Tourette's - An Insider View

Editor & Founder of Conditional Publications, Vrinda Pendred, discusses anti-depressants used to treat Tourette’s Syndrome – and her personal experience with them.

So far in this series on Tourette’s Syndrome, we have discussed:

  1. What Tourette’s really is, from an insider perspective.
  2. The causes and triggers of Tourette’s.
  3. Prescription medication for Tourette’s.

If you missed any of these articles, please click one of the links above to read them.

As promised, today we will discuss anti-depressants prescribed for the treatment of Tourette’s Syndrome.

Important Points to Bear in Mind

As mentioned last time, each of us is unique, with a unique body, a unique nervous system, and a unique state of health.  What works for you might not work for me, and vice versa.  Therefore, when considering any prescription medication, always ensure your doctor makes a full health profile unique to you prior to commencing any drug trials.  The minute something doesn’t feel right, speak to your doctor about it.

I also want to emphasise that, in this and future articles, I am not advocating or condemning any particular method of treatment.  I am fully aware that the subject of this article is controversial, to say the least.  Whenever I speak about it, half my audience hate me for it – but the other half say they relate to my story.  Once again, I am not here to judge you for choosing (or not choosing) a particular medication or ‘alternative’ remedy.  I simply believe in making fully informed decisions.

Selective Serotonin Reuptake Inhibitors (SSRIs).

Serotonin is a neurotransmitter (a chemical that sends messages between cells, through the nervous system) linked primarily with mood, desire, appetite, memory and sleep.  It is found in the stomach, released by tryptophan found in foods such as cheese, nuts and red meatLow levels of serotonin are thought to be linked with anxiety and depression.

Serotonin is usually reabsorbed by the nerve cells, a process referred to as ‘reuptake’The purpose of an SSRI is to block this reuptake, which means more serotonin travelling throughout the body.  Examples of commonly prescribed SSRIs include Fluoxetine (Prozac) and Sertraline (Zoloft), both of which are often given to patients who suffer from depression, Obsessive-Compulsive Disorder and/or Tourette’s Syndrome.

In my case, I took Sertraline for more than two years.  You can read the full list of warnings contained in the packet here.  A key paragraph to which I would draw your attention is this:

In clinical trials in children and adolescents aged 6 to 17 years with major depressive disorder, the incidence of discontinuation due to side effects was reported at 9%; the most common reactions leading to discontinuation were agitation, suicidal ideation, hyperkinesia, suicide attempt, and aggravated depression.[Ref] [Emphasis added]

With this in mind, I would like to share my personal story.

My SSRI Nightmare

I started on Sertraline at age 15, after Haldol and Clonidine failed me (see last week’s article for that story).  I was initially placed on a fairly low dosage.  Miracle of miracles, it worked for me!  Then, after a few weeks, my symptoms returned in full force.  My doctor’s solution was to increase the dosage.  Once again, my tics eased – only to return with a vengeance.  My doctor’s solution was…to increase the dosage.  This happened so many times that eventually I was taking 250mg a day just to feel as bad as I had before I started taking the drug.

What my doctor did not think to explain to me was that I was caught in what is called a negative feedback loop.  Essentially, my brain had a conversation with the Sertraline that went a little something like this…

My Brain: What’s all this new serotonin doing in her body?  I’d better stop making so much in the first place, so there isn’t too much in there.

Sertraline: Hang on.  I was trying to increase the serotonin.  We’re going to have to pump more of me in there, to do the job.

My Brain: Wait, wait, wait.  There’s more serotonin again!  I’m going to have to make even less, now, before this gets out of control.

…and so on, until hardly any serotonin was left in my body for the Sertraline to keep moving.

In the meantime, having that drug in my system at such high levels started affecting me in other ways.  See, Sertraline is also a dopamine reuptake inhibitor, meaning that at very high doses, your body is flooded with excess dopamine.  Symptoms of this condition include ‘suspicious personality, paranoia and withdrawal from social situations’.  Amphetamines and cocaine have long been known to lead to dopamine build-up and, consequently, ‘drug-induced psychosis or schizophrenia’.  Excess dopamine is also linked to impulsive behaviour and difficulty with concentration.

