Ask Dr. Ticcy: Tics past age 30

Dr. Ticcy is a pseudonym for the Tourette Syndrome Foundation of Canada National Office, which draws on information from experts across Canada and beyond to answer questions from the TS community. Please send your questions to admin@tourette.ca with the salutation “Dear Dr. Ticcy.”

Dear Dr. Ticcy,

I thought that my tics would decrease as I got older but I am 30 years old and my tics are worse than ever. Does this mean that I don’t actually have TS? Will my tics ever decrease or go away?

Sincerely,

Ticcing-at-30

Dear Ticcing-at-30,

Typically, when someone has TS, their tics usually begin early around age 5-7. They increase with time peaking between the ages of 10-12 and then after puberty, their tics start to decrease in intensity. There are some cases, however, that do not fit this pattern. Some people with TS have tics that are intense in both childhood and adulthood.

Others, like yourself, have tics that are mild in childhood and more intense or frequent in adulthood. While this is rare, it is possible though the reasons for this pattern are not well understood by scientists. Some possible explanations have been suggested such as cocaine abuse, use of anabolic steroids or extraordinary life stress.

Your question about whether your tics will ever decrease is difficult to answer. It is difficult to say how they will progress with time. On the plus side, since TS is not considered a progressive condition, we have no reason to assume that they will continue to become worse or more intense as you age.

If your tics are interfering with your daily functioning or if they are causing you any physical pain or discomfort, you may wish to visit a specialist to discuss potential treatment options. Possible treatments include behaviour therapy and/or medication. Keep in mind that stress, positive or negative excitement, tiredness, and illness are likely to increase your tics. In contrast, good sleep hygiene, exercise, healthy eating, and generally good mental and physical health have the opposite effect on tics.

If you would like some more information about treatment options, specialists, or tic triggers, please contact a local volunteer or the National Office of Tourette Canada.

Sincerely,

Dr. Ticcy

Tics and speech difficulties in people with TS

Tics are an important feature of Tourette Syndrome (TS), whilst impaired fluency of speech is the dominant overt feature of stuttering. To establish any relationship, we looked at tics in people with TS and people who stutter and have found that tics are present in both groups. We also found that some people with TS had impaired fluency of speech in specific tasks (reading) that were similar to those that we saw in people who stutter.

We analysed the stutter events in both groups by looking at repetitions of parts of words, prolongations and blocks where people get stuck and stop the smooth flow of their speech. One thing that emerged was that not all TS participants had stutters and not all people who stuttered had tics (about 50 percent of the TS group had impaired fluency of speech and about 50 percent of the group of people who stuttered showed tics).

This shows that there were crossovers of these features for some participants. We hope to be able to secure funds to investigate this matter further by conducting an imaging study that will compare the way the brain works in groups of participants who show both types of symptom with those who only show the some symptoms.

This may provide ways of identifying participants in both groups of participants where long-term problems can be prevented, help identify those in need of intervention and suggest new ways of addressing their problems in treatment.

This research was completed by L. De Pellerin as part of an MRes. If you have any further questions regarding this research please contact Miss Seonaid Anderson.

The experiences of diagnosis in adults with Tourette Syndrome

TS is a clinical diagnosis, meaning that there is not a specific test for the disorder, it has been noted to be difficult to diagnose with research showing delays in the diagnosis of TS (Wand et al., 1992; Freeman et al., 2000; Shilon et al., 2008). Cultural factors may also play a role in the social perceptions of TS and differences were found between cultures regarding the impact of TS on quality of life (Mathews et al., 2001; Zinner et al., 2012).

Very little research has looked at the subjective experience of having TS and as far as the author is aware there are no studies which have investigated the reasons for wanting or not wanting diagnosis in TS and whether having a diagnosis is a positive or negative experience for those with the disorder.

