Idiopathic Intracranial Hypertension (IIH) - The Basics

AKA Pseudotumor Cerebri

by Teri Robert, Lead Expert

Simply speaking, Idiopathic Intracranial Hypertension (IIH) (sometimes called Pseudotumor Cerebri isn't a headache disorder, but it can cause headaches and trigger Migraines. IIH is a condition in which the body either produces too much cerebrospinal fluid or doesn't absorb it well, resulting in increased cerebrospinal fluid pressure.

Pseudotumor cerebri literally means "false brain tumor." The name pseudotumor cerebri has been used for this condition because its symptoms mimic those of brain tumors. It is officially and more accurately called Idiopathic Intracranial Hypertension (IIH). The term idiopathic is applied because it's cause is not truly known. It is likely due to high pressure caused by the buildup or poor absorption of cerebrospinal fluid in the subarachnoid space surrounding the brain, but the reason for the buildup or poor absorption are also unknown. The disorder is most common in women between the ages of 20 and 50. Being overweight seems to be a a possible contributing factor, but IIH should not be ruled out based only on body weight, age, or gender.

Symptoms of IIH:

  • headache, sometimes daily, sometimes severe, not relieved by medication

  • hearing loss

  • impaired vision or eventual blindness

  • memory problems

  • Migraine attacks with unexplained triggers

  • nausea

  • pain behind the eyes

  • pulsating intracranial noises

  • shoulder and/or neck pain

  • tinnitus

  • vomiting

Diagnosis of IIH:

The only truly definitive diagnostic tests for IIH are a lumbar puncture (LP) (spinal tap) or or by epidural or intraventricular pressure monitoring (CSF pressure monitoring). A lumbar pucture is the easier method, with the cerebrospinal fluid (CSF) pressure measured when the needle is inserted. In some patients, swelling of the optic nerve (papilledema) can be observed in a thorough eye exam. However, it is important to note that the absence of papilledema does not rule out IIH. Not all patients with IIH exhibit papilledema. When the LP is performed, it is also essential that the protein level and cell count of the fluid be tested. The presence of protein or elevated white blood cell count indicate can indicate that inflammation or infection could be causing the elevated CSF pressure. The second, more complicated method of diagnosing IIH is intraventricular pressure monitoring (CSF pressure monitoring). You can read more about it HERE.

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