Editor and Founder Vrinda Pendred discusses what it’s like to be a woman with Tourette’s Syndrome, riding the hormonal roller coaster
Welcome back to this series on Tourette’s Syndrome. So far, we have discussed what Tourette’s is, causes and triggers, medications (including anti-depressants), alternative treatments, such as diet and vitamin regimes, and even more extreme measures, the grief process, being diagnosed, bullying and teachers, surviving adolescence, how Tourette’s affects self-esteem, and being a parent with Tourette’s Syndrome. If you missed any of these articles, please click one of the links above to read them.
Today, I’ll be talking about what it’s like to be a woman with Tourette’s. As you’ll see in this article, this is a subject that does not get nearly as much attention as it deserves. As a woman myself, I think the neurological / medical community needs to put much more work and energy into this area to improve understanding and support. For now, the most I can offer is a starting piece to get the conversation going.
Monthly Cycles
I have previous explained how dopamine is a key component in learning, memory, concentration, mood stability and motor control. Too little dopamine and you can become moody, unfocused, unsettled, depressed, disinterested in life or, in extreme cases, catatonic. I have also discussed how dopamine goes hand in hand with serotonin, which plays a key role in mood regulation, emotions, sleep and appetite. Low serotonin levels are linked with eating disorders, loneliness, depression and self-harm – not to mention insomnia, panic attacks, anxiety, obesity, OCD, digestive problems and pain. This is especially hard on girls, as serotonin and dopamine are closely linked with oestrogen, which rises and falls every month, right through to menopause.
During a typical menstrual cycle, oestrogen levels rise twice and fall twice: they rise in the build-up to ovulation, then drop off sharply before rising again a few days later, and falling once more in the lead to menstruation. Alongside this, progesterone levels skyrocket after ovulation and then drop off just as dramatically after the egg is released. Speaking from personal experience, this means females with Tourette’s can experience periods of sharp mental acuity, good sleep, healthy appetite, feelings of confidence, and more settled bodies, including relatively minimal tics…alternated with periods of restlessness, insomnia, self-doubt, irregular appetite, and more dramatic tics. Bear in mind this is during a typical cycle. If you have irregular periods due to other underlying medical conditions (or simply stress, which is increasingly common today), the hormonal roller coaster can feel more extreme.
This can be especially hard during adolescence, when you’re trying to work out who you are but identity seems to be fluid; and you’re trying to come to terms with your medical condition, but the severity of your tics seems to change every week. Even now, at 37, I still feel this. I’ve just been on that ride so long that I’ve accepted it – but at 17, it was hard to take. It means I have spent years investigating the myriad ‘solutions’ on the market to address hormonal fluctuations, including oestrogen cream. However, when you read other women’s personal stories (and I believe it is so important to do this), it is quickly apparent that there is no ‘right’ level of oestrogen for all women. It entirely depends upon your individual body chemistry: what helps one woman could have disastrous results for another. I have never personally found a ‘solution’ I have felt comfortable with.
Contraception
I believe it is fair to say that most sexually active women today (in the Western world) will use some form of contraception, most of which are hormonal. Typically, they work by flooding the body with synthetic oestrogen and / or progesterone, to prevent conception. As you can imagine, this will impact upon conditions such as Tourette’s.
If low levels of dopamine and serotonin are connected with Tourette’s, we might predict that such contraception reduces symptoms – although, on the other end of the spectrum, too much dopamine is linked to paranoia, suspicion, aggression, wild mood swings and social withdrawal (symptoms of schizophrenia) – as well as OCD and ADHD. Again, it likely depends upon the individual.
Unfortunately, when conducting a search for this information today, there is absolutely nothing out there. As I said at the beginning of this article, this is a sorely under-investigated subject, and if any neurologists are reading this article, I humbly request that you please consider undertaking such a study, as data is badly needed.
As an aside, the non-hormonal copper coil (intra-uterine device) should not, on the face of it, impact natural oestrogen / neurotransmitter levels. Instead of introducing artificial hormones, the presence of copper in the uterus thickens the uterine wall, which interferes with the movement of sperm and therefore prevents conception. However, this thickening can cause the body to respond hormonally (for example, the coil is known to cause heavy periods – I once woke up so soaked in blood that it had somehow reached head level and drenched my pillow), which means for some women this could interact with tics (not to speak of other biological processes). Again, there appears to be no meaningful published research into this, to date.
Pregnancy
This is an interesting area, as oestrogen levels rise dramatically during the first trimester of pregnancy, and then gradually continue to rise right to the end. Such elevated hormonal levels must then drop off after the birth. If we consider that reduced oestrogen is connected with lower levels of dopamine and serotonin, it is unsurprising that so many women struggle with postpartum depression and anxiety (and this is before we even consider the hard physical work the woman has just undertaken, and the work she must continue doing now that the baby is born).
Again, there is just not enough research into this area, in relation to Tourette’s. However, I can share anecdotal evidence: with both my boys, my tics seemed to vanish by the end of each pregnancy, and they returned in full force after the birth (worse than they had been since I was a teenager, even) – along with extreme OCD and low mood. This was compounded by my time spent breastfeeding, as oestrogen levels are generally lower while feeding. I know some women take to pregnancy and breastfeeding like a duck to water, but this was not me. I found that whole time indescribably difficult and only truly enjoyed motherhood once breastfeeding was behind me. There were times during the first few months of my sons’ lives when I had to hand them over to my husband because I was in danger of pressing in the babies’ skulls with my finger tics. As I discussed in the previous article, this had emotional repercussions, as well as physical. With my second child, I was mentally prepared for this. With the first, I had no warning, no frame of reference, and it was devastating and terrifying.
Menopause
I have long had a great fear of menopause – purely due to my medical conditions. The whole point of menopause is a gradual and permanent reduction of oestrogen and progesterone. It does not happen in one steady fall, rather in stages, until eventually your hormone levels flatline and should never rise again.
We all have rather unflattering, unsupportive ideas of menopausal women – of them being moody, irrational, forgetful, and so on. In many ways, it can replicate symptoms of ADHD. Again, there is a frightful lack of research into the interaction between menopause and Tourette’s. A quick online search predominantly brings you to women’s personal blogs about the experience, but this too is limited. However, we can make an educated guess that tics must worsen (or perhaps rise and fall and rise and fall again) during this time. My hope is that by the time one’s hormonal levels stabilise, so too do the tics.
I would be deeply interested to hear other women’s experiences with this. However, even as recently as my own childhood, Tourette’s was a largely misunderstood condition with a low diagnosis rate, which leads me to guess that we might not hear such stories until my own generation goes through the menopause ourselves and we begin to speak out.
Online searches do produce results of some women enquiring about the use of HRT (hormone replacement therapy) to treat fluctuating tics during menopause. However, there are many potential side effects of HRT, and so this unlikely to be a solution for all.
Final Thoughts
As warned, I’m afraid I haven’t provided much in the way of hard answers. The purpose of this article is mainly to open up discussion on a much-ignored subject that I feel quite passionately about.
I also invite everyone to be supportive and understanding of the girls / women in their lives who are struggling with Tourette’s. Hormonal changes are a fact of life. There is no getting away from them. Perhaps all we can do is remember what our daughter / sister / wife / friend is going through, be there if she wants to speak about it, and support her through it – the way I would hope we would do for anyone with Tourette’s, but acknowledging that for females, that waxing and waning can present itself still more dramatically.
Next time, we’ll be talking about making friends when you have Tourette’s – particularly, the pros and cons of finding other people who have Tourette’s themselves. Please be sure to subscribe to this blog so you don’t miss out.
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 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 Ladder, inspired 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.