Looking at neurodevelopmental disorders such as autism spectrum disorders, attention deficit hyperactivity disorder and motor disorders, it appears that there are a range of advantages and disadvantages related to obtaining a diagnosis of a neurodevelopmental disorder. Significant disadvantages relate to the lack of a cure and the stigma associated with the disorder and the significant advantages are related to help and support following diagnosis and greater understanding of the disorder.

The aim of this research was to find out the experiences of those with Tourette syndrome (TS), specifically what having a diagnosis means and whether it this is useful for those with TS.

Method – Nine adult participants with TS were recruited through Tourette’s Action. Semi-structured interviews were completed either face to face or via telephone and the resulting transcripts were analysed using thematic analysis.

Results – There were three main themes resulting from the data: Continue reading

52 Weeks of TS: Week 2

EDITOR’S NOTE: On Tuesday over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed last week’s debut, here it is. For more information about Troye, please click on his name or visit his website.

I’m thinking of a quote, well obsessing about a quote. ”It gets better with age.” We can connect this quote to a lot; wine, some cheeses, and our favorite pair of jeans. What about us as people? Do we get better with age? Having TS makes me wonder. Studies say that about a quarter of children with TS endure tics into adulthood, and only about 5 percent to 14 percent suffer with tics and actually encounter more and new tics in their adulthood.

Well, being nearly 40, and still living a tic-filled life, I’d like to welcome that 5 percent to percent. I actually feel that my tics have worsened over the years, more frequent, and new ones, but hey, if I wasn’t like this I probably wouldn’t be where I am.  In the past few years I have done many things for and with the TSA, and now am on the board for the New York City chapter. I use my writing as a window to the truths of TS and variation of symptoms we as sufferers go through.

My week started off sad, Sunday I had to take a friend to the emergency vet to have her cat put to sleep. My husband drove and I sat in the back seat sacrificing the front seat for my grieving friend. Torturous for me, I have major anxiety sitting in the back seat of my own car. I can sit in the back of a taxi, but panic sets in, in my own back seat. Yeah I know, strange, but it’s the world of TS.

I have been very OCD this week, organizing and cleaning. I have been trying to simplify everything this week. I cleaned my work station at work and got rid of everything I don’t use, I deleted everything on my iTunes and reloaded everything, and I went through all of my pictures and got rid of everything I didn’t want, then put all I wanted on my online storage. The bonus was that I freed up a lot of space on my computer.

I also decided I didn’t like writing in my bedroom, so I took apart my work area in there and cleaned out my dining room and erected an office in there. My husband knows if I have something in my head it’s going to happen and usually happen fast. I woke up one morning and looked in my dining room, at the huge table that in the four years we’ve lived here, we’ve used five times. (One time was to play dominoes, and one time was to build a puzzle). We never even go into the room, it is basically an unused room. Through this thought process, I look into my room and realize the same goes for my writing station in my room, so when I told my husband this it was basically a roll off the eyes and a “whatever dear.”

It’s getting cold out, still no snow but I’m reminded of how much I hate winter. Everyone on the subways are sneezing and coughing. There is just not enough antibacterial, and Lysol to calm me down. Although I am excited, I made the best purchase this week. I bought three automatic antibacterial dispensers. I put one in the kitchen, one in the bath room, and one in the cat closet next to the cat pan. It always weighed on my mind, I’m using antibacterial to kill germs, but if I’m pressing the pump to get the gel out, I’m just putting germs on the pump. So then I would have to clean the pump, but not anymore. I just put my hand under and the sensor detects my hand and provides me my germ killing serum. Why can’t we have these on the subways?

In my mind there is a simple answer to my subway issues — agoraphobia. If I just didn’t take the train I wouldn’t be so freaked out about all the people staring at me for my tics, or the stress that I go through trying to suppress my tics until I get off the train. And no germs spreading!!  Secretly I’d love to be agoraphobic, well I guess it’s not that much of a secret if I’m expressing it here. I’d like to be agoraphobic, but instead of restriction to my house, I’d be restricted to my neighborhood.  I feel safe in my neighborhood, I’m fine as long as I don’t have to deal with public transportation.  I live in a nice small neighborhood in upper Manhattan which is primarily occupied by small mom and pop stores, so I never really deal with places having big crowds. It’s a nice thought, but I have to push on.

