Patient handout

Catatonia — transdiagnostic syndrome; lorazepam challenge + titration → ECT for refractory / malignant (DSM-5-TR 2022; Bush 1996 PMID 8729911; Sienaert 2014 PMID 24523668)

PRODUCTION

1. Your condition

This handout is for catatonia — transdiagnostic syndrome; lorazepam challenge + titration → ect for refractory / malignant (dsm-5-tr 2022; bush 1996 pmid 8729911; sienaert 2014 pmid 24523668). Your care team identified this based on: dsm-5-tr ≥ 3 of 12 catatonia features (stupor / catalepsy / waxy flexibility / mutism / negativism / posturing / mannerism / stereotypy / agitation / grimacing / echolalia / echopraxia) (dsm-5-tr 2022).

Other reasons your team may use this plan: bush-francis catatonia screening instrument (bfcsi) ≥ 2 items positive — lr+ ≈ 8 for catatonia (bush et al acta psychiatr scand 1996 pmid 8729911); new-onset stupor / mutism / immobility unexplained by sedation, intoxication, or primary neurologic deficit (sienaert 2014 pmid 24523668); hyperthermia + autonomic instability + rigidity + ams with catatonic features — malignant catatonia (life-threatening; ddx nms) (mann + caroff 1986; sienaert 2014).

2. Your medications

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

Medication	Starting dose	How	When	What it does
lorazepam	2 mg IV / IM challenge (1 mg in geriatric / dementia / debilitated)	IV / IM	single challenge; re-rate BFCRS at 5-10 min (IV) or 15-30 min (IM)	Bush 1996 PMID 8729911 / Sienaert 2014 PMID 24523668 — lorazepam challenge is BOTH diagnostic AND therapeutic; positive response (≥ 50% BFCRS reduction) confirms catatonia and opens the titration ladder; ~ 80% response rate within 30-60 min

Plan: Catatonia lorazepam ladder — challenge → titration → ECT for refractory + malignant rescue (Sienaert 2014 PMID 24523668; Bush 1996 PMID 8729911; APA 2024)

3. Your action plan

Use these zones to know what to do based on how you feel.

GREEN — Doing well — underlying disorder controlled, no catatonic features, medication adherent (Sienaert 2014; APA 2024)

If you have:

No mutism, immobility, or posturing episodes (Sienaert 2014)
Sleeping and eating normally (APA 2024)
Engaging with family + supports (APA 2024)
Taking medications as prescribed (APA 2024)
Not using substances (APA 2024)
Attending appointments (APA 2024)

Do this:

Take lorazepam + underlying-disorder medication every day as prescribed — do not stop without discussing with your psychiatrist (Sienaert 2014)
Attend all psychiatry appointments (APA 2024)
Maintain regular sleep schedule and daily routine (APA 2024)
Avoid alcohol and substances — these can trigger relapse (APA 2024)
Keep crisis line numbers accessible (APA 2024)
Attend maintenance ECT sessions if scheduled (Sienaert 2014)

YELLOW — Caution — early warning signs of catatonia or underlying disorder relapse (Sienaert 2014; APA 2024)

If you have:

Brief episodes of mutism or "freezing up" (Sienaert 2014)
Slowing down of movements or speech (Sienaert 2014)
Difficulty starting tasks or making decisions (Sienaert 2014)
Holding unusual postures or making repetitive movements (Sienaert 2014)
Mood symptoms returning (depression / mania features) (APA 2024)
Missed medication doses in the past week (APA 2024)
Using alcohol or substances again (APA 2024)
Sleeping much more or much less than usual (APA 2024)

Do this:

Contact your psychiatrist within 24-48 h — do not wait for your next scheduled appointment (Sienaert 2014)
Resume medication if you have missed doses (APA 2024)
Reach out to a support person or family member (APA 2024)
Avoid all substances including alcohol (APA 2024)
Increase structure — follow daily routine, attend appointments (APA 2024)

Call your provider if:

Any warning sign persists > 2 days despite coping strategies (Sienaert 2014)
Frequent or prolonged mutism episodes (Sienaert 2014)
Family / friends notice you "freezing up" or holding unusual postures (Sienaert 2014)
Thoughts of hurting yourself or others (Palmer 2005; APA 2024)
Stopped taking medication for ≥ 3 days (APA 2024)

