Dystonia, it’s not a Baltic state

It’s not even a place! To be fair, I hadn’t heard of it either, until it literally hit me over the head. Well, hit my basal ganglia to be precise.

So what is dystonia and why has no one heard of it?

Perhaps it’s not as rare as we think. Herman Oppenheim, a German neurologist coined the term in 1911. But even as far back as the 10th century, the Roman Emperor Tiberius Claudius Nero Germanicus with his “shaking head” was recorded as the first dystonic patient.

Characterized by involuntary muscle spasms, dystonia is a progressive neurological movement disorder; and for some it is associated with Parkinson’s Disease (PD). This condition is extremely uncomfortable because it creates postural twisting and involuntary contortions. It can be excruciatingly painful. As an observer, you may not see the twisting, the spasms and the pain. Trying to stay upright when parts of your body and muscles are literally pulling you down is exhausting.

Because of the progressive nature of dystonia and lack of treatment options, it has been labeled the “suicide disease”. The neural mechanisms underlying dystonia are not clear; however, it is the central nervous system that is mostly affected, in particular the basal ganglia and cerebellum. No one really knows, but dystonia may be caused by a mix of environmental, physical and psychological factors related to:

  • basal ganglia damage
  • trauma
  • medication
  • toxins
  • metabolic disorders
  • hereditary factors
  • autoimmunity
  • Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep (PANDAS)

Dystonia affects one or more parts of the body:

  • Cervical dystonia is the most common form that affects the neck;
  • Blespharospasm is the second most common form that affects the muscles of the eyelids;
  • Meige syndrome affects the face, jaw, and tongue;
  • Dysphonia affects the vocal chords;
  • Segmental dystonia affects one side of the body.

Whilst there is no cure or medication to slow the progression of dystonia, I have outlined conventional and unconventional treatment options:

  • Functional neurology is a treatment grounded in the principles of neuroplasticity that focus on the source of the condition, not the symptoms;
  • Biofeedback uses surface electrodes to relax the overactive muscles and to activate the passive muscles;
  • Botulinum toxin is injected into affected muscles;
  • Deep Brain Stimulation (DBS) surgically implanted electrodes are connected to a pulse generator in the part of the brain that controls movement;
  • Epilepsy medication (dystonia is not epilepsy).

So why do I know so much about dystonia? This is just another of my list of conditions that I developed whilst teaching in a tiny, windowless, poorly ventilated, water damaged classroom. Having ingested mycotoxins for 4 years, I began to notice mounting symptoms and an increasing number of health problems.

Incredibly, my body started to physically contort and twist. My sternocleidomastoid muscle (SCM) pulled so strongly that it twisted my neck, and the left side of my body, until my neck was sitting at an angle on my shoulders. In addition to the “pain in my neck” I had chronic pain stemming from my coccyx, tracing my spine up to my scalp. I had continuos chorea movements in my torso. And I could feel the muscle tone in the left side of my body changing rapidly.

I sought help from many neurologists, GPs, chiropractors, physiotherapists, acupuncturists and naturopaths; few had heard of this disorder and those who had were only interested in administering benzodiazepines, epilepsy meds or Botox injections. At the time, I was in too much pain to find a sustainable solution so I succumbed to a barrage of meds as a quick fix. Ironically, taking the meds escalated the pain and symptoms.

Fortunately, I found a reputable brain-balancing clinic in Dallas, Texas: Cerebrum Health Center. I walked into the clinic with fifty plus symptoms, and in just two weeks I walked out pain free with ten symptoms remaining. I was treated by gifted functional neurologists Dr Randall and Dr Brock who practice brain based therapies; they were the ones who could connect all the pieces of the puzzle. They evaluated and treated me holistically and systemically. For several hours each day I was treated with saccades eye movement exercises, vagus nerve stimulation, trigeminal nerve stimulation, intravenous (IV) nutrients and intravenous immunoglobulin (IVIg) which addressed the underlying cause triggered by autoimmunity, (That’s a whole other story).

The most successful treatment for me was the Off Vertical Axis Rotational Device (OVARD). The OVARD stimulates the vestibular system which supports neural activity and strengthens the connections in the brain. I was physically rotated in what looked like a space-ship module, according to my eye movement measurements. After spinning several times a day, the pain and contortions disappeared and the muscle tone in the left side of my body became smooth. Even though I’m still managing symptoms, my neck now sits straight on my shoulders and to this day I’m pain-free.

Dystonia is hard to live with. Not just because of the physical discomfort but because of the lack of understanding surrounding this condition. I hope to bring some awareness to this disabling disorder because many people are suffering tremendously, and there is such little research available.

Functional neurologists are developing cutting edge brain-based therapies that are literally saving lives. And yet there is this enormous divide between these non-invasive therapies and MD treatment plans. MD neurologists do not recognize brain based treatments: they are adamant there are no other treatment options aside from bombarding patients with epilepsy meds and botox. For many, like myself, these medications worsen the condition.

MD neurologists look at the brain as its own entity instead of seeing it as a part of a complex system. Until their treatments are individualized for each person, extended beyond the 15 minute clinical observation session, recognize the plasticity of the brain, and address the root cause by taking a systemic approach, their capacity to support dystonia patients is limited and for some-damaging.

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The beautiful artwork “TWIST” is by my talented artist friend Al Young who knows a thing or two about living with dystonia.

REFERENCES

Brewer, J. H., Thrasher, J. D., & Hooper, D. (2013). Chronic illness associated with mold and mycotoxins: is naso-sinus fungal biofilm the culprit?. Toxins, 6(1), 66–80.

Campbell, A. W., Thrasher, J. D., Gray, M. R., & Vojdani, A. (2004). Mold and mycotoxins: effects on the neurological and immune systems in humans. Advances in Applied Microbiology, 55, 375–408.

Edwards, M. J., Dale, R. C., Church, A. J., Giovannoni, G., & Bhatia, K. P. (2004). A dystonic syndrome associated with anti-basal ganglia antibodies. Journal of Neurology, Neurosurgery & Psychiatry, 75(6), 914–916.

Gordon, K. E. (1993). Tremorgenic encephalopathy: a role of mycotoxins in the production of CNS disease in humans?. Canadian Journal of Neurological Sciences/Journal Canadien des Sciences Neurologiques, 20(03), 237–239.

Leisman, G., Melillo, R., & Carrick, F. R. (2012). Clinical motor and cognitive neurobehavioral relationships in the Basal Ganglia. Basal Ganglia–an integrative view, 1.

Tanabe, L. M., Kim, C. E., Alagem, N., & Dauer, W. T. (2009). Primary dystonia: molecules and mechanisms. Nature Reviews. Neurology, 5(11), 598–609. http://doi.org/10.1038/nrneurol.2009.160

Rice J.E., (2000) The emperor with the shaking head: Claudius’ movement disorder. J R Soc Med; 93:198–201.

Shoemaker, R. C., & Maizel, M. M. S. (2009). Exposure to Interior Environments of Water-Damaged Buildings Causes a CFS-like Illness in Pediatric Patients: a Case/Control Study. Bulletin of the IACFS/ME, 17(2), 69–81.

Shoemaker, R. C., & House, D. E. (2005). A time-series study of sick building syndrome: chronic, biotoxin-associated illness from exposure to water-damaged buildings. Neurotoxicology and teratology, 27(1), 29–46.

Thrasher, J. D., Gray, M. R., Kilburn, K. H., Dennis, D. P., & Yu, A. (2011). A water-damaged home and health of occupants: A case study. Journal of environmental and public health, 2012.

WEBSITES

Cerebrum Health Center

Dystonia UK

NIH