Tourette's - An Insider View

Editor & Founder of Conditional Publications, Vrinda Pendred, discusses key medications typically prescribed to treat Tourette’s Syndrome – and her personal experiences 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.

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

As promised, today we will discuss some of the treatments for Tourette’s Syndrome.  This subject is so vast that I’ve had to break it down into multiple parts.  The focus of this and next week’s articles is prescription medication.

Important Points to Bear in Mind

Before I continue, I need to be clear: there is no cure for Tourette’s Syndrome.  All treatments discussed in this and future articles simply aim to provide some degree of relief.

I also need to state that each of us is unique, with a unique body, a unique nervous system, and a unique state of health.  One drug might work perfectly for Person A at low doses, while Person B may require a much higher dose to feel any effect, and that might lead to nasty side effects.  Alternatively, Person A may suffer from certain health conditions incompatible with that drug, while Person B may not have such health problems and the drug might be their miracle cure.  Furthermore, medications might affect men in a different way from women, due to our different hormonal structures.

Therefore, when considering a prescription medication, you must 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.  If your doctor is unwilling to discuss the matter with you fully, provide you with all the answers and information you need to feel safe and secure, and simply tells you to keep increasing the dosage without further consideration of your individual health issues, find a new doctor.  Trust me; I learned this the hard way.  When things went horribly wrong for me, my doctor was not there.

Finally, in this and future articles, I am not advocating or condemning any particular method of treatment.  I can only share my personal experiences, and some insights gained from others I’ve known or testimonials I’ve read.  If you have Tourette’s, you need to find your own way, what works for you.  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.

So, without further ado….

Medications Designed to Lower Dopamine Levels

Dopamine is a neurotransmitter (a chemical that sends messages between cells, through the nervous system) linked with emotions, motivation, adrenaline, movement, memory, addiction, and sensations of pleasure and pain.  Too little can result in lack of drive, both emotionally and physically.  Key to the subject of Tourette’s Syndrome is that low dopamine can reduce movement.

For this reason, one method of treating Tourette’s is to prescribe drugs designed to reduce or block dopamine in the body.  These include Fluphenazine, Haloperidol (also known as Haldol), Pimozide (Orap) and Tetrabenazine (Xenazine) – also prescribed as anti-psychotics.  Some of the side effects associated with such drugs are weight gain, involuntary repetitive movements and severe depression.  That’s right: drugs prescribed to help reduce Tourette’s Syndrome – a disorder characterised by involuntary repetitive movements and sounds – could actually cause involuntary repetitive movements.

I can’t experientially comment on all these drugs, but I did take Haldol for about two weeks.  I was 15 years old and had only recently begun to understand my condition and ask for help.  It was the first drug my neurologist prescribed, and the original Tourette’s treatment, going back decades.  Haldol gave me the single worst nightmare I ever had in my life.  I won’t describe it here, suffice to say it was violent enough to make Saw look like a children’s film.  A quick online search will tell you I’m not the only one to report this disturbing side effect, although it is apparently ‘uncommon’.  That said, there is a lengthy list of other equally worrying side effects associated with Haldol, including heart problems, seizures, hallucinations, and even death.  Furthermore, it can cause other permanent and life-threatening health problems, such as neuroleptic malignant syndrome.  There are also numerous conditions under which you should not take the medication, such as if you suffer from Parkinson’s, diabetes or epilepsy.  (A full copy of the medication leaflet can be found here.)

READ MORE  We've Come a Long Way, Baby

Beyond all that, even if you don’t suffer one of the more extreme side effects of these types of medication, remember their purpose is to lower dopamine levels in the brain.  That doesn’t just mean potentially reducing the frequency of tics; it means reducing drive, interest, passion.  In my case, I felt flat while taking Haldol, like I no longer cared about any of my hobbies or ambitions.

Something I never hear anyone talk about is the effect of reduced dopamine in women – particularly developing girls taking the medication as teenagers.  Dopamine and oestrogen have been repeatedly demonstrated to be linked; reducing one affects the other.  And too little oestrogen in younger women means things like lack of / irregular menstruation (and, therefore, infertility), delayed development (no doubt due to the connection between dopamine and the human growth hormone), hot flashes and night sweats (as in menopause), insomnia, lack of desire, forgetfulness, depression, and even bone loss, eventually leading to osteoporosis.  Therefore, such medications might not be appropriate for female patients – though your doctor may not take this into consideration (as mine did not).

