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Intracranial Hypertension Fast Facts

Idiopathic intracranial hypertension (IIH) is a condition characterized by an increase of pressure in the fluid surrounding the brain.

IIH is also sometimes called pseudotumor cerebri because its symptoms can mimic those of a brain tumor.

IIH is most prevalent in obese women of childbearing age.

One study found that the incidence of IIH in the United States doubled between 1990 and 2014. This increase paralleled the increase in obesity rates during the same period.

Approximately 1.8 out of every 100,000 people are affected by intracranial hypertension. Approximately 100,000 Americans currently suffer from the disorder.

What is Intracranial Hypertension?

Idiopathic intracranial hypertension (IIH) is a condition in which the cerebral spinal fluid (CSF) surrounding the brain is under higher than normal pressure. The increased pressure can cause swelling and damage to nerve tissue, especially the optic nerve. It can also result in the deformation of other parts of the brain, such as the pituitary gland and the sella turcica.

“Idiopathic” means that the condition doesn’t have an obvious cause. Some cases of intracranial hypertension are caused by brain tumors, blood clots, drug reactions, or other conditions, but IIH doesn’t have a discernible cause.

The symptoms of IIH are often similar to symptoms of some types of brain tumors. Because of the similarity, the condition is sometimes called pseudotumor cerebri (meaning “false brain tumor”), but IIH is currently the more commonly used name.

Symptoms of Intracranial Hypertension

The most common symptoms of IIH include:

  • Severe headaches, often directly behind the eyes
  • Temporary total vision loss in one or both eyes
  • Blind spots
  • Loss of peripheral (side) vision
  • Double vision
  • Flashes of light in the field of vision
  • Ringing or whooshing sound in the ears that pulses with your heartbeat
  • Nausea and/or vomiting
  • Dizziness
  • Neck pain
  • Shoulder pain

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

What Causes Intracranial Hypertension?

The cause of idiopathic intracranial hypertension is not currently known. Several risk factors increase the risk of developing the disorder:

  • Sex. Women are disproportionately affected by IIH. Men account for only 5% of cases.
  • Age. Women are most likely to be affected between the ages of 20 and 50.
  • Obesity. IIH is most common in people with a body mass index (BMI) greater than 30. A weight gain of 5-15% of total body weight also may put a person at greater risk, even if their final body weight is below the obesity threshold.

Secondary Intracranial Hypertension

In contrast to IIH, secondary intracranial hypertension can be linked to an underlying condition or cause. Common causes of secondary intracranial hypertension include:

  • Reactions to antibiotics such as doxycycline, minocycline, or tetracycline
  • Reaction to growth hormone
  • Excessive vitamin A consumption
  • Brain tumors
  • Obstructive sleep apnea
  • Systemic lupus erythematosus (SLE)
  • Chronic kidney disease
  • Polycystic ovary syndrome
  • Blood-clotting disorders
  • Anemia

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

Is Intracranial Hypertension Hereditary?

Scientists have not yet discovered a definite connection between intracranial hypertension and genetics. However, in a small number of cases, IIH has been found in multiple generations of the same family. In these cases, no common underlying causes for the disorder could be found, suggesting that there might be a genetic component to at least some rare cases of IIH.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

How is Intracranial Hypertension Detected?

Early detection and diagnosis of intracranial hypertension are important for more than one reason. The symptoms of IIH are similar to those of potentially life-threatening conditions, so ruling out those conditions as soon as possible is vital. In some cases, IIH can cause rapid, permanent vision loss, and in these cases, early treatment may help prevent permanent damage.

IIH is often first noticed by optometrists, ophthalmologists, or general practitioners who identify swelling of the optic nerve (papilledema) during an eye exam. In many cases, the patient may not yet be experiencing any other symptoms when the papilledema is detected.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

How is Intracranial Hypertension Diagnosed?

