Patient handout

Reversible Cerebral Vasoconstriction Syndrome (RCVS / Call-Fleming)

PRODUCTION

1. Your condition

This handout is for reversible cerebral vasoconstriction syndrome (rcvs / call-fleming). Your care team identified this based on: recurrent thunderclap headache (peak <1 min, severe, ≥2 episodes over 1-3 wk) — pathognomonic rcvs entry (ducros lancet neurol 2012 pmid 22995694; ducros brain 2007 pmid 18025032 — 94% present with multiple thunderclaps).

Other reasons your team may use this plan: thunderclap headache provoked by valsalva / sexual activity / exercise / bathing / sympathomimetic drug ingestion (calabrese ann intern med 2007 pmid 17200220); thunderclap headache 4-12 wk postpartum — postpartum cerebral angiopathy / rcvs phenotype (calabrese 2007 pmid 17200220; ducros 2012 pmid 22995694); multifocal segmental "string-and-beads" cerebral artery vasoconstriction on cta / mra / dsa, multiple vascular territories (calabrese 2007 pmid 17200220; ducros 2007 pmid 18025032).

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
discontinue_ssri_snri_triptan_ergot_decongestant_sympathomimetic	—	—	—	Vasoactive trigger removal is the foundational RCVS treatment — 42% of Singhal 2011 cohort (PMID 21482916) and 55% of Ducros 2007 series (PMID 18025032) had identifiable drug triggers; recurrence linked to re-exposure

Plan: RCVS calcium-channel-blocker + trigger-removal + supportive-care ladder (Calabrese Ann Intern Med 2007 PMID 17200220 + Ducros Lancet Neurol 2012 PMID 22995694 + Singhal Neurology 2017 PMID 27940651 anti-steroid pivot)

3. Your action plan

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

GREEN — Doing well — headaches resolving on nimodipine + trigger avoidance

If you have:

no_new_thunderclap_headache
no_focal_deficit
no_new_seizure
tolerating_nimodipine

Do this:

Continue nimodipine as prescribed
Keep MRA + headache-clinic appointments
Avoid SSRIs / triptans / decongestants / sympathomimetics / cannabis / cocaine / MDMA
Call clinic FIRST if planning pregnancy (postpartum recurrence ~5%)

YELLOW — Caution — call clinic same day

If you have:

new_persistent_headache_>24h_different_from_baseline
mild_BP_drop_<100_on_nimodipine
missed_doses
planned_dental_or_surgery_requiring_anesthesia

Do this:

Call clinic same day
Do NOT stop nimodipine without instruction
Bring medication list to call

RED — Emergency — call 911 / go to ED

If you have:

new_thunderclap_headache
new_weakness_speech_difficulty_visual_loss
new_seizure
loss_of_consciousness
persistent_vomiting_severe_headache

Do this:

Call 911 / go to nearest ED
Tell ED you have RCVS and take nimodipine
AVOID triptans / ergots / steroids — show ED this card

Call your provider if:

Any red-zone trigger
After any ED visit so vascular-neurology team updated

4. When to seek emergency care

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

Lobar intracerebral hemorrhage on CT/MRI complicating RCVS (Ducros 2007 PMID 18025032 — 6%)(life-threatening)
Extensive watershed / cortical / posterior-circulation ischemic stroke (Ducros 2007 PMID 18025032 — 4% infarction, typically week 2)(life-threatening)
Status epilepticus complicating RCVS (Ducros 2007 PMID 18025032 — seizures 3%)(life-threatening)
Postpartum 4-12 wk RCVS with eclampsia features (HTN + proteinuria + edema + new seizure) (Ducros 2012 PMID 22995694)
Patient pre-treated with glucocorticoids for presumed PACNS / migraine / other dx before RCVS confirmed (Singhal Neurology 2017 PMID 27940651)
Repeat MRA at 12 wk shows persistent multifocal vasoconstriction without resolution — atypical for RCVS (Calabrese 2007 PMID 17200220)

5. Follow-up

Headache clinic / vascular neurology at 6-12 wk for repeat MRA (reversibility = diagnostic gold standard); discontinue nimodipine when angiogram normalises and headache resolves (typically 1-3 mo); LIFELONG avoidance of SSRIs/triptans/sympathomimetics during high-risk windows; counsel re: future-pregnancy postpartum-RCVS recurrence; recurrence ≈5% (Ducros 2012 PMID 22995694; Singhal 2011 PMID 21482916)

6. Sources

Guideline: Calabrese et al, Ann Intern Med 2007 (foundational diagnostic framework) + Ducros, Lancet Neurol 2012 (comprehensive review) + Singhal Neurology 2017 (glucocorticoid-avoidance anchor) + Rocha Neurology 2019 (RCVSscore for PACNS differentiation)