Idiopathic intracranial hypertension (IIH) is a disorder associated with increased fluid pressure around your brain. This can cause symptoms such as headaches or vision problems.

The word “idiopathic” means that there’s no known cause. It’s also been called benign intracranial hypertension or pseudotumor cerebri, but some experts view these terms as outdated.

Even though anyone can experience IIH, it’s most commonly diagnosed in women between the ages of 20 to 44 with obesity.

Many treatments for IIH are available. If you delay treatment, you could risk complications, including permanent vision loss.

Read on to learn more about IIH and what you need to know if you think you already have it.

There are several symptoms you might experience if you have IIH. Some of the classic symptoms of IIH include:

  • Headaches: These are often painful and recurring and might lead to additional symptoms such as nausea or light sensitivity. People with IIH experience headaches in 98% of cases.
  • Temporary loss of vision: This includes partial or complete loss of vision in one or both eyes. Vision usually returns after a few seconds. Up to 70% of people with IIH have temporary loss of vision.
  • Hearing your pulse: Also called pulsatile tinnitus, you may experience this in one or both ears. Up to 60% of people with IIH report having this symptom.
  • Eye floaters or flashes: Also called photopsia, this symptom occurs in 54% of IIH cases.
  • Persistent vision loss: Up to 32% of people with IIH report vision loss that lasts for an extended period. Most of these instances are linked to a delay in treatment.

The symptoms of IIH overlap with the symptoms of many other conditions, including brain tumors. Many of the diagnostic tools doctors use for IIH help to rule out other disorders.

If a healthcare professional believes you might have IIH, some possible diagnostic tests include:

If, after testing, your doctor can’t diagnose you with anything else and your symptoms still fit the criteria, they may diagnose you with IIH.

There are many options for treating IIH. Not all of them will work for everyone, so you’ll want to consult with a doctor to determine the best treatment plan for you.

Medical treatments for IIH include:

  • lumbar puncture to relieve intracranial pressure
  • weight loss of 5% to 10% of your total body weight
  • medications including carbonic anhydrase inhibitors, diuretics, and corticosteroids

If medical treatments don’t effectively treat your IIH, you might need to have a surgical intervention. Surgeries for IIH focus on relieving pressure.

This may involve implanting a shunt to drain fluid from around your brain. The fluid is redirected to your abdominal cavity.

Treatment may also include a surgical decompression procedure involving the tissues that surround your optic nerve.

The word “idiopathic” means that a condition’s cause isn’t known. Therefore, idiopathic intracranial hypertension is a disorder of increased pressure in your head with an unknown cause.

Most experts believe that the symptoms of IIH are due to a buildup of cerebrospinal fluid (CSF). This fluid usually acts as a protective cushion that surrounds your brain inside your skull. If the volume of this fluid either increases or decreases too much, it can lead to serious neurological problems.

IIH might be caused by your body either producing too much CSF or not properly absorbing CSF, or possibly both. But this is only a theory. More investigation is still needed.

Researchers haven’t discovered the exact cause or causes of IIH yet.

Anyone can have IIH, but it’s much more common among those assigned female at birth. Risk is highest after puberty but before menopause. It’s also higher among people with obesity.

While IIH occurs in about 1 out of 100,000 people in the general population, it’s 20 times more common among young females with obesity.

Experts believe that weight is a less significant factor for people assigned male at birth and for children under the age of 10.

Does intracranial hypertension run in families?

Some research suggests having a family member with IIH increases your risk of also having IIH. This means that IIH may have a genetic component. Family members who both had IIH tended to experience similar symptoms.

However, additional studies are still needed to investigate this further.

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The most effective thing you can do to avoid having IIH is to lose weight if you have obesity or overweight. An increased risk of IIH has also been linked to rapid weight gain, even for people without obesity.

There are some classes of medications that could increase your risk of IIH, including:

Be sure to consult with a doctor before deciding to stop taking any of these medications.

Everyone’s experience with IIH will be unique to their own circumstances. Your outlook often depends on:

  • how quickly the symptoms appeared
  • how much vision loss has occurred
  • the severity of papilledema, or swelling of your optic nerves

It’s not unusual for people with IIH to experience symptoms for months or even years. This can even happen if you receive treatment quickly. For some people, IIH responds well to treatment but returns later.

After being treated for IIH, you can expect to have regular examinations with an eye doctor as well as a primary care physician to monitor for signs of permanent vision loss or a recurrence of IIH.

Idiopathic intracranial hypertension is a condition where you have an increase in fluid pressure around your brain, and the cause is unknown. Headaches and vision loss are common symptoms of IIH.

It most frequently affects people assigned female at birth who are post-pubescent and premenopausal, especially those with obesity. Still, anyone can have IIH.

If you think you might have IIH, getting treatment quickly can help to prevent serious complications. Consult with a doctor if you believe you have IIH.