Waking up to A Dystonic Storm

Dystonia is a neurological movement disorder that causes involuntary muscle contractions, leading to abnormal postures and movements. Dystonic storms, also known as dystonic crises, are a rare, except in my family it is quite common, but severe form of dystonia that involve prolonged and intense muscle spasms throughout the body. These spasms can be extremely painful and cause significant physical and emotional distress. 

Waking up in the middle of the night to a dystonic storm can be an incredibly traumatizing experience. Believe me!! I will never forget the first one for me. One moment I was lying on the bed just fine, and the next I was twisting and contorting in ways I cannot explain.  The sudden onset of intense muscle contractions can be extremely frightening, leaving individuals feeling helpless and out of control. The pain associated with the spasms can be excruciating, and there is no way to  find relief or comfort. 

In addition to the physical symptoms, dystonic storms can also have a significant impact on an individual's mental health. The unpredictability of when a dystonic storm may occur can create a constant state of anxiety and fear. This can lead to poor sleep quality, which can have further negative impacts on mental health and overall well-being. 

For those of us who have and I know some in my family still do have dystonic storms on a regular basis, the trauma can be compounded. The constant fear and anxiety associated with the condition can lead to a sense of hopelessness and despair. The impact on daily life can be significant, with individuals often unable to work or engage in social activities due to the unpredictable nature of the condition. 

 Seeking support from mental health professionals has helped me cope with the emotional toll of the condition. Although  this can be frowned upon by those around you, or that has been my experience 

 Waking up in the middle of the night to a dystonic storm can be a traumatizing experience. The intense physical and emotional symptoms associated with the condition can leave individuals feeling helpless and out of control. Seeking medical and emotional support is essential for managing the condition and improving overall quality of life. I am grateful to have a Wife that has been by my side through the whole disease. This is not always the case!! She has been the best caretaker I could have been given. A true blessing from my heavenly Father to me!!

 Even though this has been difficult on her she continues to do what she has to do to take care of me as well as the rest of her family and for that I am thankful