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Pseudotumor Cerebri (Idiopathic Intracranial Hypertension)

Idiopathic intracranial hypertension, or pseudotumor cerebri, is a disorder that is caused by a buildup of pressure from too much cerebrospinal fluid in the brain.

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Our experts know that specialized care and innovative treatment options deliver relief from chronic pain. At UC Health, we have built a team of highly trained subspecialists that offer hope in the form of thorough, thoughtful assessment and diagnosis for headaches and facial pain, as well as a wide range of the latest treatment options backed by research.

To schedule an appointment, please call the UC Health Headache & Facial Pain team at 513-475-8730.


Understanding Pseudotumor Cerebri (Idiopathic Intracranial Hypertension)

What is idiopathic intracranial hypertension?

Idiopathic intracranial hypertension (IIH) is a disorder related to high pressures of spinal fluid in the brain. It causes signs and symptoms of a brain tumor. It is also sometimes called pseudotumor cerebri or benign intracranial hypertension.

The fluid that surrounds the spinal cord and brain is called cerebrospinal fluid or CSF. If too much fluid is made or not enough is re-absorbed, the CSF can build up.


What causes idiopathic intracranial hypertension?

Experts don't know why IIH occurs. Some medicines have been linked to a higher risk of it. These include common medicines like:

  • Birth control pills.
  • Certain antibiotics.
  • Chemotherapy drugs.
  • Steroids.
  • Some acne medicines.

What are the symptoms of idiopathic intracranial hypertension?

The symptoms of IIH mimic those of a true brain tumor. The main sign is unusually high pressure inside the skull. This is known as intracranial hypertension.

Other symptoms include:

  • Changes in eyesight, such as blurry vision or double vision.
  • Vision loss, especially in the peripheral vision.
  • Frequent headaches, often along with nausea or vomiting. The headaches are worse when you first wake up in the morning. Bending over, coughing, bearing down and sneezing often make the headache worse. 
  • Persistent ringing in the ears (tinnitus).
  • Forgetfulness.

These symptoms may look like other health problems. Always see your healthcare provider for a diagnosis.

You may find that certain symptoms increase when you're exerting yourself. Exercise tends to raise the pressure in the skull.

Who is at risk for idiopathic intracranial hypertension?

Anyone can develop IIH. But some people are at higher risk for it, such as:

  • Women of childbearing age (20 to 45 years).
  • Overweight people.
  • People who have a thyroid condition or chronic kidney failure.
  • Those that take medications that can cause this headache disorder (see above).

How is idiopathic intracranial hypertension diagnosed?

A physical exam and a few tests can help identify IIH. Diagnosis involves ruling out other health problems, including a brain tumor. You may need these tests:

  • Brain imaging such as MRI or CT scans.
  • Spinal tap (lumbar puncture) to withdraw a sample of fluid from around the spine for testing pressure.
  • Exam to test vision and check the back of your eye.

How is idiopathic intracranial hypertension treated?

Treatment can vary based on what is causing the fluid to build up inside the skull. Treatment options include:

  • Losing weight, if needed.
  • Limiting fluids or salt in the diet.
  • Taking medicines, such as water pills (diuretics). These help the body to get rid of extra fluid.
  • Having a spinal tap done to remove fluid and reduce pressure every several months to relieve the pressure.
  • Sometimes surgery is necessary. One surgery is called a shunt and is when a tube is placed in the chambers of the brain that have the spinal fluid to drain fluid and ease pressure.  Another surgery is called optic nerve fenestration and is when they put a hole in the lining of the optic nerve in the eye. This is used to prevent visual loss that can occur from this headache type.

What are the possible complications of idiopathic intracranial hypertension?

Untreated IIH can result in permanent problems such as vision loss. Have regular eye exams and checkups treat any eye problems before they get worse.

It's also possible for symptoms to occur again even after treatment. It's important to get regular checkups to help monitor symptoms and screen for an underlying problem.

Can idiopathic intracranial hypertension be prevented?

Obesity has been linked to IIH. So eating a healthy, low-fat diet and getting plenty of exercise may help reduce your risk for the condition.

When should I call my healthcare provider?

Any changes in vision should be checked out by a healthcare provider right away. Diagnosis and treatment can help prevent long-term complications such as vision loss.

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