Seems to me that my job and that of other docs could be so much more interesting if we just listened to someone like you and DG. We’d find out new things and get our names on research papers where you had done all the work. Why don’t we listen?
You doctors really have no idea what you’re talking about. The medications I was surprised caused my condition to become as severe as it is. Then I have doctors calling the police on me and refusing to treat me because they don’t believe I can’t control my symptoms. How dare you write dangerously misinformed rubbish such as this.
The fact that both of her parents had Tourette’s must be factored in when considering whether this is TS or not. I definitely think TS is a factor but something else is at play too, perhaps medication side effects or a case of strep-induced PANDAS which can cause tics & crazed behaviors like this in some kids. I feel absolutely terrible for this child & hope they can get it sorted soon because this is no quality of life.