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Idiopathic Intracranial Hypertension
Idiopathic IH is not usually life threatening, but can be a lifelong problem. While many people find their symptoms are relieved with treatment, but the symptoms can come back and can have a significant impact on your life.
IIH does not normally affect life expectancy. The major complications from IIH arise from untreated or treatment-resistant papilledema. In various case series, the long-term risk of one's vision being significantly affected by IIH is reported to lie anywhere between 10 and 25%.
What is idiopathic intracranial hypertension?
Idiopathic intracranial hypertension (IIH) happens when high pressure around the brain causes symptoms like vision changes and headaches. “Idiopathic” means the cause isn’t known, “intracranial” means in the skull, and “hypertension” means high pressure.
IIH happens when too much cerebrospinal fluid (CSF) — the fluid around the brain and spinal cord — builds up in your skull. This puts extra pressure on your brain and on the nerve in the back of your eye, called the optic nerve.
If you notice changes in your vision, talk to your eye doctor. The doctor can figure out if your symptoms are related to IIH or another condition. If it’s IIH, there are treatments that can help with the symptoms.
What are the symptoms of IIH?
Symptoms can include:
- Headaches
- Tinnitus (ringing in the ears)
- Temporary blindness
- Double vision
- Blind spots
- Neck and shoulder pain
- Peripheral (side) vision loss
Did you know?
IIH symptoms are often similar to the symptoms of a brain tumor — so IIH is sometimes called pseudotumor cerebri, or “false tumor.” About 19 out of 20 people with IIH are women.
Am I at risk for IIH?
IIH is rare, but some people are at higher risk. It’s most common in women ages 20 to 50.
Being overweight or obese also makes IIH more likely. You may be at higher risk if you have a body mass index (BMI) greater than 30, or if you recently gained weight. You can calculate your BMI using CDC’s online calculator.
What causes IIH?
Experts don’t know what causes IIH. But there are other types of intracranial hypertension that do have known causes:
- Acute intracranial hypertension happens suddenly, usually because of an accident or stroke
- Chronic intracranial hypertension develops over time, usually because of a health problem like a blood clot or brain tumor, or from taking certain medicines
How will my eye doctor check for IIH?
Your eye doctor will do several tests to check for signs of IIH, including a dilated eye exam to look at the back of your eye and a visual field test to check your peripheral vision.
Your eye doctor may also want you to see a neurologist (a doctor specializing in the brain). The neurologist will check to make sure your symptoms aren’t happening because of another health problem, like a brain tumor. The neurologist may do tests including:
- A physical exam
- Brain imaging, like a CT or MRI scan
- A spinal tap (lumbar puncture) to test your CSF
What's the treatment for IIH?
For most people, IIH symptoms get better with treatment. Treatments include:
Weight loss. For people who are overweight or obese and have IIH, weight loss is usually the first treatment. Losing about 5 to 10 percent of your body weight can help lessen your symptoms — for example, if you weigh 200 pounds, that means losing about 10 to 20 pounds. Talk with your doctor about safe, sustainable ways to lose weight.
Medicine. Your doctor may recommend a medicine called acetazolamide (Diamox) in addition to weight loss. This medicine helps your body make less CSF.
Surgery. If other treatments don’t work, your doctor might suggest surgery to help relieve the pressure. In shunt surgery, doctors make a small hole and add a thin tube, called a shunt, to help extra fluid drain from around your brain into the rest of your body. There is also an eye surgery where doctors make a small hole in the covering around the optic nerve.
What's the latest research on IIH?
Researchers are studying what causes IIH, including how genes and hormones might play a role.
In 2010, NEI funded a clinical trial to test the medicine acetazolamide (Diamox) in IIH patients with mild vision loss. This trial helped to prove that acetazolamide, along with a weight loss plan, can help to restore some vision in people with IIH. It also helped create clear guidelines for doctors on how to prescribe acetazolamide for patients with IIH.
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