Hope for DystoniaPsilocybin: New Hope for Dystonia Patients?
Updated: May 8
Is psilocybin from psychedelic (magic) mushrooms a potential key in promoting neuroplasticity for dystonia recovery?
Psilocybe cubensis photographed in Xalapa, Veracruz, Mexico. Credit: https://mushroomobserver.org/370106.
In a high-rise building in Shanghai, Ran takes a deep breath as she prepares to step outside of the elevator. Her neck is shaking uncontrollably, and she’s filled with shame at the thought of her co-workers seeing her in that state. As she briskly makes her way towards her cubicle, she is stopped by her boss: “Hey Ran, you remember I’m still waiting for that report, right?” Ran opens her mouth and begins to utter a response, but her throat is tight as a knot, and no sounds come out. “It’s alright, just send it to me, OK?” Humiliated and tearful, Ran takes a seat and ponders quitting her job forever.
Galit has a different problem. She’s having a festive lunch with her family and is hating every minute of it. Since the birth of her second child, the muscles in her pelvis have been spasming violently, to the point that she’s been having an increasingly hard time using the bathroom. As she feigns interest in her meal, she wonders how many days will pass before she’ll be able to relax her muscles enough to have a bowel movement. She ends up leaving most of her food on the plate.
François is very familiar with those brutal spasms: since a dentist filed down the teeth on the left side of his mouth, that entire side of his face has been stuck in an excruciatingly painful contraction that has left him bedridden and suicidal.
Phew, quite a heavy cross to bear, isn’t it?
What these three otherwise healthy individuals have in common is a vague diagnosis: dystonia. Dystonia is commonly thought of as a neurological disorder that causes involuntary muscle movements and contractions. It is estimated to affect as many as 50,000 Canadians. The treatment of choice as of today? Repeated and often ineffective injections of botulinum toxin in the muscles that are spasming: a symptom-patch approach at best, a slow sabotage of a patient’s recovery chances at worst. No attempt is made to understand the reasons why the disorder develops in each person, much less to address the root causes of it.
Fortunately, a new understanding of the disorder is emerging, and it is based on a revolutionary idea: in most cases, dystonia is a consequence of maladaptive plasticity. In other words, the brain of predisposed individuals can adopt dysfunctional patterns in order to adapt to injury, faulty anatomy, or trauma. For example, someone with a left open bite (someone whose teeth don’t touch on that side) uses the right side of his mouth to chew and speak; over the years, the brain ‘forgets’ the underused left side and begins to develop painful spasms in the overused right one.
I was that someone for over twelve years: my life has been shaped by this faulty pattern my brain adopted. At its worst, my dystonia prevented me from chewing solid food and speaking for more than a few minutes at a time. But here’s the exciting, hopeful news: the brain can substitute a faulty, painful pattern with a healthy, functional one. This ability of the brain to create new connections and learn new patterns is called neuroplasticity.
If this sounds familiar to you, psychedelically-inclined reader, there is good reason: research has shown that psychedelic substances can significantly increase neuroplasticity. Allow me to tweak a famous analogy to illustrate this point: our brains are like snow-covered mountains, and our thoughts and movements are like sleds going downhill. The more we repeat a habit, a thought or a movement, the deeper the grooves in the snow become, and the harder it is for the sleds to leave those habitual pathways. Psychedelics are like a new coating of fresh snow, which allows the sleds to escape the usual trails and create new ones instead. Once these new pathways are available, they can be integrated into default patterns, so that the sleds will be automatically drawn to them in the future.
If you see where this is going, so did I a while back. If dystonia is a maladaptive plasticity problem and psychedelics increase neuroplasticity, then psychedelics can be a crucial part of dystonia recovery. They can help the dystonic brain substitute dysfunctional patterns with functional ones.
This realization was the beginning of a new life for me: after innumerable days spent in bed in excruciating pain, essentially waiting to die, I began to rewire my nervous system and slowly regain the neurophysiological function I had lost. I can now chew any solid food, speak for hours at a time, and hike for entire days - all of which would have been unthinkable a few years back.
As I progressed in my own recovery with the help of psilocybin mushrooms, it became clear to me how wide the gap is between the standard, reductionist treatment for dystonia and the one that is needed. As is often the case, psychedelics force us to think in a more holistic, interconnected way. When it comes to dystonia, they helped me shed light on the incredibly complex interplay of emotional trauma, memories, movement patterns, and physical inputs into the nervous system provided by injuries or anatomical anomalies.
Sure, the dystonic spasms in Galit’s pelvis can be traced back to the awful scarring she developed following a complicated birth; but the emotional trauma she endured during those interminable hours is also a key reason why her sympathetic nervous system constantly contracts her muscles. In my own case, the asymmetry in my occlusion was made worse by a series of medical errors, but I cannot ignore the fact that my fear of speaking my truth contributed to a complex compensatory pattern that involved biting my tongue to give my jaw some stability.
