Idiopathic Intracranial Hypertension (IIH)
Management of patients with presumed Idiopathic Intracranial Hypertension

If patient seen by Ophthalmology team at Frimley Park Site, refer to Ambulatory Emergency Care Unit at Frimley Park Hospital.

If patient seen by Ophthalmology team at Prince Charles Eye Unit, refer to the Ambulatory Emergency Care Unit at Wexham Park Hospital.

  1. Patient with papilloedema confirmed by Consultant Ophthalmologist. To have formal visual fields, fundal photos and OCT (or fluorescein angio) to exclude Drusen. Blood pressure must be checked to exclude malignant hypertension.

  2. Ophthalmology team to telephone ambulatory emergency care unit within working hours that day to refer the patient (Frimley Park AECU – 03006 133290 - or Wexham Park AECU – 03006 152345). Patient must be seen by ambulatory care team the same day or at the very latest, the following morning.

  3. Ambulatory care team to check blood pressure (again), U&Es, LFTs, FBC, HbA1c (exclude Addisons and Cushings) and clotting screen. If patient has visual loss/visual obscurations or signs of raised intracranial pressure (altered consciousness/behaviour, severe/morning headaches, nausea and vomiting, hypertension + bradycardia), ambulatory care team to arrange same day MRI head & MR venogram (if MRI not possible then perform CT head and CT venogram). If no mass lesion or other cause for papilloedema seen on brain imaging (eg: hydrocaphalus), then patient to have an urgent lumbar puncture unless there is a contraindication (eg: pt is anticoagulated or has a low platelet count).

  • If there is no visual loss or signs of raised intracranial pressure, MRI head & MR venogram to be performed within 3 days. If no mass lesion or cause for papilloedema then patient to have urgent outpatient referral to neurology team at that site and, at the Frimley site only, a referral to consultant neuroophthalmologist Dr. Karima Nesnas (see point 7 below). If space occupying lesion is found on imaging, then patient to be referred urgently to regional Neurosurgical unit.

  • If the patient has rapidly deteriorating or sight-threatening visual loss, contact the neurology team before patient is discharged – patient may need inpatient admission under medical team for urgent neurology review and consideration of emergency transfer to neurosurgical unit for emergency lumbar drain / shunt insertion / optic nerve fenestration.

  1. LP to be performed with patient relaxed in left lateral position and results clearly recorded. If opening pressure is ≥30cmH20 then drain sufficient volume of CSF to lower pressure to <20cmCSF. Send CSF for MC&S, AFB staining, protein, glucose (with paired serum glucose), oligoclonal bands (with paired serum oligoclonal bands) and cytology. If LP attempt on the ward is unsuccessful by a senior doctor (practised at LPs), then arrange image guided LP with radiology team.

  2. If pressure raised then give appropriate advice, i.e.,

    i. stop OCP, tetracyclines, steroids (review if long-term indication), vitamin A, nitrofurantoin

    ii. lose weight

  3. Start acetazolamide unless pregnant (esp. first trimester, may need pregnancy test) or allergic to sulphonamides or contra-indicated: Oral: 250mg bd and increase to 500mg bd. Advice re side effects, e.g., tingling in hands and feet.

  4. Patient to then be referred for urgent outpatient neurology follow-up at respective site and at the Frimley-site only a referral made to Consultant Neuro-ophthalmologist Dr. Karima Nesnas. These are to be formal referrals (and not simply a copy of the discharge summary) containing full clinical details (including patient contact details), results of all ophthalmology tests results and the LP opening pressure and closing pressure. For Frimley Site patients, email and for Wexham Park site patients email to: . Copies of referral/ discharge summary to GP and to the patient. Patient to be reviewed in neurology/neuroophthalmology clinic within 2 weeks of referral.

  5. Patient to be sent home with information sheet about post LP headache and about symptoms that need urgent review e.g., visual obscuration or diplopia.

Version:1.0
Guideline Lead(s):Dr. Ross Nortley Consultant – Neurology
Mr. Neil Modi – Consultant – Ophthalmology
ContributorsDr. Ruth Geraldes Consultant – Neurology,
Dr. Krishna Chinthapalli Consultant – Neurology
Dr. Jeremy Stern Consultant – Neurology
Dr. Sharon Power Consultant - Medical lead
Dr. Bethan Graf Consultant- AAU
Dr. Rob Barker Consultant - Radiology
Dr. Elena Boyd Consultant – Radiology
Dr. Karima Nesnas Consultant - Ophthalmology
Dr. Clare Galtrey Consultant - Neurology
Dr. Matt Craner Consultant - Neurology
Lead Director/ Chief of Service:Dr. Gareth Roberts
Ratified at:Neurology Department Clinical Governance meeting 18.11.20,
Noted by Frimley Health DTC May 2021
Pharmaceutical dosing advice and formulary compliance checked by:Manpreet Sihra 18.05.21
Date Issued:May 2021
Review Date:May 2024
Keywords:Idiopathic Intracranial Hypertension, raised intracranial pressure

This guideline has been registered with the trust. However, clinical guidelines are guidelines only. The interpretation and application of clinical guidelines will remain the responsibility of the individual clinician. If in doubt,contact a senior colleague or expert. Caution is advised when using guidelines after the review date.

This guideline is for use in Frimley Health NHS Foundation Trust hospitals only. Any use outside this location will not be supported by the Trust and will be at the risk of the individual using it.

This is a controlled document. If you are using a printed copy, check it against the guidelines site to ensure you are using the latest edition.

Print copies must be destroyed after use.