Robbie’s Tourette Syndrome Story

Editorial Note: This post by DG continues a series begun a year ago looking at the effects of aripiprazole on Tourette Syndrome Abilify, Tourette Syndrome and Me. The key point here is not just the effect of a drug to trigger 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. This is something that likely resonates with everyone who contributes to RxISK.

Over the past six years, in my observation of others in the Tourette Syndrome (TS) community, I have studied many videos of TS patients who have very severe and unusual “tics” that I had never seen before. At first, I simply thought these patients must have very different cases of TS than mine. But once I took medication and started experiencing some of these same symptoms myself, I realized their involuntary movement symptoms were not really TS at all, but must be medication side effects. It should be noted that I was diagnosed with Tourette Syndrome as a young child. I never took any medication to treat it until age 17, so for almost my entire childhood, the natural course of my TS was unaltered by medication.

Based on the current TS research, combined with my experience of growing up with TS, the following is a commentary of two video cases of TS patients with symptoms that are clearly not TS, but I believe are Tardive Dyskinesia. At key times in each video, I explain why the symptoms believed to be TS are really not and what I believe the symptoms actually are. In order to differentiate between the two, in each part of the commentary, TS tic terminology is underlined and Tardive Dyskinesia terminology is in italics. There are so many TS families and doctors who believe these types of unusual symptoms are actually part of TS and it is my hope that this commentary will help educate others and shed new light on medication side effects and what TS tics really are.

Part 1: Robbie’s deep brain stimulation

The video can be seen on YouTube.

0:07 – Oromandibular dystonia (OMD) with associated cervical dystonia and blepharospasm

This appears to be a dystonia version of “Classic Tardive Dyskinesia.” Based on what can be seen visibly, there is not a single tic involved here whatsoever. From the video’s still image preview alone I could already tell that he must have Tardive Dyskinesia, even before actually watching the video, because his symptoms have the completely involuntary look of Tardive Dyskinesia. If these movements were actually tics, they would instead have a semi-voluntary look to them, which means TS tics look as if they are a voluntary movement, even though the person still does not have control over the movements. This is partially due to the fact that tics are temporarily suppressible, which is a characteristic that is unique to Tic Disorders. Since his movements are completely involuntary, they look too unnatural to be tics, as they always look more voluntary and closer to the way real human movement looks than Robbie’s movements do.

Of these involuntary movements, probably the most obvious form of Tardive Dyskinesia is the Blepharospasm (eye dystonia). Notice how Robbie’s eyes stay closed the entire time. As is typical for dystonia, this means that the eyelid movement is being sustained as the other movements continue on. This is causing the functional blindness associated with the condition. This is not an eye tic because tics are quick and repetitive movements. This movement is a single long-lasting movement, meaning that it has neither of these two characteristics. If this was an actual eye blinking tic, for example, he would be quickly opening and closing his eyes a lot.

One of the most dramatic differences between a tic and his mouth, tongue, and neck movements is the fact that they all have a starting and stopping look to them that a tic would never have. This makes the transition between each position jerky, as opposed to being smoother movements. The sliding look to some of the tongue movements as they transition between different locked positions, along with the muscle pulling look to all of the movements also contribute to the completely involuntary look that suggests that he must have Tardive Dyskinesia. His neck being pulled backwards is easily recognizable as being retrocollis. The actual movement itself is also a clue, since dystonia is well-known to make the neck thrust backwards, not TS tics. As his body parts move, it is not long before they keep holding a still position for a brief moment before continuing on. This sustained aspect is a clear sign that these involuntary movements must be dystonia, as this is a key word in its medical definition.

So many of both the tongue and neck movements are occurring at an angle, which normally would not happen with a TS tic. These types of movements are instead associated with dystonia. The tongue movements are technically not repetitive, either, since his tongue keeps going randomly all over the place from one corner of his mouth to another. It is not following the strict repetition that a TS tic would have, which is the exact same movement happening again and again in a row. I know that there is such a thing as sticking out one’s tongue tics, I have experienced them myself, but these will look different. If this was an actual sticking out one’s tongue tic, one possibility would be that he would keep sticking out his tongue straight forward many times in a row and not deviate from this movement. All of these characteristics are clues that Robbie is experiencing involuntary muscle contractions that are coming out all on their own, rather than semi-voluntary movements that the person is forced to release, which are what a tic is.