In my case, I lost all interest in just about everything – my hobbies, my goals, my friends, myself.  I started laughing inappropriately at sad things people told me, and weeping at absolutely nothing.  Then I developed ‘alien control symptoms’.  I was convinced there was another entity in my brain, controlling my actions and speech.  I felt disconnected from my own body.  I might be telling someone about a song I loved, when I would float out of my body and hover just outside, watching and listening to myself talk.  I would think, Is that really me?  Am I really saying that?  Do I really care about any of that?  Then I would slam back into my body mid-sentence and stop, startled, confused, unsure what I was about to say, wondering how I had managed to talk all that time without being conscious of it.

READ MORE  Tourette's: Bullying & Teachers

Eventually, I decided I was the intruder in my head.  I had somehow been implanted in someone else’s body and I didn’t belong.  All the people I thought were my friends weren’t mine at all; they were that other girl’s friends.  My family were not my own; they were hers.  So, it was only natural that I should disconnect from them, sink deeper and deeper into self-imposed isolation.  Moreover, those interests were not mine; they were hers.  So, it was sensible that I should quit everything.

Then I went one step further.  I originally grew up in Arizona, but moved to England at the age of 16, halfway through my Sertraline journey.  When I was around 17 years old, I started thinking Arizona had been a dream.  None of the friends I’d left behind had ever existed; I’d imagined everything and everyone.  It was just one more reason not to talk to any of them.  It was dangerous to persist in the delusion.  That I only ever managed to speak to them online anyway reinforced the delusion.  How could I be certain they were real if I never saw them or heard their voices?  Talking to them on the telephone didn’t dispel this idea.  After we hung up, I worried I’d imagined the conversation.  I couldn’t trust my own memories.

I cried for hours at a time, every single day.  I’d even say I became chemically addicted to the endorphins crying produced.  I had terrible insomnia.  When I did sleep, I was plagued with nightmares.  One night, I cried so long that I felt nothing but an empty cavity in my chest.  I remember sitting on my bed in the dark, around 4am, begging who knows who to fill that cavity and make me better.  Finally, I felt so dead inside that I spent every day intensely visualising killing myself in a variety of awful ways.  It didn’t even scare me.  It felt like it would be easy.  And I can’t count the number of times I simply left my body and then ‘came to’ and realised I’d been spacing out for hours and couldn’t account for the lost time.

Breaking Free

How did I get out of this mess?  Fortuitously, I happened to have been taking a psychology class.  One day, we had to read a section out of the textbook about schizophrenia.  I had just enough remaining self-awareness to realise I was suffering from a worrying number of symptoms on the list.  I also read a blurb about scientists inducing schizophrenia in patients by giving them similar drugs to the one I was on.

I then read through the warnings leaflet that came with the drug and found that it could cause infertility (I hadn’t had a period in seven months), depression, anxiety and ‘suicidal ideation’ – bizarre in a drug prescribed to treat depression and anxiety disorders.  In that moment, I decided to wean myself off the drug.  I reached out to my doctor for support, but he failed to respond.  He’s now a bigwig in the field of Parkinson’s disease, up in Maryland, US.  I think he was more interested in fame than helping me.  The local doctor in England told me such high doses were illegal over here (though I cannot confirm whether this remains the case today).

Coming off that drug wasn’t the end of the ordeal.  I then suffered years of post-traumatic stress – because it isn’t easy to spend over two years dissociating from yourself, doubting your ideas and interests are your own.  I had no idea who I was, anymore.  It was years before I could connect with my body again and even recognise myself in a mirror.  I was so scared of the world that I literally did not leave the house for a straight year, and then suffered panic attacks every time I went out in public for I don’t know how many years.  I had no idea how to talk to people.  I had irrevocably ruined many relationships.  Unhelpfully, when I told my father about my experience, he – being a Vaishnav (Hare Krishna) and a strong believer that ‘we are not the body’ – told me I’d experienced truth.  I had tapped into the true soul beneath the material shell of opinions and ego.  Religious conditioning left me thinking perhaps he was right.  It was years before I could let go of this notion, accept the damage that had been done to me, and move on.  In fact, I don’t think I fully healed until I was maybe in my late 20s.  Even now, I can look back on the event and see that it shaped who I am today.

