The Truth About Tourette’s Treatment

If you have been looking at the list of posts I’ve written on Tourette’s, you may be a bit curious as to why I haven’t devoted any posts to Tourette’s treatment. And the main reason is, there aren’t any proven treatments for Tourette’s. So here’s a list of things which research has shown to be at least somewhat effective in treating some forms of Tourette’s:

• Neuroleptics such as Risperdal (however some see tics worsen, and many experience adverse side effects)
• Neuroleptics on low doses AND a nicotine patch (reduces the side effects, may have unknown adverse)
• Nicotine alone (more anecdotally and from case studies. Research forthcoming)
• Zoloft  or clonozopine (usually only when OCD tendencies are also present)
• Cannabis (same situation as nicotine)

Here are some non-medical interventions that have shown some promise:

• ABA therapy on a reinforcer for X number of seconds spent without ticcing (according to a certain protocol. Be sure to have supervised by professional)
• Occupying the hands with fidgets and the mouth with gum
• Weighted clothing/blankets

The truth is though that no treatment will work for all individuals, and there are some who will not find an effective and not adverse treatment protocol.

Note: When evaluating therapeutic effectiveness, note that the natual course of Tourette’s is to wax and wane in tic frequency. This may sway results.

Tourette’s Vs. Commonly Confused Diagnoses

I was examining my search terms list for the past month, and I found several themes arose quite often. One common interest was in discriminating TS from other similar disorders, so I thought I would devote a post to differential diagnoses of Tourette’s Syndrome.

 Tourette’s Syndrome vs. Tics

Tourette’s Syndrome is a disorder characterized by the presence of both multiple motor tics and at least one vocal tic for a period of longer than a year without more than a 3 month break in symptoms. It is possible to have tics and not qualify for a Tourette’s Syndrome diagnosis. Motor tics are very common for boys between the ages of 4 and 8 and often fade after only a few months.  Individual vocal tics (without motor tics) are rarer, but do also occur, and often within the same age range. These are called Transient Tic Disorders, and are often not a sign of underlying neurological issues. It is also possible for a person to have only one motor tic which lasts for an extended period of time. This is reffered to as a Chronic Tic disorder, and may need medical treatment, depending on the severity of the tic and its interference with an individual’s quality of life.

Tics vs. Compulsions

This is a rather grey area. Tics can be compulsions, but this is not always the case. Many Tourette’s tics are compulsions. They are accompanied by a growing need to release the tic, which, if ignored, can entirely consume the individual’s  concious thought. Releasing the tic then ends the need for a period lasting from a few seconds to several minutes. This is very similar to OCD compulsions, which involve a growing need to peform a certain activity (like say a certain phrase, touch something a certain number of times, etc.) which is then released by performing this action. For this reason, some researchers consider Tourette’s a very particular type of OCD and research regarding the brain regions affected in each disorder lends some credence to this claim. These tics can often be reduced using medications typically effective for OCD such as Zoloft and anafranil, which reduce the compulsive urge and therefore the tic.

There are also tics, however, which are not compulsions. These are motor movements or vocalizations that do not involve a pressure to perform, and which the individual has absolutely no control over (contrast to compulsive tics where the individual can control when the tic occurs, but not that the tic will occur). The individual has no forewarning that the tic will occur, and may not be aware they are performing the tic. These tics will not be affected by medications which reduce OCD symptoms, but may be helped by nicotine, muscle relaxants, and neuroleptics such as Risperdal.

Tourette’s Vs Epilepsy

Before explaining the differences between Tourette’s and Epilepsy, it is necessary to establish what Epilepsy is. Epilepsy is a neurological syndrome characterized by the presence of more than one seizure across an individual’s lifespan. Seizures vary in type, intensity, and reccurrence, but can be divided into a few key types. First, they may be partial (affecting only a certain body part) or general (affecting the whole individual) and simple (conciousness is maintained) or complex (conciousness is not maintained). The four main types are partial, absence, myoclonic, and tonic-clonic. Absence seizures are characterized by periods of staring and non-responsiveness for a period of tenths of seconds to a minute. Tonic-clonic seizures are what people typically picture when mentioning seizures, with flailing body parts and shaking. Myoclonic seizures involving a twitching or jerking movement.