Note that since he is showing signs of both Oromandibular dystonia and Blepharospasm at the same time, this point in the video perfectly matches the definition of Meige Syndrome. Since he appears to have other dystonic movements (cervical dystonia) mixed in with these symptoms, he may have even developed multiple movement disorders that cause different forms of dystonia.

0:26 – Self-injurious behavior

Robbie’s mother describes the symptoms as “He continuously beats himself up, he gouges out his eyes, he punches himself…” Who would hear this kind of description and think that this must be some type of neurological movement disorder? Doctors who treat Tourette Syndrome need to remind themselves of what a tic is. Using common sense, under normal circumstances, how is brutally beating oneself a tic? These symptoms look more like human behaviors that he is doing to himself than involuntary movements where the body is moving by itself. It is important to realize that these behaviors are common symptoms of self-injurious behavior, and so it seems clear that these symptoms involve a mental illness.

TS is not one of the movement disorders that causes movements that can be so forceful that they are violent, as these kinds of movements are normally associated with more serious movement disorders. Even when my TS was a medical emergency, I never had tics that were this extremely forceful, because this is not the nature of TS tics. It was not until after taking medication that I started experiencing tics that were more forceful than I had ever had before.

For example, medication caused me to develop a coughing tic where I have to cough so hard that it sounds like a firecracker going off. I did have a coughing tic before medication, but never one that was so forceful that it was not recognizable as being coughing anymore. Another clue is that TS tics normally would not involve “doing a behavior” to oneself, as if engaging in a body-focused repetitive behavior. This means that TS tics would not involve movements where “body parts are touching and affecting other body parts,” in this case the fists hitting one’s chest as a result of the arm movements. An actual TS arm tic would normally involve the arms making some uncontrollable movement that is only affecting the arms, such as tensing up one’s arm muscles.

Also, as he punches himself, the movement starts on one side before moving to the other. TS tics never have a moving pattern between two body parts of the same kind to form one big involuntary movement. There may very well be a tic aspect to Robbie’s punching, as well, but the only reason I would even think that these symptoms could possibly be tics at all is that I have developed so many bizarre tics of my own from medication. Before medication, I would have never been able to imagine how someone could have these kinds of symptoms as tics. But now because of my own side effects, I understand what may be happening. I have seen firsthand how medication caused me to have so many mental illness side effects that it “fused” to my tics, creating hybrid symptoms that are a neurological tic and a mental illness at the same time.

It seems that in Robbie’s case, the medication caused self-injurious behaviors (mental illness symptoms) that it may have fused to an arm tic to form a “self-injurious tic” hybrid. Because these tics have bizarre mental illness aspects to them that are totally not normal for TS (self-injurious behaviors in any form are not part of TS), they are not TS tics, but instead a special form of tardive tics most likely caused by medication side effects.

0:52 – Opisthotonos/opisthotonic posturing associated with tardive dystonia

This movement should have been one of the most obvious to doctors that it is not a tic. TS tics are so different from opisthotonos that trying to tell the difference between them should be similar to trying to tell the difference between an apple and a raspberry. He is on the floor with his back arching into an abnormal posture. Out of all his movements in question, this one shows the sustained aspect of his movements the most. This gives his muscle movements a stiffening up look that makes it clear that this movement is completely involuntary, without the look of tics whatsoever. The arching gives his back a look of hyperextension. His back keeps locking up into position, and since tics are very quick and repetitive movements, they would never hold a person in an abnormal posture, not even for a short moment.

His mother describes the involuntary movements by saying, “His body can twist and contort into positions that you would not even think was humanly possible.” This should have been a red flag that these movements are not tics. Twisting and contorting are not possible tic movements. As the only type of movements that are ever possible are ones that could be performed as a voluntary movement. Being semi-voluntary, TS tics can never cause movements that would be humanly impossible without a movement disorder. This is a key characteristic of certain other more serious movement disorders. Again, one must use common sense to remind themselves of what a tic is, and then realize who would ever have a tic that takes them into extreme postures.

