Over 1,300 people in Malaga live with excruciating facial pain - and 40% are misdiagnosed

According to the latest figures from the Spanish Society of Neurology (SEN), over 35,000 people in Spain suffer from the disorder.

However, diagnosis remains a major hurdle: around 40 per cent of patients receive an incorrect diagnosis during their initial consultation, with proper identification often taking more than a year.

Coordinator of the headache study group at the Sen Dr Roberto Belvís says: "As it is not the most common type of facial pain, it is often mistaken for other, more common conditions at the first consultation: dental problems, migraine, cluster headaches, temporomandibular joint disorder, sinusitis or ear infections."

Head of the neurology department at Malaga's Hospital Regional Dr Pedro Serrano explains: "The trigeminal nerve is a cranial nerve, a predominantly sensory nerve responsible for innervating half of the face on each side.

"When it is damaged or there is a disruption in nerve conduction, the activation of regenerative mechanisms triggers a functional disturbance that causes pain to arise. This occurs suddenly and lasts for short periods of time.

"We are talking about one of the worst types of pain there is. In France it has historically been known as the 'painful tic'. Although it is usually short-lived, it is very recurrent and poses a significant obstacle to carrying out everyday activities. Furthermore, there are 'trigger points' that set off the pain with actions as simple as chewing, swallowing or even mere touch," Serrano says.

Belvís defines the condition as follows: "The trigeminal nerve is the main sensory nerve of the face: its three branches run across the forehead and eye, the cheek and the jaw, and it is also responsible for the masticatory muscles. When it becomes irritated or compressed, it can cause episodes of pain so severe that the medical community ranks it among the most intense types of pain that exist."

Doctors say that the pain "can occur suddenly, with an intensity similar to an electric shock, and can be triggered by everyday activities such as talking, chewing, smiling, yawning, washing one's face or teeth or simply any touch on the skin".

"In the vast majority of cases, over 90 per cent, it affects only one side of the face and it is the maxillary and mandibular branches that are most frequently involved," Dr Belvís says.

Dr Serrano states that "in many cases, the cause is idiopathic, that is to say, unknown". "In other cases, we do identify the cause, such as a demyelinating disease, a neurinoma or vascular compression, which is perhaps the most common identifiable cause," he explains.

According to the Sen, the majority of cases are classified as "classic trigeminal neuralgia", which is associated with compression of the nerve root by a blood vessel. A smaller proportion is secondary to conditions such as multiple sclerosis or certain tumours.

Serrano adds that "it is not an excessively rare condition" and that "it is essential to distinguish it from other types of facial pain, such as atypical facial pain, because these are not strictly trigeminal neuralgia and do not respond to the same treatments".

There are treatments available. "There is usually a good response to drug treatments. When the cause is vascular compression, where an artery is pressing on the nerve, neurosurgeons carry out a standard procedure to relieve the pressure on the nerve," Dr Serrano says.

Hospital Regional's headaches team "continuously monitor more than 100 patients" with "primarily refractory cases, that is, those that do not respond to drug treatment". In these cases, Dr Serrano says, they use "neurosurgical techniques, such as surgery on the Gasserian ganglion". Only around 20 per cent do not respond to the initial drug treatment.

The peak age of onset is between 50 and 55 and the highest prevalence rates are recorded from the sixth decade of life onwards, the Sen says. It is estimated that 0.3 per cent of the population will suffer from it at some point in their lives.

The impact this condition has on quality of life is significant. The incidence of anxiety and depression among patients is almost three times higher than in the general population and 34 per cent experience a reduction in their ability to work.

More than half report some form of limitation in their daily activities, as well as social isolation, sleep disturbances or eating problems stemming from the fear that chewing might trigger a new attack.

According to the Sen, some patients develop suicidal behaviour during the most severe episodes of pain, which is why it is also known as the 'suicide disease'.

"That is why we place such great emphasis on the importance of trying to shorten diagnosis times, because the sooner the condition is identified, the sooner appropriate treatment can begin," Dr Belvís says.

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