Dystonia is a whole-person disorder, and it requires a whole-person solution. I have made it my mission to help others find such a solution through the coaching I offer at Hope for Dystonia. Through a combination of mindfulness, self-compassion and gentle sensory stimulation, I help clients build the skills they need to reconnect with the underused parts of their nervous system and let go of spasms. We then employ a variety of techniques to stimulate neuroplasticity, with or without psilocybin. When clients are able to access psilocybin legally (often by traveling), the brain’s learning process becomes significantly faster.
Wouldn’t it be nice if that option was easily, safely and legally accessible to all?
Imagine a future in which people suffering from dystonia and other neurophysiological disorders are able to access tailored psilocybin therapy. This would look similar to psilocybin-assisted psychotherapy, but would have a more interdisciplinary focus, embodying a new, holistic medical paradigm.
Picture the following: you suffer from cervical dystonia, and your neck keeps pulling your head towards your right shoulder. Because of this, you had to quit playing tennis, and you sorely miss those endorphin-filled hours with your friends; you have also taken a step back at work because you can’t deal with the excessive attention. You’ve all but given up on dating. Your mind is stuck in a cycle of shame and anxiety, and you are desperate for a way out.
You decide to visit a clinic that specializes in psilocybin-assisted neurophysiological recovery, and are assigned to a team of professionals from a variety of disciplines.
Your recovery process begins with a 360-degree assessment of the state of your entire nervous system: your ‘mental health’ (what traumas have you suffered? What triggers your anxiety? What repetitive thought patterns are you unable to escape?), your motor skills (what muscles are you able to use? Which ones are spasming? Which ones lack muscle tone?), and your autonomic function (are any of your muscles stuck in a contracted “fight-flight-freeze” pattern? How is your digestion? Is one side of the body normally warmer than the other?).
A recovery plan is then devised to help improve all aspects of your nervous system’s health. This is very much an active learning process, rather than a passive treatment: you learn to use once again the muscles and nerves that your brain has been avoiding; you recognize habitual movement patterns that are contributing to your dystonia and substitute them with more functional ones; you learn to identify your thought patterns and gain practical skills to help rewire your brain away from anxiety and towards a more intentional and compassionate inner dialogue. Throughout the process, a regimen of frequent psilocybin microdosing and more sporadic higher-dosage sessions helps your brain create the new connections it needs.
Over the course of a few weeks, you notice that you are able to move differently. The spasm on the right side of your neck isn’t as strong, and the left side of your neck is more and more available. Your neck isn’t as crooked anymore. When anxious thoughts occur, you are better able to observe them before they escalate into a crisis. You have learned that your anxious thoughts are very real, but they’re not necessarily true. There is an increasing sense of ease in your life.
A few months later, there are no more visible signs of your dystonia. Spin classes have taken the place of tennis games: you learned that the symmetrical action helps you maintain harmony in your nervous system. You notice you’ve become more assertive at work, since you’re not trying to go unnoticed during meetings for fear of your colleagues’ looks of commiseration. The future seems filled with potential, and you feel grateful for getting a second chance at living your life fully.
This is not a pipe dream: it can become the reality for the hundreds of thousands who suffer from dystonia and who have given up on the hope to get their lives back.
For now, however, it is important to remember that there is no scientific evidence that psilocybin helps with neurophysiological recovery of this kind - it just hasn’t been studied, so the scenarios I depict are only based on anecdotal reports and my imagination of a possible future. Consequently, please don’t take anything in this article to be medical advice; don’t seek out substances that are illegal where you live; and don’t take any drugs without competent medical guidance.
That being said, many are interested in exploring these potential healing modalities, yet cannot access psilocybin legally in their home countries or cannot afford to travel frequently to jurisdictions where this is possible. A potential avenue towards progress and healing is cut off for them as a consequence. They deserve better - first and foremost targeted research on psilocybin for dystonia, in addition to legal reform. I have made progress in finding allies in academia to help with this project, but I am actively looking for more. If you are interested or know someone who could help make this kind of study happen, or are just curious to learn more, please write to me at hello@hopefordystonia.com.
If you are interested to learn more about how mushrooms can be incorporated in your nervous system recovery journey, book a free consultation here.
Warmly,
Federico
Hope for Dystonia
Disclaimer: nothing in this article should be seen as an invitation or encouragement to engage in illegal behavior. The content of this article should not be construed as medical advice. Hope for Dystonia is a coaching service, not a medical treatment, and as such is not intended to diagnose, treat or cure any disease or condition.