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Patient handout

Trigeminal Neuralgia (classic / secondary / idiopathic)

PRODUCTION

1. Your condition

This handout is for trigeminal neuralgia (classic / secondary / idiopathic). Your care team identified this based on: paroxysmal unilateral electric-shock / stabbing facial pain in a trigeminal distribution, fraction-of-second to <2 min (ichd-3 pmid 29368949; icop pmid 32103673).

Other reasons your team may use this plan: pain evoked by innocuous stimuli — light touch, chewing, talking, cold air, tooth-brushing, shaving (ean 2019 pmid 30860637); concomitant continuous background pain (tn type 2 — 49% of tn; maarbjerg pmid 25231219); existing tn on problem list — medication titration / refractory review (ean 2019 pmid 30860637).

2. Your medications

Take these medications exactly as prescribed. Do not stop or change a dose without talking to your provider.

MedicationStarting doseHowWhenWhat it does
carbamazepine100–200 mg PO; titrate by 100–200 mg every few days to effectPOBID (immediate-release) or per formulationFirst-line, strongest evidence — NNT ~1.7–2.6 for pain relief; ~70% initial response (AAN-EFNS 2008 Level A PMID 18721143; EAN 2019 PMID 30860637). Caveats: HLA-B*15:02 SJS/TEN (test at-risk ancestry), hyponatraemia, aplastic anaemia/agranulocytosis, CYP3A4 autoinduction + many DDIs
oxcarbazepine300 mg PO; titrate to 600–1800 mg/dayPOBIDEqually effective as carbamazepine for pain, better tolerated, fewer drug interactions, less enzyme induction (EAN 2019 PMID 30860637; AAN-EFNS 2008 Level B PMID 18721143). Hyponatraemia still occurs (often more than CBZ) — monitor Na

Plan: Trigeminal neuralgia pharmacotherapy — first-line carbamazepine/oxcarbazepine → add-on/alternative → acute-crisis IV (EAN 2019 PMID 30860637; AAN-EFNS 2008 PMID 18721143)

3. When to call your provider

Contact your care team if any of the following happen:

  • Unable to eat/drink/take oral meds OR dehydration / significant weight loss → ED/admission for IV therapy
  • Medically refractory OR intolerant → neurosurgery referral (do not delay)
  • Secondary-cause red flags (bilateral / V1 / age <40 / sensory deficit / abnormal reflexes) → urgent MRI
  • PHQ-9 Q9 positive / active suicidality → urgent psychiatry + safety planning
  • Severe hyponatraemia OR evolving rash on CBZ/OXC/lamotrigine → STOP drug + urgent evaluation
  • Age >50 + jaw claudication / visual symptoms → STAT ESR/CRP + steroids (GCA) — never delay

4. When to seek emergency care

Call 911 or go to the nearest emergency room right away if you have:

  • Acute TN crisis — pain so severe the patient cannot eat / drink / take oral medication; dehydration / weight loss (EAN 2019 PMID 30860637)
  • Inadequate pain control on optimised medical therapy OR intolerance of first-line agents — surgical-referral trigger (EAN 2019 PMID 30860637)
  • TN ("suicide disease") — positive suicidality screen (PHQ-9 Q9) or severe depression/anxiety (NRDP 2024 PMID 38816415)
  • Severe carbamazepine/oxcarbazepine hyponatraemia, blood dyscrasia, OR evolving SJS/TEN/DRESS rash (incl. lamotrigine rapid-titration rash) (EAN 2019 PMID 30860637)

5. Follow-up

Titrate to lowest effective dose; attempt drug-holiday in remission; neurosurgery candidacy review; secondary TN → underlying-disease pathway; pregnancy planning; longitudinal mood + nutrition (EAN 2019 PMID 30860637; NRDP 2024 PMID 38816415)

6. Sources

Guideline: EAN 2019 guideline on trigeminal neuralgia (Bendtsen, Eur J Neurol) + AAN-EFNS 2008 (Cruccu) + AAN/EFNS 2008 practice parameter (Gronseth) + ICHD-3 + ICOP 1st ed + Nat Rev Dis Primers 2024

  1. pubmed.ncbi.nlm.nih.gov/30860637
  2. pubmed.ncbi.nlm.nih.gov/18721143
  3. pubmed.ncbi.nlm.nih.gov/18716236