Living With ALS

Breathing and ALS

Breathing changes can develop gradually and may be easier to notice at night. A clinical team should evaluate symptoms and testing rather than relying on one symptom alone.

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I feel short of breathI have trouble breathing when lying downI wake with headachesI am sleepy during the dayMy cough is weakI cannot clear mucusI want to understand NIV/BiPAPI want to understand ventilatorsI want to understand tracheostomy ventilation

Respiratory muscle weakness

ALS can weaken the muscles used for breathing and coughing. Shortness of breath, difficulty lying flat, a weak cough, morning headaches, daytime sleepiness, or unrefreshing sleep should be discussed with the ALS team.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Respiratory testing

Respiratory assessment may include forced vital capacity where relevant, inspiratory pressures, and other tests chosen by the clinical team. Results need to be interpreted together with symptoms, position, sleep, and the person’s overall condition.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Nighttime breathing and hypoventilation

Nocturnal hypoventilation can contribute to morning headaches, daytime sleepiness, frequent waking, difficulty lying flat, or unrefreshing sleep. These symptoms need clinical evaluation; they should not be self-treated with oxygen.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease · Amyotrophic lateral sclerosis — Diagnosis and treatment

Noninvasive ventilation

Noninvasive ventilation, sometimes called NIV or BiPAP, uses a mask or other interface to support breathing without a tracheostomy. The respiratory team helps choose the timing, settings, interface, humidification, and troubleshooting plan.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Interfaces and mouthpiece ventilation

Masks and interfaces may include nasal, full-face, total-face, or mouthpiece options. Mouthpiece ventilation may be appropriate for some people and requires individualized respiratory assessment.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Cough, suction, and secretions

A weak cough can make it harder to clear mucus. Cough-assist devices, suction, humidification, and secretion-management strategies may be considered with the respiratory team.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Invasive ventilation and respiratory decisions

Some people discuss invasive ventilation through a tracheostomy before it becomes urgent. These decisions can include goals, expected burdens, caregiver support, equipment, emergency plans, and what matters most to the person.

Sources: Managing Breathing Issues · Respiratory symptoms in motor neurone disease

Sources & Further Reading

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This information is for education and does not replace individualized medical advice, diagnosis, treatment, or emergency care.

Last reviewed: 09-30-2026

Medical information should be reviewed periodically as guidance, benefits, and equipment options change.