RED — Medical alert — frank catatonia, malignant features, active suicidality (Sienaert 2014; APA 2024)

If you have:

Unable to speak, move, or eat for hours (Sienaert 2014)
Holding a fixed posture for hours that cannot be re-positioned by others (Sienaert 2014)
Severe muscle stiffness with high fever — possible malignant catatonia (Mann + Caroff 1986)
Heart racing or blood pressure swings + confusion + sweating + stiffness (Sienaert 2014; Caroff 2007)
Thoughts or plans to end your life (Palmer 2005)
Severe agitation, aggression, or self-harm (APA 2024)

Do this:

Call 988 (US) / your local crisis line / emergency services NOW (APA 2024)
Go to the nearest emergency department — do not be alone (Sienaert 2014)
Tell someone you trust what is happening immediately (APA 2024)
If fever + stiff muscles — go to ED immediately (possible malignant catatonia or NMS per APA 2024; Sienaert 2014)
Do not take more medication than prescribed (APA 2024)
Do not use any substances (APA 2024)

Call your provider if:

Any red zone trigger — emergency department immediately (Sienaert 2014; APA 2024)

4. When to seek emergency care

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

Confirmed catatonia (DSM-5-TR ≥ 3/12 features OR BFCSI ≥ 2 items per Bush 1996 PMID 8729911) — 2 mg IV / IM lorazepam challenge diagnostic + therapeutic; ~ 80% respond within 30-60 min (Sienaert 2014 PMID 24523668; Bush 1996)
Catatonia + hyperthermia > 38.5 °C + autonomic instability + rigidity + AMS — life-threatening; ddx NMS (especially if recent AP exposure); mortality high without prompt ICU + ECT (Mann + Caroff 1986; Sienaert 2014; Caroff 2007)(life-threatening)
Catatonic features + NMS clinical features (recent AP exposure + hyperthermia + lead-pipe rigidity + AMS + autonomic instability + CK elevation per Levenson criteria) — life-threatening; routes to AP-driven sibling dossiers (APA 2024; Caroff 2007)(life-threatening)
Catatonic features + young patient (especially female) + subacute behavioural change + ≥ 1 of seizures / orofacial dyskinesia / autonomic instability / decreased consciousness / cognitive decline + supporting features (CSF lymphocytic pleocytosis OR EEG abnormality including extreme delta brush OR MRI T2/FLAIR abnormality) — life-threatening organic mimic (Dalmau 2011 PMID 21163445; Graus 2016 criteria; Pollak 2020 PMID 32078818; Titulaer 2013)(life-threatening)
No response to lorazepam at adequate dose (8-24 mg/day) × 24-72 h — refractory catatonia; ECT 2nd line; DO NOT add antipsychotic (Sienaert 2014 PMID 24523668; Petrides + Fink 1996)
Catatonia in pregnancy at any trimester — severe; ECT is safe across all trimesters (Anderson + Reti 2009); lorazepam acceptable but consider neonatal withdrawal risk near delivery; the alternative (untreated severe catatonia) carries fetal + maternal morbidity higher than treated ECT (Sienaert 2014; Anderson + Reti 2009)
Active catatonia — antipsychotics worsen catatonia + increase NMS risk; the single most important anti-pattern in catatonia management (Sienaert 2014 PMID 24523668; APA 2024)
Catatonic features within days-weeks of abrupt clozapine discontinuation in clozapine-responsive schizophrenia patient — restart clozapine + lorazepam first; ECT if refractory; do NOT switch to alternative AP (Lally + Tully 2018; Sienaert 2014)

5. Follow-up

Continue lorazepam at effective dose for 4-12 weeks post-remission then taper slowly per response (Sienaert 2014); treat underlying disorder long-term (lithium / valproate for bipolar maintenance; antipsychotic at low dose AFTER catatonia resolved if schizophrenia spectrum — with close NMS monitoring; SSRI / antidepressant for MDD); maintenance ECT q 2-6 weeks if recurrent catatonia despite optimisation; relapse prevention (medication adherence, substance avoidance, stress management) (Sienaert 2014; APA 2024)

6. Sources

Guideline: DSM-5-TR (2022) catatonia specifier + Bush-Francis 1996 PMID 8729911 (BFCRS canonical) + Fink + Taylor 2003 textbook + Sienaert 2014 PMID 24523668 (clinical review) + APA Practice (literature)