Hearing, breathing and sleep

CMT is known for hands and feet, but in some people hearing, breathing or sleep are involved too. These complaints are often recognised late, while something can usually be done about them.

The complaints on this page do not occur in everyone and depend strongly on the type of CMT. They are gathered here because they share one thing: people rarely raise them spontaneously, because they do not connect them to CMT.

Hearing

In some forms of CMT it is not the ear itself that is affected but the auditory nerve. That gives a typical pattern: a hearing test that looks reasonable, while in a busy restaurant or a meeting you can barely follow. Ask explicitly for speech-in-noise testing — ordinary tone audiometry misses this problem.

A classic hearing aid does not always help here. What often does: a directional microphone or streaming to the hearing aid, and simply sitting so that the person you are talking to is not backlit.

Breathing

Weakness of the diaphragm is unusual in CMT, but it happens. The signals are indirect: breathlessness when lying flat, headache on waking, daytime sleepiness, poor sleep without an obvious reason. Lung function tests — including lying down — and, if needed, a sleep study bring this to light. Where necessary, night-time breathing support exists and can greatly improve daytime complaints.

Sleep

Sleep apnoea is more common than average, and restless legs and night cramps disturb the night as well. Poor sleep in turn worsens pain and fatigue, putting you in a circle that is easily attributed to CMT while a treatable cause sits underneath it.

Voice and swallowing

In a small number of types the vocal cords can be involved. Think of hoarseness that does not clear, a weak voice by the end of the day, or noisy breathing on exertion. Report this — it belongs to the picture and follow-up exists.

What to do with this

Bring these complaints to your annual check-up at the neuromuscular reference centre, even if they seem unrelated to your feet and hands. They are exactly the kind of thing a multidisciplinary team can refer on.