Dr. Kirsten R. Müller-Vahl is a Professor of Psychiatry at the Department of Psychiatry, Socialpsychiatry and Psychotherapy at the Hannover Medical School (MHH), Germany. She is a specialist in both neurology and adult psychiatry. From 1997 to 2003 she was a grant holder of the German government (Dorothea-Erxleben-Stipendium) for scientific research related to Tourette syndrome (TS). During the last 20 years she has investigated more than 1500 patients with TS (children and adults) and is the head of the Tourette-Syndrome outpatient department (since 1995). From, 2012-2016 she was the vice president of the European Society of the study of Tourette syndrome (ESSTS). She was a German representative of the COST Action BM0905 (“European Network for the Study of Gilles de la Tourette Syndrome”). She is a full partner and a working group leader in the EU funded programmes “European Multicentre Tics in Children Studies” (EMTICS) and “TS-EUROTRAIN-Interdisciplinary training network for Tourette Syndrome”. She is a member of the Medical Advisory Board of the Tourette Association of America (TAA) and an author of the guidelines for the treatment of TS of both ESSTS and the American Academy of Neurology. Since 1998, she is a member and 2. Chairwoman of the Association for Cannabinoid Medicines (ACM). She was a founding member of the International Association for Cannabinoid Medicines (IACM) and from 2007-2009 1. Chairwoman and since 2015 vice president of the IACM.
Against this background, new treatment strategies are urgently needed for this group of patients. Ideally, these new treatments (i) are associated with lesser side effects compared to available substances, (ii) result in a better improvement – or even a complete remission – of tics, (iii) are also effective in otherwise treatment resistant and severely affected patients, and (iv) improve not only tics, but the whole spectrum of the disease including different psychiatric symptoms such as ADHD, OCB, and depression.
Tic disorders and Tourette syndrome
In a retrospective study, we analyzed data from 98 patients with TS (mean age = 28.2 (+13.7) years) treated with different cannabis-based medications in our specialized Tourette outpatient clinic at Hannover Medical School, Hannover, Germany (unpublished data). Most of our patients used illegal cannabis (from different sources) (71%) for the treatment of TS. Only 37% of patients were treated with tetrahydrocannabinol (THC, dronabinol, the most psychoactive ingredient in cannabis), 32% received treatment with nabiximols (Sativex®, a cannabis extract standardized for THC and cannabidiol (CBD) at a 1:1 ratio), and 22% had access to (standardized) medicinal cannabis (from a pharmacy). The high percentage of illegal cannabis use – compared to the low percentage of treatments with medicinal cannabis – is related to the fact that in Germany only in March 2017 national laws changed and only since that time cannabis can be prescribed by medical doctors. Before March 2017, treatment with medical cannabis was restricted to a small group of patients, who have had received a specific permission by the German federal opium agency. However, when asking patients about the preferred kind of cannabis-based medication (if available), interestingly, 2/3 of patients answered that they would prefer inhaled medicinal cannabis (from a pharmacy) over other cannabis-based medications. In line with this preferred choice, medicinal cannabis was reported as more effective in reducing tics than other cannabis-based medications (in descending order): in 100% (N=21) of patients using medicinal cannabis, in 90% (=67) using illegal cannabis, in 77% (N=35) using THC (dronabinol), and in 76% (N=33) using nabiximols (Sativex®) (multiple answers possible). Accordingly, patients also assessed cannabis (both from illegal sources and medicinal cannabis from a pharmacy) more effective than nabiximols (Sativex®) and THC (dronabinol) in reducing psychiatric symptoms including OCB, ADHD, depression, anxiety disorders, self-injurious behavior, rage attacks, and sleeping problems. Altogether, patients assessed cannabis superior compared to both nabiximols (Sativex®) and THC (dronabinol).
TS is a neurodevelopmental disorder and therefore age at onset is in childhood – most typically at age 6 to 8 years. The vast majority of patients with TS, however, suffer not only from motor and vocal tics, but also from one or more behavioral problems such as attention deficit/hyperactivity disorder (ADHD), obsessive-compulsive behavior (OCB), anxiety, depression, rage attacks, self-injurious behavior, sleeping disorder, but also leaning problems and autism spectrum disorder. Therefore, in many patients quality of life is substantially impaired.
In line with this data, only recently researchers from Canada reported results from a retrospective evaluation on the effectiveness and tolerability of cannabis in 19 adults with TS. On average, they found a tic reduction of 60%, and 95% of patients were rated as at least “much improved.” In several patients, in addition, an improvement of psychiatric problems was reported. Cannabis was generally well tolerated and only mild side effects occurred such as decreased concentration, motivation and short-term memory, anxiety, increased appetite, sedation, and dry mouth and eyes.
In late October of 2016, my 7-year-old son, Lincoln, was diagnosed with Transient Tic Disorder. It’s fairly easy to say that this moment shook me like I’ve never been shook before. I have never been so scared in my life! I’m sure all fathers out there have experienced the hopelessness of having a sick child. It’s excruciating and overwhelming.
The episodes would last between 5 and 45 minutes. It was painful to watch. Especially, when he’d come out of the episodes with no recollection of what he’d just experienced. He could not hear us calling his name or feel us holding him while he endured these episodes. He’d snap out of them confused, exhausted and in physical pain.
Cannabinoid (CBD) oil has been a godsend since I found out my son was diagnosed with a tic disorder.
During this entire process, we drastically altered the family diet, eliminating dairy, white sugar and taking meat out of the house, except for one meal on the weekends as sort of a cheat day. We also started a daily essential oil regimen, using doTERRA oils. The Frankincense oil was a major support . Overall, we saw some healthy results and improvement from these changes, especially regarding his ability to sleep soundly.
Around late August, I’d noticed Lincoln had started this heavy, exaggerated blinking. I didn’t think anything of it, initially, as I used to do the same thing as a kid…and still do occasionally. Back in the day, my parents thought it was some strange habit I’d picked up. Within a few weeks, Lincoln’s blinks had increased in rate and exertion. He’d also started rolling his eyes in really pronounced ways…sometimes so hard that he’d turn his head to the side.
By this time, I’d already done extensive research on CBD oils and the benefits of medicinal Cannabis. I was strong in my belief that adding the CBD oil would be the completion of our treatment regimen. So, after some convincing of his mom, I ordered the best CBD oil I found during my research. I’m so elated to learn that I was correct.
‘The findings are really surprising as the cannabis based THC product used seems to have helped him focus and socialise which is a significant success for children with Tourette’s.
She said it was the first evidence to suggest cannabis-based medicines could help children with severe Tourette’s.
The boy’s dose of THC was gradually increased over the space of two months, from 0.7mg to 3.6mg daily, according to the team at the Medical University of Warsaw.
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It usually starts during childhood and continues into adulthood. Tics can be either be vocal, such as swearing, or physical, such as headshaking.
In hope of combating his tics, he was given a cocktail of drugs and two forms of therapy – but the methods all proved unsuccessful.
Medics then started to supplement daily doses of risperidone and guanfacine, a drug used to combat the boy’s ADHD, with THC.
This dropped down to 31 after two months, before being slashed even further to just 28 after four months of treatment.