Patient is already under active follow up with the UHB team
TGN patients are looked after by a variety of teams: Neurology, neurosurgery, ENT, Maxillofacial surgery and chronic pain – please make sure that you try to make contact with the patient’s usual medical team. The following relates to patients who are under the care of the neurology or neurosurgery teams.
When communicating with the team at UHB, please make sure to specify what medication the patient is currently taking for their trigeminal neuralgia including the dose and frequency; ideally we would also like to know what medications have been tried in the past and the reason that they were discontinued.
If the patient has been listed for surgery and is awaiting a date please contact the neurosurgical secretaries.
If the patient has been referred to The National Centre for Stereotactic Radiosurgery in Sheffield and is trying to find find out about the appointment then they can contact the team there.
If the patient is under the neurology team and is in pain or has side-effects from treatment, we may be able to advise on adjusting the medication. Please contact the headache team.
You may also be able to find advice adjusting or monitoring medication in the FAQ section below.
If the patient is in severe pain much of the time and can’t eat/drink/sleep etc. they can go to ED at UHB. It would be much better if this was during normal working hours AND the patient has a letter from the neurology team with a care plan. You can contact the neurology team to let them know the situation.
Patient is not under active follow up with UHB at the moment
If the patient is under active follow up with a team in a different hospital/trust, please contact them.
If the patient is new to the practice or has recently moved to the West Midlands. Please refer them to neurology via the Advice and Referral system and include the following information:
- Details of where the diagnosis was made and when
- Current and prior medical and surgical interventions (if known)
You suspect the patient has TGN
TGN always has the following characteristics:
- It is neuralgic – it feels like an electric shock; the character of pain may change if and when the patient is on
- It is limited to the distribution of the trigeminal nerve – so doesn’t go back past the tragus of the ear or below the jawline. You can get referred pain in a wider distribution but the severe, electric shock pain should be restricted to just the face. It can rarely be bilateral.
- It is triggered – when the patient touches their face or walks into cold wind etc. they get a stab of pain. This may also be masked my medication
- It ‘responds’ to carbamazepine – It may not go away completely and the side-effects of carbamazepine may be difficult to tolerate, but it should improve a bit.
If the pain fits these characteristics – please:
- Start or escalate carbamazepine or lamotrigine – see FAQ and medication escalation regime below.
- Refer the patient to Neurology via the A+R system.
FAQ and medication escalation regimes
Does my patient need a brain scan?
We would advise a brain scan for all patients presenting for the first time with TGN.
This will usually be requested at the first appointment with a neurologist.
If the pain is associated with wasting of the temporal and jaw muscles then the scan should be done more urgently – please contact the neurology team via the Advice and Referral system
The commonest finding is ‘neurovascular conflict’; a blood vessel sitting very close to the nerve. This is helpful in planning surgery in refractory cases but can also be seen in people who do not have TGN.
Is there anything else it could be?
Trigeminal Autonomic Cephalalgias such as cluster headache and SUNCT/SUNA can appear similar to TGN; they are usually associated with autonomic activation – ptosis, meiosis(small pupil), peri-orbital oedema, lacrimation (tearing), nasal discharge, and agitation.
Very rarely you can get painful trigeminal neuropathy – progressive numbness and weakness/wasting in the muscles of mastication. The patient would need an urgent referral via the Head and Neck cancer pathway.
Medication escalation regimes
The only licensed treatment for TGN is carbamazepine, but all of the medications on the list can work:
- Carbamazepine
- Oxcarbazepine
- Lamotrigine
- Gabapentin
- Pregabalin
- Amitriptyline
If you patient has seen the neurology team they may have been put on a medication that is not on this list. The majority of medications used are anti-seizure medications; escalation regimes for these can be found here:
Last reviewed: 03 April 2025