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)

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