The Trigeminal Neuralgia A&E Guide UK: What To Do In An Emergency
I am not a medical professional – please take the below information as general guidance for what to do in a TN flare up where you feel you need to seek emergency medical advice. If you have any questions, these should be discussed with your doctor.
If you are in a trigeminal neuralgia flare up, or attack, that is not managed by your medication at home and you feel like you cannot cope, you might find yourself considering attending A&E.
When leaving the house, you should take with you:
- your personalised alert card (available to order from the TNA UK as part of your membership – click here to join)
- any medications you currently take
- a pen and paper, if your attack is triggered by speaking
- a scarf, if your attack is triggered by the weather/wind/breeze
If possible, you may want to take a friend or family member to support you, preferably someone who knows how your condition affects you.
If your attack is during the day, it might be quicker for you to be seen by your dentist, where you can request an injection of local anaesthetic. Anaesthetic may provide temporary relief from the pain.
If you need to attend A&E, there may be a wait and you may find that your condition isn’t heard of or understood by the reception team, nurses, or some doctors, so you need to be prepared to advocate for yourself.
The hospital may have an emergency dentist, neurologist or maxillofacial specialist available.
You may be offered standard analgesics (paracetamol, ibuprofen) or opiods (codeine), which generally do not work for trigeminal neuralgia pain. You will need to explain that you have trigeminal neuralgia and this type of nerve pain requires different medication.
You should ask for a local anaesthetic or nerve block, lidocaine, or for an anti epileptic drug (AED), such as fosphenytoin to be administered by IV. You may be dehydrated and the hospital should be able to provide an IV with fluids if you are admitted.
These medications should put your TN pain on a short break, enough to provide a bit of relief so you can get yourself back on your feet.
If you are struggling to discuss your condition or explain your pain, the TNA UK provide a free helpline, run by volunteers, all of which either live with trigeminal neuralgia or have experience of caring for someone with the condition. Our number is 0800 999 1899 and is available every day of the year.
If you have had to attend A&E for an attack, this may indicate that your medication dose isn’t quite right or the medication you are taking isn’t the right fit for your pain, so upon discharge, you should seek medical advice from your usual doctor, neurologist or surgeon about managing your neuralgia.
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I wish there were advocates here in the US. I’m so utterly alone in this since my doctor retired.
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There is an American Facial Pain Association – they may be able to help you! Look them up on Facebook ❤