Myoclonic and simple partial seizures are the only two which would really be confused with Tourette’s. I have a friend who has frequent myoclonic seizures, but not TS, and our outward presentation can be very similar at times. The difference can be found, however, on an EEG. While her seizures will show up on an EEG, my tics will not. If a neuro cannot determine the difference between a seizure and a tic by observing the presentation, an EEG will often be ordered. Simple EEGs can be conducted in less than an hour, although overnight EEGs are required if the seizures are infrequent or only occur during sleep.

Tics vs. Stims

Many people confuse tics with stims/stereotypy. For this reason, I have written a full article delineating the difference which can be found here.

For additional information about Tourette’s, I encourage you to visit this list of links.

Not being defined by my disability

The school year is beginning anew. Classes are meeting for the first time. Professors are forming first impressions of their students. Freshmen are arriving on campus and trying to navigate the pre-established social order.

The arrival of the freshmen means there are 650 new students who don’t know about my Tourette’s. This equates to 1300 eyes turning to stare as I walk down the main pathway. 650 voices whispering crude jokes, nasty comments, or just the curious, “What is that dude’s problem?” These are 650 friendships killed before they ever had a chance to blossom, because people are afraid to get to know the weird kid (Is he high or something? Maybe he’s just crazy…)

As I pondered this issue, I came up with a few solutions.

The first was a sandwhich board reading, “Yes I have Tourette’s. No staring at me won’t cure it.” But that  would just draw extra attention to my differences, something I truly wanted to avoid.

The second option was to say nothing, to remain completely mum about the issue. The TS acts as a built-in filter against people who are judgemental or shallow, so I would be guaranteed only to start friendships with those who had matured beyond the “appearances are everything” stage. But then I realized this was college freshmen I was talking about. I would bet less then five of the 650 have passed that developmental milestone.

The third option, the only one of which had a chance of being effective, was to casually talk about my Tourette’s in conversations where it was relevant. This might sound impossible (when is TS relevant, and how do you casually mention it?) but I’ve accomplished it three times already and have only had positive reactions.

• Time 1: In the Freshman seminar I TA, we had students take as many jellybeans as they desired, and then for each jellybean reveal an interesting fact about themselves. My three: -In 9th grade I had to jump into a limo with a man I’d never met in order to escape a man on PCP with a knife and a piece of broken glass. -I have Tourette’s and make weird noises and movements sometimes, but it’s a neurological disorder which isn’t contaigous or deadly. -I was bitten three times this summer by a child angry I put on the wrong Sesame Street Video (show off arm scars). This way I got the information out, but I ensured I had other topics which would make far more interesting conversation fodder after class. (Moreover, I won for most outrageous factoid with the PCP story).
• Time 2:  In my autism investigations seminar, we have to discuss our interests in neuroscience in a roundtable fashion. After I talk about my interest in autism, I say, “I’m also fascinated by the use of drugs other than antipsychotics to control Tourette’s, particularly nicotine and marijuana. And yes, I know from personal experience that both are effective.” The class laughed, and though it might have registered that I have TS, the fact that I know where to find good bud will trump any reservations they have about my disability.
• Time 3: This time involved a prolonged tactic. The professor was very strait-laced and there was only time for one interesting fact, so I had to use the TS one. But I made sure the students didn’t leave with TS being the only association with my name. During a discussion of the importance of the Victorian period, I made a bold claim about no one remembering female authors who wrote prior to the 1800s. Thi stimulated a great deal of debate and discussion, and suddenly I was the “daring statement guy” instead of the “guy with Tourette’s.”

I have two classes left which have not yet met, one beginning today and the other on Monday. For both I plan to utilize one of the three tactics listed above. By the time Monday ends, I will have told roughly 100 people about my TS, not counting those who knew from last year. On a campus with only 2100 students, gossip spreads like wildfire, and by next Friday, I should no longer be an oddity, but rather a kid whose had cool adventures, smokes good green, can have a stirring intellectual debate, and oh yeah, has Tourette’s but not the cursing kind or anything.

Getting it Right: Empowering a student with a disability

Having a non-classroom-friendly disability (i.e. Tourette’s), I’ve come to an understanding that not every teacher is going to be supportive. Indeed I’ve had some rough experiences including my favorite: “Yeah, I know you have TS but couldn’t you control it during your speech? Tourette’s is so unprofessional.”

