Initiation of NIV

Optimisation of oropharyngeal secretions

Along with optimisation of cough, optimisation of oropharyngeal secretions is key to enabling effective use of NIV.

Whilst thin, watery secretions are an obvious problem which causes difficulties using NIV, treatment can thicken oral and respiratory secretions and cause dry mouth which can be equally distressing so assessment should examine all symptoms and treatment aiming to optimise quality of life and NIV tolerance.

Patients should be asked about:

You can monitor the symptoms of oropharyngeal secretions using the CSS-MND tool. Clinical saliva scale MND (CSS-MND)

Conservative measures should be offered to all patients

Thin secretions

Thick secretions and dry mouth

Medications to reduce saliva and mucus

Medical treatments for oropharyngeal secretions

Symptoms should be recorded on a scale to allow the response to different treatments to be evaluated such as the CSS-MND or use the ALS-FRS-R saliva question. For people without NIV tolerance problems, we’d recommend starting at low doses and increasing. Patients should be reminded to report the response and side effects of medication used regularly so the correct balance is achieved.

Hyoscine hydrobromide transdermal patch

Dose: 0.5mg patch per 72 hours. Patch can be cut in half (unlicensed).

Cautions and uses: Anticholinergic effects including confusion, urinary retention, dry mouth. Skin irritation (topical steroids may help).

Glycopyrollate tablet/oral solution

Dose: 1-2mg tds PO

Cautions and uses: Less likely to cause anticholinergic effects. NICE advised first line for patients with cognitive symptoms.

Atropine 0.5% eye drops

Dose: 1-2 drops sublingual 4-6 times per day

Cautions and uses: May be useful for people with intermittent symptoms, eg around mealtimes or in social situations.

Amitriptyline tablet

Dose: 10mg nocte, up to 1mg/kg/day

Cautions and uses: Caution advised in patients taking other antidepressants such as citalopram. Can cause anticholinergic effects and sleep disturbance/nightmares. Useful in people with neuropathic pain.

Botulinum toxin

Dose: See below

Cautions and uses: Reaches maximum effect within two weeks and lasts up to three months. Can worsen swallow and cause dry mouth. Most useful for people with gastrostomy. Can be given to people using anticoagulation with caution.

Botulinum toxin can be useful as it has no systemic side effects. It reaches its maximum effect within two weeks and can last three months. It can cause dry mouth and worsen swallowing so it is most useful in people who have a gastrostomy. Patients need to be counselled on the risk of swallow deterioration which may be permanent. Radiotherapy has been used in refractory patients but will cause permanent mouth dryness.

Carbocysteine tablet/syrup

Dose: 375mg tds to 750mg tds

Cautions and uses: To thin respiratory secretions. Tablets are large and may be difficult to swallow. May cause gastric irritation, consider using a proton pump inhibitor.

SST tablets

Dose: One tablet prn,  dissolve slowly in the mouth

Cautions and uses: Helpful for intermittent dry mouth

When things don’t work

Those with severe secretions, usually due to significant bulbar weakness, find it extremely difficult to tolerate NIV and the limitations of NIV should be explained to patients and their families to manage their expectations of ventilation. These patients need urgent MDT management of their secretions. A glycopyrollate syringe driver may be useful in controlling nocturnal symptoms to enable the use of NIV.

We would advise involving palliative care early in these patients and alternatives to NIV should be explored prior to and during a trial of NIV.

Good practice points

More resources

South Wales MND Care Network - Saliva management pathway (PDF, 279KB)

MNDA guidance to management of oral secretions (PDF, 277KB)

Clinical saliva scale MND (CSS-MND)