MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Breathing & MND: medications and non-invasive ventilation

What you should know

  • Respiratory muscle weakness usually develops gradually, but can occur suddenly, and make breathing difficult 
  • Many people with motor neurone disease (MND) choose to use non-invasive breathing support, known as non-invasive ventilation (NIV)
  • NIV is most commonly used at night to support breathing and sound sleeping overnight 
  • NIV can also be used during the day
  • NIV is a type of breathing support where a machine boosts room air flow into your lungs, normally through a mask held on by straps around the head
  • Oxygen, as opposed to room air, should be used with caution and appropriate monitoring

For more information about how MND can affect breathing, read the Breathing and MND: an introduction fact sheet.

What you can do

Seek advice about breathing management soon after your diagnosis with motor neurone disease, even if you have not noticed any changes in your breathing1.

Having a breathing assessment is recommended2 as it helps to set a baseline for future reference and provide an opportunity to have discussions and start to think about which strategies maybe right for you. It is also important to have regular and ongoing assessments to review your breathing function2.

If you think your respiratory muscles are becoming weaker it is important to let your doctor or clinic know as soon as possible1.

Some of the common signs that may point to breathing muscle weakness may include2:

  • disturbed sleeping at night or loss of sleep
  • a quiet voice and being able to say fewer words per breath
  • shallow, faster breathing
  • breathlessness (dyspnoea) even when at rest
  • breathlessness lying flat (orthopnoea)
  • a weakened cough and sneeze
  • morning headaches
  • increased fatigue

For more information about things you can do to assist breathing, read the Breathing and MND: what you can do fact sheet.

Using non-invasive ventilation

Many people with motor neurone disease choose to use non-invasive breathing support, known as non-invasive ventilation (NIV). NIV can prolong and improve quality of life, and provide relief from symptoms of poor sleep and shortness of breath1–3. Surgery is not required for NIV.

NIV does not prevent progressive weakening of the respiratory muscles2. Over time, NIV will be less effective in helping you to control your respiratory symptoms, because your motor neurone disease will continue to progress. While NIV is suitable for many people with the disease, it is not suitable for everyone. A respiratory physician is required to assess how suitable NIV is for you. Discussions regarding the use of NIV should also be held with family and others involved in your care2,3.

The NIV machine is usually used at night. As the respiratory muscles weaken, you might also use NIV at times during the day. You might take some time to get used to the machine and feel comfortable wearing the mask2. The mask is connected to a small pump that creates just the right pressure to keep your airways open so that room air can easily come in and out of your lungs when you breathe.

There are many different types of masks available that can help to elevate issues like irritation to eyes, pressure areas on the face and feelings of claustrophobia for example.

Below is a short animation which helps explain NIV:


Using medications


Caution is required in the use of oxygen in people with MND due to the risk of carbon dioxide retention4. Any decisions regarding oxygen use should be discussed with your medical team.

Other medications

There are a number of medications that help to reduce the symptoms of breathlessness or reduce feelings of anxiety which can make breathlessness feel worse2,3.

Your neurologist, general practitioner, palliative care or respiratory physician can advise you about appropriate medications for you. Always consult your medical team before starting or changing medications.

What about invasive ventilation?

This type of ventilation is not commonly used in Australia. It provides breathing support via a tracheostomy5 which is a small surgical opening that is made through the front of the neck into the windpipe, also known as the trachea. A tracheostomy tube, is attached to a machine that supplies air to the lungs 24 hours a day. This is used to maintain a person’s breathing when their breathing muscles have failed and they can no longer breathe for themselves.

It is important to note that the MND will continue to progress which will result in ongoing weakness.

If invasive ventilation is something you would like to consider it is best to talk with your medical team as soon as possible.

Points to think about

The way you manage your respiratory symptoms may affect how your other symptoms of motor neurone disease can be managed.

While strategies and treatments can reduce respiratory symptoms, they do not prevent progressive weakening of the breathing muscles in a person with motor neurone disease. Eventually, motor neurone disease affects these muscles so significantly that there is not enough respiratory muscle function to sustain life. Early advice will provide you with time to think about a respiratory and palliative care plan that:

  • best meets your personal preferences
  • provides you with comfort in the final stages of the disease

It can be difficult to discuss your thoughts and feelings about respiratory management with your doctor, family and others close to you, but it is only by talking to them that they will understand how you feel. It will also help them provide support for your preferences, which may change over time.

The online MND decision tool can also help you learn more about your options for assisted ventilation.

Some questions to ask

What other options are available if NIV is not suitable for me?

How do I get out and about with a NIV machine?

How much does NIV cost?

Who provides the machines and the masks?

Does the government or my state MND Association provide assistance with cost?

What happens if I am using NIV and there is a power failure?

How will I be supported to use the NIV machine?

What happens if I decide that I want to stop using NIV?

How will my carer be trained and supported to supervise my use of NIV?