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Breathing and sleep

Breathlessness

Feeling short of breath, which in ALS/MND usually comes from the breathing muscles weakening rather than from the lungs themselves.

Still being checked

What this is

In ALS/MND, what usually changes is the strength of the muscles that move air in and out, and the diaphragm most of all, rather than the lungs themselves. That is why breathlessness here often shows up first when lying flat or during sleep, and why breathing support rather than oxygen is usually what is offered. Breathing is monitored deliberately in ALS/MND, and the symptoms you notice are part of what your team is watching for. Breathlessness can also have causes that have nothing to do with MND, which is why a new or sudden change is checked rather than assumed.

What people often describe

  • Getting short of breath on stairs, or talking and walking at the same time
  • Needing more pillows, or not being able to lie flat at all
  • Waking unrested, or with a headache
  • A feeling of not getting a satisfying breath, which is frightening in itself

Important distinctions

  • Breathlessness that comes on when you lie flat and eases when you sit up has its own name, and it is one of the earliest and most useful things to report.

  • A weak cough is about the force available to clear the airway. Breathlessness is about the effort of breathing. They come from the same muscles and are managed differently.

  • Night-time breathing often changes before daytime breathing does, so poor sleep and morning headaches can be the first sign rather than a separate problem.

What may help

This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.

Practical and self-management

Things people do themselves, or with whoever is helping them.

  • Positioning

    Sitting more upright lowers the effort of breathing, which is why it helps at rest as well as during activity.

    Highlighted: shows the sources for this statement

    Discuss with

    Compass explains

  • A fan or moving air

    A fan or an open window is one of the measures used for the feeling of breathlessness. It is one of the simplest things to try and costs nothing.

    Discuss with

    Compass explains

Medicines

Named here only where a guideline names them for this problem.

A medicine is named here only where a published guideline names it for this problem, and the guideline's own words are shown beside it. Compass does not advise on doses, and does not say which medicine is right for anyone.

  • Treating reversible causes first

    The first thing a team does when breathing gets worse is look for something treatable behind it, most often a chest infection or a problem with secretions.

    Highlighted: shows the sources for this statement

    Discuss with

    Compass explains

  • An opioid medicine

    NICE names this group as an option for relieving the symptom of breathlessness. It is used to ease the feeling, alongside the measures that address the cause. These medicines are most often discussed towards the end of life, but they are not only used then.

    Highlighted: shows the sources for this statement
    • This is prescribed and adjusted by a team experienced in using it alongside weakened breathing muscles. If you have questions about what it will do to your breathing, that is the question to ask them, and it is a common one.

    Discuss with

    Compass explains

  • A benzodiazepine medicine

    Where anxiety is making breathlessness worse, NICE names this group for that specific combination. It comes up most often in the later stages, but it is not limited to then.

    Highlighted: shows the sources for this statement
    • Tell your team about any night-time breathing or sleep symptoms you have noticed before one is started, and ask what to expect alongside weakened breathing muscles. It is a common question and a fair one to put to them.

    Discuss with

    Compass explains

Equipment

Devices and physical aids.

  • Non-invasive ventilation

    Breathing support delivered through a mask. NICE offers it as the treatment for respiratory impairment in MND.

    Highlighted: shows the sources for this statement

    Discuss with

    Compass explains

When to get this looked at sooner

Sudden or rapidly worsening breathlessness is different. Seek medical attention immediately, by calling emergency services or going to an emergency department, rather than waiting to reach your MND team. The cause may be something other than ALS/MND, such as a clot on the lung, and that needs treating quickly.

Highlighted: shows the sources for this statement

Who may help

Where Compass explains this

Questions

Cards

Other problems

Words explained

About this page

This page lists options that are used for this problem and says where each one comes from. It is not a ranking, it is not a recommendation, and it is not personalised to you. What suits you is a decision for you and your care team.

Evidence for this page

The sources behind the statements on this page, and where to find them. Compass does not decide which option is right for anyone.

  1. Statement 1 of 6. Sitting more upright lowers the effort of breathing, which is why it helps at rest as well as during activity.

    • Supports this. Guidelines for the physiotherapy management of MND — Irish Motor Neurone Disease Association · Clinical guideline · 2014

      An MND physiotherapy guideline lists minimising the effort required for respiration among what good alignment in sitting or lying achieves.

      “Positioning of the patient in a good alignment while sitting or supine can decrease abnormal muscle tone; prevent or reduce spasticity, contractures, and pain; prevent the development of pressure sores; and minimise the effort required for respiration.”

      Key recommendations, 3.4b.1O

      Link checked August 2026

  2. Statement 2 of 6. The first thing a team does when breathing gets worse is look for something treatable behind it, most often a chest infection or a problem with secretions.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      NICE tells teams to treat reversible causes, naming respiratory tract infections and secretion problems, before considering other treatments.

      “Treat people with MND and worsening respiratory impairment for reversible causes (for example, respiratory tract infections or secretion problems) before considering other treatments.”

      1.13.1

      Link checked August 2026

  3. Statement 3 of 6. NICE names this group as an option for relieving the symptom of breathlessness. It is used to ease the feeling, alongside the measures that address the cause. These medicines are most often discussed towards the end of life, but they are not only used then.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      NICE says to consider opioids as an option for relieving breathlessness in MND.

      “Consider opioids as an option to relieve symptoms of breathlessness.”

      1.13.4

      Link checked August 2026

  4. Statement 4 of 6. Where anxiety is making breathlessness worse, NICE names this group for that specific combination. It comes up most often in the later stages, but it is not limited to then.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      NICE says to consider this group of medicines for breathlessness that is made worse by anxiety. Note the scope: the recommendation is about breathlessness, not about anxiety on its own.

      “Consider benzodiazepines to manage breathlessness that is exacerbated by anxiety.”

      1.13.5

      Link checked August 2026

  5. Statement 5 of 6. Breathing support delivered through a mask. NICE offers it as the treatment for respiratory impairment in MND.

    • Supports this. NICE MND guideline — NICE · Clinical guideline

      NICE offers non-invasive ventilation as the treatment for people with MND who have respiratory impairment.

      “Offer non-invasive ventilation as treatment for people with respiratory impairment (see section 1.15).”

      1.13.2

      Link checked August 2026

    • Adds context. NICE MND guideline — NICE · Clinical guideline

      NICE also says that when NIV is discussed, the other ways of managing breathlessness should be explained alongside it, so it is a choice rather than the only thing on offer.

      “When discussing non-invasive ventilation, explain the different ways that people can manage their breathlessness symptoms.”

      1.15.3

      Link checked August 2026

  6. Statement 6 of 6. Sudden or rapidly worsening breathlessness is different. Seek medical attention immediately, by calling emergency services or going to an emergency department, rather than waiting to reach your MND team. The cause may be something other than ALS/MND, such as a clot on the lung, and that needs treating quickly.

    • Supports this. ALS Respiratory Support — Your ALS Guide · Practical guide

      Republished from the Compass answer "What breathing symptoms should I tell my team about between appointments?", where this statement is already mapped to this source.

      “If you develop sudden shortness of breath, it is important to seek immediate medical attention, as the cause could be something other than ALS, such as a blood clot in the lungs.”

      Shortness of Breath

      Link checked August 2026