Go through these in order and stop at the first one that applies. If you are reading this for someone else, answer for them.
Call emergency services for severe breathing difficulty, blue or grey lips, collapse, a seizure, loss of consciousness, or failure of essential ventilator equipment when there is no effective backup.
Use the emergency plan provided by your specialist service while help is coming.
Seek urgent medical assessment if you become unusually drowsy, confused, hard to wake, or noticeably more short of breath.
A respiratory infection accompanied by worsening sleepiness or ventilator problems also needs prompt attention.
Arrange routine follow-up if you develop more morning headaches, daytime sleepiness, poor concentration, breathlessness, or reduced exercise tolerance.
Also seek advice if a mask leaks, the ventilator feels uncomfortable, alarms recur, or you are no longer able to use the equipment for the planned amount of time.
Contact your specialist team before planned surgery or sedation.
The anaesthesia team needs to know about the condition and any ventilatory support you use.
Ask for advice before taking a new opioid, sleeping medicine, or other sedating drug.
Every sign above is quoted from the sofidex article on Primary alveolar hypoventilation. If you are not sure, err upward — it is always reasonable to be checked.