Papilledema

What is papilledema?

Papilledema refers to the swelling of both optic discs in your eyes due to increased intracranial pressure (intracranial hypertension). Cerebrospinal fluid (CSF) is constantly being released and then reabsorbed and normal levels help protect the brain from trauma.

The optic disc, or nerve head, is located where the optic nerve enters the back of the eye. The optic nerve is a pathway that connects the eye to the brain.

Intracranial hypertension usually results in bilateral papilledema (disc swelling of both optic discs). Swelling of the optic disc in only one eye (unilateral) is usually not the result of intracranial hypertension. Because of this, its name is optic disc edema.

Papilledema can be considered a medical emergency because intracranial hypertension can be serious, even potentially life-threatening.

Who does papilledema affect?

Papilledema is more common in women and people assigned female at birth (AFAB). They’re usually 20 to 44 years old and are likely to have overweight (a BMI greater than 25) or obesity (a BMI greater than 30). The incidence of papilledema in this group is 13 per 100,000.

The incidence is much lower among other groups in the U.S. The incidence of papilledema among the U.S. population as a whole is 0.9 per 100,000 people.

What are the signs and symptoms of papilledema?

You may have no symptoms (be asymptomatic), though you may have:

• Headaches: Headaches related to papilledema may be worse in the mornings and when you’re lying down.
• Transient visual obscurations: These events are periods of about five to 15 seconds where your vision gets blurry, goes gray, or blacks out. An obscuration is similar to what happens during a total eclipse when the moon blocks the sun from your sight. These events usually happen when you change posture. You can have these events in both eyes (bilateral) or in only one eye (unilateral).
• Double vision (diplopia): This may happen if the intracranial hypertension results in a cranial nerve palsy that impairs the eye muscles.
• Nausea and vomiting.
• Neurological symptoms: These may include problems with movement or thinking.

The vision loss worsens as the condition progresses.

What causes papilledema?

High intracranial pressure causes papilledema. Related issues may include:

• High blood pressure (malignant hypertension).
• Tumors.
• Infection, bleeding or inflammation in the brain or the meninges (the tissues that protect the brain and spinal cord).
• Cerebral venous sinus thrombosis. This condition refers to a blood clot in a vein in your brain.
• Iron-deficiency anemia.
• Medication usage. There have been links with retin-A and retinoids, toxic amounts of vitamin A, tetracycline antibiotics, COVID-19 and corticosteroids.
• Idiopathic intracranial hypertension (IIH). This condition literally means that the patient develops intracranial hypertension without a clear reason or identifiable cause. The word “idiopathic” means that there’s no clear reason or cause.

Is papilledema hereditary?

Papilledema isn’t hereditary.

Do migraines cause papilledema?

Migraines don’t cause papilledema.

How is papilledema diagnosed?

You may find out you have papilledema while your provider is evaluating you for other conditions, like illnesses that cause headaches and vision problems.

Your eye doctor will perform an eye exam with additional tests that may include visual field testing. They’ll be able to see if your optic disc looks swollen.

If your optic disc seems to be swollen, your provider will send you for an imaging examination, most likely a magnetic resonance imaging (MRI) scan.

Your provider may order a lumbar puncture (spinal tap).

Other tests may include blood tests to determine levels of iron and other substances in your blood.

How is papilledema graded (staged)?

Providers might use a version of the Frisén scale to grade or stage papilledema (that rates severity). The stages run from Grade 0 where the disc is normal but the edges may be blurred to Grade V where the whole disc is elevated, and you can’t see the blood vessels in the disc or those leaving the disc.

How is papilledema treated?

For papilledema due to idiopathic intracranial hypertension, your provider may prescribe a carbonic anhydrase inhibitor such as acetazolamide. They may also work with you to achieve and maintain a healthy weight as a long-term strategy.

If these methods don’t work, your provider may suggest surgical procedures to relieve and decrease intracranial hypertension.

For papilledema due to other causes, your provider will treat the underlying cause.

It’s important to treat papilledema because untreated papilledema can lead to partial or complete blindness in one or both eyes.

How can I reduce my risk of papilledema?

You can reduce your risk of developing papilledema by:

• Keeping your blood pressure under control (avoid malignant hypertension).
• Achieving and keeping a healthy weight.

Regular eye exams are important. As with most medical conditions, early diagnosis leads to better outcomes.

What can I expect if I have papilledema?

If you and your provider catch papilledema early, the outlook is good. Your provider will treat the condition primarily by addressing the issue that caused it.

It’s important to treat papilledema because of the potential for blindness and other neurologic effects.

When should I see my healthcare provider about papilledema or its potential causes?

If you have new or worsening headaches, along with nausea and vomiting, you should seek immediate medical care. You should have any change in your vision assessed by a healthcare provider.

What is the difference between papilledema and pseudopapilledema?

Pseudopapilledema means false papilledema. In pseudopapilledema, the optic disc looks elevated, but it’s not because of optic nerve swelling.

A note from Cleveland Clinic

The causes of papilledema can be dangerous. It’s important to seek medical care if you experience any changes in vision, particularly if they occur in association with headaches, nausea and vomiting. Your provider will diagnose the cause and help you find the right treatment.