But these experiences make me particularly excited about professors who “get it.”

Deciding to start off the semester on the right foot, I sent all my new professors a quick email explaining that I had Tourette’s, didn’t require accommodations (except for the alternate testing location granted by the honor code), and was willing to answer any questions. Then I waited, nervous about how these individuals I’ve never met would respond to this revelation. A week passed and my anxiety grew.

Then today, in my email, sat this message from a professor in her very first year of teaching:

“Thanks for letting me know. Perhaps you might stop by my office hours during the first week of classes and you can give me some tips on how I can be supportive.For example, if there is something another professor has done that helped your experience in the classroom, I’d love to hear about it.”

I couldn’t have asked for a more positive response. She’s not only understanding of the situation, but also aware that her knowledge of the best methods to handle it are limited and she’d appreciate my input. It is every self-advocates dream: a chance to express a preference based on knowledge of what has been effective previously. Professionals that work with the disabled population could save a great deal of time by following that exact method.

I take heart from the fact that this response came from a first-year professor. It gives me hope for how the next generation of teachers will move disability awareness and empowerment forward.

4 Key Questions: Tourette’s Edition

This post is a continuation of the Ask an Aspie post proposed by Littlefluffycat. She asked the following questions:

What’s the hardest thing? What’s the easiest thing? What do you wish everybody knew? How should parents explain if needed?

Yesterday I answered these questions for autism. Today I will answer them for Tourette’s.

What’s the hardest part?

The hardest part of having Tourette’s (TS) is explaining it to children. Working in the children’s section of a library, I have several curious onlookers a day wondering what I am doing with my neck, or why I am making weird noises. At my friends’ houses it is even more difficult as the siblings have seen me before the TS-onset and know I wasn’t always like this. How do you explain TS to a child in a way that they will understand but that will not make them fear they will get it as well? I usually ask the child to tell me what they think it is, and go from there. One boy said it was sort of like the hiccups, and I agreed, saying it was similar to a case of the hiccups that never goes away. But it seems I should have a more cogent response.

What’s the easiest thing?

The easiest thing about my TS is having it at college. No one wants to look insensitive or foolish so very few people stare or make comments. It does create a weird separation however between campus and the “real world”.

TS has also made some aspects of my life easier. I am less inhibited in action and speech now that I have tics. People are going to turn and stare anyway, so I might as well give them something to stare it. I am much more willing to wear louder colors and behave in a less restricted fashion now then pre-TS.

What do you wish everyone knew?

I wish the general population knew that Tourette’s Syndrome is not deliberate or planned. It isn’t bad behavior or “acting out”. Tourette’s is a neurological condition, which happens to present in an attention-generating fashion.

I also wish people were more familiar with corprolalia (involuntary cursing), and the fact that it is quite rare (only between 8 and 13% of individuals with TS have corprolalia). I wish the media didn’t always present TS individuals as having corprolalia, and that more positive images of people with TS were used in general.

I wish people I associate with knew that it was okay to ask questions or be curious (I know I would be). I also hope they know that if I am really driving them to distraction they can ask me to leave until I get my tics under control. I’d hate my tics to put people under unneccesary duress.

How should parents explain?

I think the public is generally familiar enough with TS that explaining would be rather simple. I think, as always, it is best to put the child first. “This is my son X. He’s in 3rd grade and plays the tuba. He has Tourette’s Syndrome which means he makes noises and movements that he can’t control. He also has some difficulties with paying attention to the task at hand, and needing things just so. Did you know he won the spelling bee this year? Which kid is yours?” This gives the disorder a human face, and prevents the child from being singled out as “The Tourette’s kid.” Instead he is, “X, the spelling bee champ, who happens to have TS.”

I think it must be more difficult to explain it to the actual child. I was fortunate to have a late-onset Tourette’s, so I was already generally aware of the syndrome and able to do most of the research on my own. I would speak as positively as possible to the child, avoid bringing exessive negative attention to the tics, and emphasize your child’s strengths and similarities to others rather than his differences.

Do you have something you are dying to know about autism or TS? Be sure to ask on the Ask an Aspie page to your right.