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What is a dystonic storm?

What is a dystonic storm?

  • It consists of continuous, severe dystonic movements (involuntary muscle spasms)
  • The spasms can last anywhere from a few hours to several days or weeks
  • It can be life-threatening if not treated properly and often leads to hospital admission

What should be done when it occurs?

  • Early hospital admission may allow doctors to better control triggering factors and prevent complications
  • The best first-line treatment is sedation
    • Sedation attempts to stop the involuntary muscle spasms
    • The duration of sedation is determined by evaluating the patient’s symptoms during brief moments when the sedations drugs are reduced
  • Second-line strategies include the use of IV Baclofen and DBS (Deep Brain Stimulation)
  • While being treated, individuals should also be evaluated for treatable causes of pain
    • Sometimes these unrecognized complications are triggering the dystonic storm
    • Occult gastrointestinal bleeding (bleeding not visible to patient or doctor)
    • Urinary tract infections
    • Occult or subtle bone fractures (fractures that don’t appear in x-rays or are hard to see)

Is there a way to prevent it?

  • Over time individuals and/or their families can start to recognize certain triggers that send them into a dystonic storm
  • Once their personal triggers are identified, individuals can sometimes learn to avoid them

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