By Jacob Ahlstrom | Posted - Jun 23rd, 2020





Sleep and ALS

For people with Amyotrophic Lateral Sclerosis, sleeping is a stressful time. Both patient and caregiver suffer from sleep disturbances which are common among patients with ALS. These disturbances need to be recognized and treated to alleviate the burden on both patient and caregiver.  

Sleep disturbances can be both physical and non-physical. Physical symptoms include sleep-disordered breathing, Immobilization, muscle cramps, and what is called restless leg syndrome or the irresistible urge to move the legs while resting. These conditions significantly add to the individual burden as well as the caregiver’s burden of taking on ALS. Non-physical symptoms such as fear, depression, and grief have been known to contribute to insomnia in patients as well. To alleviate the effect of these sleep-related symptoms caregivers must be active about asking the patient for specific symptoms and consider options for all treatable conditions.  

 To alleviate the effect of these sleep-related symptoms caregivers must be active about asking the patient for specific symptoms and consider options for all treatable conditions.  


RLS (Restless leg syndrome) 

Worsening motor function increases difficulty to change position in bed. Patients may be lying in bed unable to fall asleep because of the irresistible urge to move their legs, this is called Restless leg syndrome (RLS). 


  • Urge to move the legs 
  • Unpleasant or painful sensations in the lower limbs 
  • Only during rest or inactivity, circadian occurrence, evening or night, relief during voluntary movement (walking, stretching). 
  • Causes sleep disturbances 

Common treatments 

  • If symptoms are present, pharmacological treatment strategies include iron supplement, dopaminergic agent, ligands 


Muscle fasciculations 

Due to damage found in the lower motor neurons, the neurons that connect with muscles, rapping muscle twitching or fasciculations are common.  


  • Recurrent muscle cramps  
  • Leg muscle cramps 

Common treatments 

  • Active stretching may help ending these discharges  
  • Sufficient fluid intake, correction of electrolyte imbalances, cessation of any causative medications 
  • Mexiletine: 150 mg twice daily has been reported to alleviate ALS-related muscle cramps  
  • Quinidine: it is known to reduce cramp frequency and intensity, but it is also associated with severe thrombocytopenia (low blood pallet count), cinchonism, myocardial toxicity 


Nocturnal Pains in ALS 

Nocturnal pains are just that, pains during the night that disturb sleep. Pain and sleep go hand in hand, the lack of sleep can increase pain and the pain can lead to the lack of sleep. In ALS some nocturnal pains can be pinpointed such as restless sleep syndrome or muscle cramps. Other symptoms are not as straightforward and are called neuropathic pain often described as a shooting or burning pain that cannot be clearly localized. 


  • Pain disrupts sleep
  • Immobilization and inability to adjust in bed  

Common treatments 

  • Treatments for nocturnal pains in patients with ALS have not been specifically investigated in clinical studies. 


Sleep-Related Breathing Disorder 

Airway disruptions can be one of sleep's greatest disturbances both for patient and caregiver. Taking the proper precautions to ensure proper air flow during sleep can increase life expectancy in ALS patients.  


  • Nocturnal hypoventilation  
  • Obstructive sleep apnea 
  • Less likely to occur in bulbar onset 
  • Sleep disruption 
  • daytime sleepiness 
  • Morning headache 
  • Dyspnea- shortness of breath (feels like you cannot breathe in enough air) occurs;  during sleep, while lying on ones back, upon exertion and in patients with advanced diaphragm weakness may adopt a sitting position in bed. 

Common treatments 

Ventilatory support 

  • Ventilation support should be given through Non-invasive ventilation 
  • Usually a nasal mask or face mask 

Non-invasive ventilation (NIV)  

  • Prolongs survival  
  • Better life expectancy when NIV is started early 
  • Finding the best mask fitting for the patient is essential for helping sleep disruption 
  • Non-invasive ventilation use may cause obstruction in the upper airways. 

Check out more articles on ALS here:

Connect with ALS Crowd on Social Media: Together We're Stronger

Pimozide May Provide Better Quality of Life for ALS Patients


Jacob Ahlstrom
About the Author

Jacob Ahlstrom - Jacob is a Neuroscience undergraduate at Brigham Young University. Jacob's interest in researching and writing about ALS is fueled by his hope to make the process easier for everyone else. Over the last year he has worked alongside Seth Christensen to find ways to educate and connect ALS patients.