READ MORE  The Terror of Tourette's

Looking Back

I have since read so many testimonials from other patients reporting a similar experience; it’s how I learned the word ‘dissociation’.  I have also read that such drugs shouldn’t be given to people who struggle with mood disorders such as bipolar disorder (like me), who are already at risk of psychosis (defined as any form of inability to distinguish reality from imagination).  My doctor never diagnosed my mood disorder, never established my full health profile, never did his due diligence prior to writing the prescription.  As previously mentioned, it’s even noted in the Sertraline warnings leaflet that 9% of young patients discontinue use due to similar reactions.  That might not sound like a large number, but it really is.

A quick online search will show that there have also been numerous class action lawsuits brought against the manufacturers of such drugs, accusing them of inducing violent behaviour in patients.  I recall once reading SSRIs have even been linked to a number of American high school shootings, including Columbine.  It could be argued that the shooters were that depressed to begin with, hence they were taking medication.  On the other hand, we have no way of knowing whether they had reached such a low prior to taking the drugs.  That was the crux of the controversy in the news.

Yet SSRIs have only increased in popularity for the treatment of depression, anxiety and Tourette’s Syndrome.  Television advertising in the US has surely contributed to this, and I suppose the other 91% of patients have found some relief (at much lower doses) – and that’s wonderful.  But if you try one of these drugs and start falling into that negative feedback loop, I beg you to be careful.

Closing Thoughts

What I have tried to do in this article is not tell you drugs are bad, or that they are a miracle cure, but that each of us is unique and will respond to each drug in a unique way.  What matters is that you stay in tune with your body.  Listen to it.  In my case, my body was trying desperately to tell me it didn’t want the drugs.  It just took me a long time to get the message.  Yet I’ve spoken to some people who have found relief from taking the very drugs that caused me such trauma.

Always remember, though, that these drugs are designed to manipulate your neurochemical system and therefore your hormonal / mood system.  In a sense, they are mind-altering substances and should not be taken lightly.  They might affect you in ways that you can live with, especially if they help with your condition.  But if they change you too much, seek help and look for other options.

Next time, we’ll look at alternative treatments, including those as simple as vitamin and diet regimes to the most extreme, like deep brain stimulation.  Be sure to subscribe so you don’t miss out – and if you have a story you’d like to share about your experience with one of the drugs mentioned in this article (or one not discussed), please either leave a comment below, or send us your story to share on the website by clicking the ‘Contact’ tab above.

Finally, if you’d like to read a detailed depiction of what Tourette’s is really like to live with, please read my short story The Passenger, available on Amazon Kindle and the Kindle phone/tablet app.  US Readers  UK Readers

Until next time….

Vrinda Pendred - Editor & Founder of Conditional Publications

Vrinda Pendred is a graduate of English with Creative Writing at Brunel University. She completed work experience with Random House and proofread for Mandala Publishing. She is married with two children and lives in Hertfordshire, England, where she does freelance editing and proofreading. She is also a writer, and you can learn more about her personal work here.

Vrinda has five neurological conditions: Tourette’s Syndrome, Obsessive-Compulsive Disorder, ADHD, High-Functioning Autism and bipolar disorder.  In 2010, she founded Conditional Publications with the intention of providing a creative outlet for people, and (hopefully) changing a few minds out there about what neurological disorders really are – including not just the limitations, pain or frustration, but also the more positive, beneficial ‘symptoms’ of these strange conditions.

She made three contributions to Conditional Publications’ debut release Check Mates: A Collection of Fiction, Poetry and Artwork about Obsessive-Compulsive Disorder, by People with OCD. Since then, she has released a novel entitled The Ladderinspired by her personal struggle with bipolar disorder, as well as a number of short stories, and a YA sci-fi /fantasy series called The Wisdom, all available for purchase from Amazon.

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