Well, we take a deep breath, one step at a time, and one tic at a time. Until next week, “I’ll tic to you later.”

A personal account of living with Tourette Syndrome & associated disorders, part 3: Quality of life

In my first two posts, I talked about what my life was like early on and the various phases of treatment I had to go through leading up to present day. Now, I’ll talk about how Tourette Syndrome can hinder one’s quality of life, especially when it comes to work,

Tourette Syndrome is not life threatening, but it can be living threatening — and what I mean by this is that it can seriously hinder you from living to your full potential.

Probably the most difficult time for a person with Tourette Syndrome is the period of transition from school to the workforce and life, because Tourette Syndrome really hinders you during these periods of significant transition. For people with Tourette Syndrome this period is commonly referred to as a “transition cliff.”

I know this as a fact because right from the time I graduated university to the time I was diagnosed and started treatment for Tourette Syndrome some 15 years later, I was in a void of not being able to function properly — a period where I had various jobs, many of which were part-time, so my career development suffered immensely.

Many aspects of Tourette Syndrome including the mental anguish of emotions that we go through on a daily basis are very difficult for someone who doesn’t have the disorder to understand, which is why properly educating people about the disorder is very important. Continue reading

A personal account of living with Tourette Syndrome & associated disorders, part 2: Treatment

In my post yesterday, I talked about what having Tourette Syndrome was like in my early life. Now, I’ll talk about how it started to be treated leading up to present day.

My initial treatment was as follows: I was on Pimozide for a few months, and it turned me into a virtual zombie. Then I was put on Sulpiride for about 4 years, and it was better, but it took a good part of the life out of me. Then I was put on Olanzapine for 5 years, which was better again, but it still took a good part of the life out of me.

In May 2010, my new neurologist put me on Tetrabenazine because at that point in time I had been taking neuroleptics for a little more than 10 years and with continued use I would be at an increased risk of developing Tardive Dyskinesia, a very unpleasant, debilitating and irreversible condition.

Tetrabenazine was the best med up to that point with regards to its side-effect profile, which was more tolerable; however, it wasn’t really effective with regards to my motor tics and jitteriness. Continue reading

A personal account of living with Tourette Syndrome & associated disorders, part 1: Early life

I hope the essay that follows about my experience dealing with Tourette Syndrome serves to help the individuals suffering from the disorder and their parents. I’ve made the essay as detailed as possible while at the same time not making it too long to read.

I’m a male in his early 50s, who for virtually all of his life has had several motor and vocal tics. I basically lived with these tics not knowing where they stemmed from. The primary motor tics are: eyebrow raising and squinting, shoulder shrugging and torso moving. The primary vocal tics are: stammering (at times severe), rapid speech, altered (higher) speech volume, word emphasizing and the repetition of words or phrases.

The motor tics have caused peer rejection at times (especially during my younger years). The vocal tics, however, I’ve found to be most debilitating to my social life and career because of not being able to communicate effectively; many times not being able to communicate at all because of severe stammering (causing me to freeze-up when trying to speak as if experiencing speech paralysis).

If you can’t communicate, there is no point in how much you know because you can’t express it properly to anyone. Continue reading

Adults struggle with Tourette Syndrome, too

I am not a parent of a child with Tourette Syndrome; however, I myself have been living with TS for most of my life. I wrote a short essay about my personal experience living with TS that I will post soon because I strongly believe it can help parents of children with TS better understand the disorder. I’ve already posted it on other TS-related web sites, and it was well received and appreciated.

I was diagnosed with TS very late in life — which is not a good thing, as you know — and I never had any family support because of incredible ignorance … until I met my wife. So my struggles in dealing with the condition were many, as you may imagine. That is it for now, and thanks for reading what I have to say.

Most of us go through life without realizing the difficulties experienced by those who have some form of physical or mental disability.

— Terry Waite