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Idiopathic Intracranial Hypertension

What is idiopathic intracranial hypertension?

Idiopathic intracranial hypertension (IIH) is a disorder related to high pressure in the brain. It causes signs and symptoms of a brain tumor. It's 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 reabsorbed, the CSF can build up. This can cause symptoms like those of a brain tumor. 

What causes idiopathic intracranial hypertension?

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

  • Birth control pills

  • Certain antibiotics

  • Chemotherapy medicines

  • 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

  • Feeling dizzy or nauseated

  • Vomiting

  • Neck stiffness

  • Trouble walking

  • Frequent headaches, often along with nausea or vomiting

  • Persistent ringing in the ears (tinnitus)

  • Forgetfulness

  • Depression

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

How is idiopathic intracranial hypertension diagnosed?

A physical exam and a few tests can help identify IIH. Diagnosis involves ruling out other health problems. These include 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

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How is idiopathic intracranial hypertension treated?

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

  • Losing weight, if needed

  • Limiting fluids or salt in the diet

  • Surgically putting a special tube (shunt) in the brain or lumbar spine to drain fluid and ease pressure

  • Having a spinal tap done to remove fluid and reduce pressure

  • Taking medicines, such as water pills (diuretics). These help the body get rid of extra fluid.

  • Having surgery on the optic nerve to ease pressure and save vision

What are possible complications of idiopathic intracranial hypertension?

Untreated IIH can result in permanent problems. These include 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 keep track of symptoms. Also to 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. Losing weight is very hard, but don't give up. Ask your healthcare provider for help and support if these strategies don't help you lose weight.

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.

Key points about idiopathic intracranial hypertension

  • Idiopathic intracranial hypertension is a disorder related to high pressure in the brain.

  • Even though IIH isn't a brain tumor, it can still cause serious health problems.

  • Seeing a healthcare provider right away to diagnose symptoms and begin treatment can help to prevent complications.

  • Eating a healthy, low-fat diet and getting plenty of exercise may help reduce your risk for IIH.

Next steps

Tips to help you get the most from a visit to your healthcare provider:

  • Know the reason for your visit and what you want to happen.

  • Before your visit, write down questions you want answered.

  • Bring someone with you to help you ask questions and remember what your provider tells you.

  • At the visit, write down the name of a new diagnosis, and any new medicines, treatments, or tests. Also write down any new instructions your provider gives you.

  • Know why a new medicine or treatment is prescribed, and how it will help you. Also know what the side effects are.

  • Ask if your condition can be treated in other ways.

  • Know why a test or procedure is recommended and what the results could mean.

  • Know what to expect if you do not take the medicine or have the test or procedure.

  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.

  • Know how you can contact your healthcare provider if you have questions, especially after office hours or on weekends.