MSA Trust

08. Breathing Difficulties

Overtime people with MSA are unable to exercise to a level that induces deep breathing, so breathing can become shallow.

Asking your Physiotherapist or Speech and Language Therapist to show you how to do some deep breathing exercises and techniques to improve your lung volume, can be helpful and will improve the effectiveness of your cough. Improving your lung volume and cough will help clear secretions generally and particularly if you should get a chest infection.

Chest infections are the most common breathing problem experienced by people with MSA. Similarly to when someone with MSA has a urine infection, if you get a chest infection then all your MSA symptoms are likely to get worse at that time. Whenever there is rapid change in a matter of days to your MSA symptoms then it is worth checking if you have a urine or chest infection. You may be aware due to changes in your breathing or sensation of your chest being a bit ‘rattly’ that you probably have a chest infection. You may be coughing more or have an increase in discoloured secretions when you cough. Getting your chest checked by your GP and starting appropriate treatment is vital.

Aspiration is very often the reason someone with MSA gets a chest infection. Alteration of the swallow co-ordination allows saliva, food or drink to slip down the airway instead of going down the food pipe (oesophagus). When this happens, it triggers a reflex cough/choke to clear the invasion of the airway. However, sometimes the reflex isn’t sensitive enough to pick up tiny trickles going the wrong way and these droplets get into the lungs and cause a chest infection known as a silent aspiration pneumonia. Your Speech and Language Therapist and Dietitian can provide advice and strategies to reduce the risk of this happening.

If you experience regular episodes of coughing and spluttering when eating and drinking it is important to discuss this with your Speech and Language Therapist who may recommend modifying your diet. If this is necessary, then it is a good time to start thinking about how you will manage foods and drinks if your swallow becomes more difficult. One of the options is to have a tube that goes directly into your stomach through the abdomen – commonly called a PEG or Gastrostomy. It is best to have time to think about such interventions and have the opportunity to discuss them with your medical team. We have a PEG Feeding factsheet with more information here – https://www.msatrust.org.uk/support-for-you/factsheets/.

A proportion of people with MSA will experience some breathing difficulties that are due to the MSA damage in the brain stem and interferes with the way the vocal cords in your voice box (larynx) work and the airway becomes narrowed. As a result, a rasping and strained breathing noise develops, known as a stridor. This commonly occurs initially at night whilst sleeping, so a partner may pick up on it, but in time may develop in daytime too.

If you have stridor then you should inform your GP/ Consultant to get an urgent respiratory assessment at the hospital. There are treatment options and these needs to be discussed with you to decide what option is acceptable to you.

Obstructive sleep apnoea can occur in some people resulting in increased snoring. The muscles in the throat and top of the airway relax when we sleep and in some people they relax too much and can block the passage for air into the lungs. This requires a sleep study to be completed and you may be offered a CPAP (Continuous Positive Airway Pressure) machine. This is a small bedside box that provides pressurised air via a tube to a face mask (there are a number of different types to suit people). The pressure is set by the sleep clinic team to a level that keeps the relaxed muscles open enough to enable unobstructed breathing whilst asleep. Using the CPAP machine may mean you are less fatigued the next day and able to enjoy activities more.

Key messages

  • If you develop noisy breathing / stridor you need to see a doctor the same day as symptoms start
  • If you feel you can’t get your breath, then call 999 immediately
  • Treatment options for breathing difficulties need to be discussed so you can decide if they are acceptable to you
  • Sudden blood pressure changes or breathing changes can cause collapse so family and carers need to know first aid management
  • If you have authorised a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) it is important the document is kept with you and your family and carers are aware of this. You can read more about this here – https://www.msatrust.org.uk/support-for-you/planning-for-the-future/advance-care-planning/.

The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.