Patient handout

Idiopathic Intracranial Hypertension (Pseudotumor Cerebri)

PRODUCTION

1. Your condition

This handout is for idiopathic intracranial hypertension (pseudotumor cerebri). Your care team identified this based on: progressive headache in young woman with elevated bmi (≈90% of iih; friedman 2013 pmid 23966248).

Other reasons your team may use this plan: transient visual obscurations (≈70% in iih; seconds-long greyout with postural change / valsalva; mollan 2018 pmid 29903905); pulsatile tinnitus (≈60% in iih; turbulent flow at transverse-sigmoid stenosis; mollan 2018 pmid 29903905; gurney 2020 pmid 32021528); horizontal diplopia from cn vi palsy (non-localising sign of raised icp; friedman 2013 pmid 23966248).

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
lifestyle_weight_loss_multicomponent	—	—	—	Multicomponent lifestyle intervention (diet + activity + behaviour) — Abbott 2023 grade B for BMI<35 (PMID 37813577); 5-15% weight loss reduces ICP and headache disability (Markey 2015 PMID 26700907)
bariatric_surgery_referral	—	—	—	Bariatric surgery is superior to community weight management at lowering ICP and inducing remission (Mollan IIH:WT 2021 PMID 33900360 + 2022 substudy PMID 35790425); Abbott 2023 grade A for BMI≥35 (PMID 37813577)
liraglutide	0.6 mg SC daily, titrate to 3.0 mg SC daily over 5 weeks	SC	daily	GLP-1 receptor agonists shown to reduce ICP and produce weight loss in IIH pilot data — emerging adjunct flagged in Mollan 2019 review (PMID 30865008); not yet AHA/UK consensus first-line

Plan: IIH four-pillar treatment ladder — weight loss + carbonic-anhydrase inhibitor + topiramate adjunct + surgical rescue (Mollan 2018 PMID 29903905 + Wall IIHTT PMID 24756514 + Mollan IIH:WT 2021 PMID 33900360 + Abbott 2023 PMID 37813577 + Gurney 2020 PMID 32021528)

3. Your action plan

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

GREEN — Doing well — stable IIH

If you have:

no_new_vision_symptoms
stable_headache_burden
on_target_with_weight_loss
on_track_with_acetazolamide

Do this:

Continue acetazolamide / topiramate as prescribed
Keep ophthalmology + neurology + bariatric appointments
Maintain weight-loss programme
Avoid IIH-trigger drugs (tetracyclines, retinoids, lithium, GH) lifelong

YELLOW — Caution — call IIH clinic same day

If you have:

new_intermittent_visual_obscurations
worsening_daily_headache
weight_regain_>5pct
paresthesias_or_GI_symptoms_on_acetazolamide
planned_pregnancy_or_positive_test

Do this:

Call IIH clinic / neuro-ophthalmology same day
Do NOT stop acetazolamide without instruction
If pregnancy positive — stop topiramate immediately + contact clinic
Bring medication list to clinic call

RED — Emergency — call 911 / go to ED

If you have:

sudden_or_progressive_vision_loss
thunderclap_headache
new_focal_neurological_deficit
loss_of_consciousness
severe_diplopia

Do this:

Call 911 / go to nearest ED
Tell ED you have IIH on ACZ ± topiramate
Bring medication list and any ophthalmology summary

Call your provider if:

Any red-zone trigger
After any ED visit so IIH team is updated

4. When to seek emergency care

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

Vision loss progressing over <4 weeks from onset (Mollan 2018 PMID 29903905)(life-threatening)
Frisén grade 4-5 OR OCT RNFL >300 µm at presentation (Wall IIHTT 2014 PMID 24756514; Mollan 2018 PMID 29903905)
Worsening HVF perimetric mean deviation on optimal medical therapy (Wall IIHTT 2014 PMID 24756514)
Pregnancy-IIH with progressive vision loss (Mollan 2018 PMID 29903905)

5. Follow-up

Lifelong relapse surveillance — recurrence with weight regain is common; reinforce weight-maintenance + bariatric-surgery referral if BMI ≥35 sustained; PCOS / OSA co-management; contraception counselling (avoid GH, retinoids, tetracyclines lifelong); pregnancy planning + monitoring algorithm (Abbott 2023 PMID 37813577; Mollan 2018 PMID 29903905)

6. Sources

Guideline: Mollan IIH consensus management guidelines (JNNP 2018 PMID 29903905) + Friedman 2013 revised diagnostic criteria (Neurology 2013 PMID 23966248) + Wall IIHTT (JAMA 2014 PMID 24756514) + Mollan IIH:WT (JAMA Neurol 2021 PMID 33900360) + Abbott weight management systematic review (Neurology 2023 PMID 37813577)