Something I discovered about Clonidine

The literature on Clonidine says that, for some people, it increases the severity of tics. Well, I’ve been taking it for almost two years now and I believe I discovered something about how it interacts with my body.

Ever since I was put on Clonidine, I’ve had an increase in the frequency of my eye tics and a new incidence of mouth tics — especially as the day wore on — that on some days is very difficult to deal with. Then, a month ago I thought that maybe it’s the Clonidine that is causing this, so I decided to change the way I take the drug by taking half of my daily dose during the day — but only starting in mid-afternoon — and taking the other half at bedtime.

The results so far of this change: Well, the increase in the frequency of my eye tics and my “never-had-before” mouth tics have both virtually vanished, and all other tics and symptoms are controlled just like before I made this change in the way I take the drug.

Also, because I now take half of my daily dose at bedtime I am sleeping better with fewer awakenings, and along with taking less Clonidine during the day I am more alert during my waking hours. So I am still getting the same 24-hour dose, but now I only start taking it in mid-afternoon as opposed to early morning and half of my daily dose is taken at bedtime.

Book provides help for parents raising a son with TS

I want to tell you of a book I finished reading not too long ago that can give you some good perspective on raising a son with Tourette Syndrome. It’s titled “Memoirs of a Father,” by Michael Fekete. It’s the author’s story of raising a boy with TS and is available from the Tourette Syndrome Foundation of Canada. At the end of the book, the author provides what I think are great “rules of parents conduct” for raising children afflicted with the neurological disorder.

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