At one point, Robbie basically gets into the classic opisthotonos position of being on the floor with only the back of his head and feet touching the ground. If one is on the floor because of involuntary movements, this should be a clear sign that this is not a TS tic. I in particular would know this, because I have experienced tics in such a wide variety of body parts (including my back) throughout my life, and I have even experienced how severe TS tics look when they are a medical emergency. Even then, I still never had a tic like this. These kinds of back movements simply do not happen because they are not the nature of TS tics. Instead, this type of movement disorder often suggests that one has been poisoned by something. The movement and posture of this symptom give his body a “dead” look that is normally associated with movement disorders caused by serious motor toxicity.

Considering that the video says that Robbie “has tried over 40 medications, all with severe side effects,” it seems clear to me that his back arching was caused by chemical toxicity from medications. In fact, some medications, such as Prolixin, list opisthotonos as being a common side effect in their Prescriber’s Guide.

1:08 – Hysteria

As is the case for Robbie’s other bizarre tics, his “verbal outbursts,” as they are referred to in the video, look more like a mental illness than a movement disorder. As he is seen thrashing around on the floor near the bed, the scene has an appearance that to me is reminiscent of the hysteria seen in some of the old time mental institution patients. He is even making shrill noises similar to a rabid dog ripping something up. The term mental instability came to mind for me as I watched him, and this was another time in the video where as a person with TS, I would have never been able to imagine how this kind of behavior could be tics, had I watched this video before taking medication.

He looks inconsolable in such a way that looks as if something emotionally unstable may be going on in his mind at the same time as his outward uncontrollable behaviors. I believe that it is crucial to bring up this possibility, considering that Tourette Syndrome is normally treated with antipsychotics, which are recognized to extensively alter the areas of brain related to one’s sanity, and were originally associated with the treatment of institutionalized psychiatric patients. When used in sane patients, such as those with TS, it should follow that antipsychotics have the risk of causing mental instability, since they are manipulating brain areas where there is nothing wrong to begin with, creating new problems.

I developed hysterical emotions as a mental illness side effect of medication, and maybe Robbie developed something similar. In his case, though, he could have developed hysteria in the form of a hybrid symptom where the mental illness symptoms are fused to tics to form “hysterical tics.” This is, of course, assuming that there are any tics involved here whatsoever.

1:40 – Cranial dyskinesia

The movement is too fast to be a tic. There is a strange artificial or robotic look to the rapidness of the movement, which makes it clear that this movement is completely involuntary. Since TS tics have a semi-voluntary look to them, the movements will always look more human and realistic than this movement does. As quick as tics are, when Robbie’s head whips around in a circular motion, it is so fast that it actually makes the movements that occur right after it look slow in comparison. Note that the other movements after it, including the showing his teeth movement, are actual tics. One can tell by the fact that his showing his teeth tic looks as if he is doing it to himself compared to the head movement right before it.

Although I have never experienced this type of Tardive Dyskinesia myself, I was already familiar with it before watching Robbie’s video, since I have seen other videos in the past of patients diagnosed with Tardive Dyskinesia who have this exact type of movement, as well.

2:34 – Eyes

This is about as close to normal Tourette Syndrome as Robbie’s symptoms ever come throughout the video, and one of the few times where he may actually be experiencing a TS tic. His squeezing his eyes shut tic has the distinct semi-voluntary look of TS tics. This movement in particular can be used as a comparison to the other movements that do not look like tics.

*****

This commentary is only from what we can see visibly, but there are internal factors, as well. Based on the fact that Robbie has so many different involuntary movements that clearly are not TS tics, had his doctor asked him if any of these symptoms had an urge or were suppressible at all, he would have probably said no. This would be another clue that these movements are not TS tics, since this would mean that his movements have lost some key characteristics of TS tics.

Taking all of this into account, it is scary to think that Robbie received a highly invasive and dangerous brain surgery when no medical professional involved with his case fully comprehended what they were operating on him for.

Continued in Part 2: Sarah’s Tourette Syndrome Story