Equally, dopamine is connected to testosterone; low dopamine means low testosterone, which can cause weakness and infertility in men.

Botulinum (Botox) Injections

What?  Plastic surgery for Tourette’s Syndrome?  It might surprise you to know that Botox was first invented for the purpose of treating involuntary muscle spasms – particularly for a neurological condition called dystonia.  This terrible condition is especially common with musicians.  Essentially, when you repeatedly hold your body in a certain position (for example, if you play the violin and you always have your head cricked to the side and your chin tucked downward), your brain can get confused and decide that’s your body’s natural pose.  It will then freeze the body in that position even when you’re not performing the action.

My father has dystonia.  He was (I suppose he still technically is) a drummer and the dystonia affects his hands.  It is an incredibly painful debilitating condition that forced him to renounce his life’s passion – though sometimes he tried to find a way to do it anyway, which always reminded me of Beethoven sawing the legs off his piano, slamming the keys really hard and pressing his ear to the floor to listen to the vibrations, so he could continue to compose after he’d gone deaf.

Some of my saddest childhood memories revolve around not just my father’s condition, but his search for a cure.  He was part of the earliest experimental Botox treatments, in Maryland, US, back in the late 1980s.  The trouble with Botox is that it didn’t just move his hands back into their normal resting position; it froze them like that, meaning he couldn’t move them enough to open the microwave door.  And it lasted weeks.  He was a cripple from those injections – yet 20 years later, he was still trying them again, desperate for a cure.  I cannot personally imagine how such injections could ever help Tourette’s symptoms.

Central Adrenergic Inhibitors

Some medications prescribed to treat high blood pressure, such as Clonidine (Catapres) and Guanfacine (Tenex), are thought to help with impulse control problems.  As discussed in a previous article, one theory behind the cause of Tourette’s Syndrome relates to damage to the basal ganglia, the part of the brain that deals with impulse control.  One of the side effects of these types of drugs is sleepiness.  In my case, Clonidine made me narcoleptic.  I recall being in tenth grade math class and falling unconscious at my desk without warning.  The fire alarm went off and I woke suddenly, screaming in the middle of class like a crazy person.  My mother telephoned my math teacher to explain I was trialling a new medication that was making me drop off.  My teacher’s dry reply was, ‘I thought she was falling asleep in class more than usual.’  (Nice one, Mr Meyer.)

READ MORE  The Causes & Triggers of Tourette’s Syndrome

Another afternoon, I was watching an episode of Bill Nye the Science Guy about vaccinations, when my mother asked if I’d like to come with her on some errands – something I used to love, because we’d drive around town with the radio turned up loud and sing along together.  I got in the car with her and suddenly started screaming at her to get away from me.  I had fallen unconscious, had a dream inspired by the television programme I’d been watching earlier, and woken physically before I’d woken mentally, leading to a waking dream state.  In other words, I saw the dream happening in real life and was convinced my mother was a stranger attacking me with needles.  When she finally got me under control, I asked if we were going to go on her errands.  She looked at me oddly and told me we’d already gone all over town.  I’d slept through the journey and we were sitting in our driveway again.  I’d only woken up because she’d shaken me awake, to bring me inside.  Needless to say, we went back to the doctor and got me off that medication.

Once again, there are a host of potential side effects associated with these medications, all of which can be read online here.  Just do a quick search for the name of the drug and you can read the full medication leaflet.

Anti-Seizure Medications

Apparently, some people with Tourette’s syndrome find relief from Topiramate (Topamax), which is a drug used to treat epilepsy.  I have no experience with this drug myself, but a quick search for the warnings leaflet online tells us that some of the ‘common’ side effects include menstrual changes, blurred vision, confusion, and ‘continuous, uncontrolled back-and-forth or rolling eye movements’ – a bit concerning, bearing in mind the drug is being prescribed to reduce largely uncontrolled movements.  However, as mentioned, I cannot comment further about this particular medication.

Closing Thoughts

Next time, we’ll talk about the use of anti-depressants in treating Tourette’s Syndrome.  It’s a lengthy topic, and one with which I have much personal experience, so it deserves an article all to itself.

In the meantime, 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.  Please also be sure to subscribe so you don’t miss out on next week’s article.

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.

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes:

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>