What if I really struggle with NIV?

NIV can be a struggle for some people, so ask for as much support as you need

Starting NIV is a challenge for most people, but for some people it can be much more of a problem. They may feel stressed and overwhelmed by the ongoing issues.

First of all – seek help from your care team. Don’t be afraid to keep asking for help if things aren’t working out. They will want you to get the benefits of NIV and will have many ideas on how to support you.

For some people it may be practical issues, for example their face shape may mean most styles of masks cause discomfort and skin soreness. Others may have social and family circumstances that mean it is very hard to make it part of daily life.

For other people it may be the type of MND/ALS they have. People with the type that starts in the throat (known as ‘bulbar’ MND/ALS) can find it harder to use NIV. It may depend on how early they start it.

For some people invasive ventilation via a tracheostomy may be an option. However, these not are not yet commonly used in the UK.  See Considering a Tracheostomy for more information.

You may find that even with lots of support, NIV is too difficult to use. Discuss this with your care team. They will assess what other treatments can help ease your symptoms, such as medications and cough assist.