When a doctor suspects intracranial hypertension, they will work through a series of steps to either confirm or rule out the diagnosis. The diagnostic process will usually include:

  • Physical exam. This exam will focus on ruling out conditions other than IIH that could be causing the symptoms. The exam may also look for indications of an underlying cause of secondary IH.
  • Neurological exam. This exam will test neurological functions such as reflexes, balance, muscle strength, and sensory perception. In the case of IIH, the exam is typically normal except for the visual symptoms.
  • Vision tests. The doctor will conduct tests to look for papilledema, blind spots in the field of vision, and problems with peripheral vision.
  • Imaging exams. Computerized tomography (CT) and/or magnetic resonance imaging (MRI) may be used to look for conditions, such as a brain tumor or brain injury, that may be causing the symptoms.
  • Lumbar puncture (spinal tap). This test examines the cerebrospinal fluid for abnormalities and increased pressure.

PLEASE CONSULT A PHYSICIAN FOR MORE INFORMATION.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

How is Intracranial Hypertension Treated?

The cause of intracranial hypertension is not known, so no direct treatment for the disorder is available. Treatment programs typically include a combination of lifestyle changes and medication. In some severe, rapidly progressing cases, surgery may be required.

  • Monitoring. Regular vision and eye exams will be recommended to watch for any worsening of symptoms or progressive vision loss.
  • Weight loss. Because IIH has been linked to obesity, doctors will usually recommend that obese IIH patients lose weight, and a low-sodium is also usually recommended. In cases where lifestyle changes don’t produce weight loss, weight-loss surgery may be recommended. Although weight loss does often correspond with an easing of symptoms, it does not always have an effect. Some patients report a recurrence of symptoms if they regain the weight.
  • Medication. The glaucoma drug acetazolamide helps to decrease the production of cerebrospinal fluid and, as a result, may help reduce the symptoms of IIH. Other diuretics, drugs that encourage fluid reduction by increasing urination, may also be prescribed.

Surgical Treatments

Surgery is usually only recommended in cases where IIH is causing rapid deterioration of vision. Surgical interventions can include:

  • Optic nerve sheath fenestration. This surgery attempts to decrease the pressure of the cerebrospinal fluid on the optic nerve. During the procedure, the surgeon makes an opening in the membrane that surrounds the optic nerve directly behind the eye. The opening allows fluid to drain away. The surgery carries the risk of making vision problems worse.
  • Therapeutic shunting. This procedure involves inserting a long, thin tube into the inner cavities of the brain. Excess fluid is allowed to drain through the tube, thereby decreasing pressure within the skull. This procedure is typically only considered when other treatments have been unsuccessful at relieving symptoms.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

How Does Intracranial Hypertension Progress?

The progression of intracranial hypertension varies widely from patient to patient. In some cases, the symptoms resolve on their own. Most cases respond well to treatment, and symptoms resolve within a few months. Sometimes the symptoms recur later. Most cases do not require surgery.

In about 5-10% of cases, the symptoms are progressive, and vision loss gets worse over time. In a small number of cases, vision loss can be complete and permanent.

Although the symptoms may be severe in the worst cases, IIH does not typically lead to life-threatening complications.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

How is Intracranial Hypertension Prevented?

Absent of any definitive way to address the underlying cause of IIH, the best strategy for preventing the disorder is to address its risk factors. Lifestyle changes that may decrease the risk of IIH include:

  • Weight loss if you’re obese
  • Avoidance of rapid weight gain
  • Low-sodium diet
  • Regular exercise

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

Intracranial Hypertension Caregiver Tips

Dealing with intracranial hypertension can be an exhausting endeavor, both for the sufferer and for their caregivers. Keep these tips in mind as you help your loved one to cope with IIH:

  • Be empathetic. The symptoms of IIH are not outwardly visible, but they can be debilitating. Pain can make it difficult for your loved one to function, and the prospect of vision loss is terrifying for most people. Acknowledge what your loved one is going through, and offer any help you can.
  • Be supportive. The prescribed treatment plan for IIH almost always involves radical changes to your loved one’s lifestyle. Making such changes is not easy for anyone, but they’re easier when you’re there to offer encouragement, support, and solidarity.
  • Be an educator. Learn as much as you can about IIH (and your loved one’s unique experience of the disorder) so that you can help others to understand your loved one’s disorder. There will likely be times when you have to be the one to communicate with healthcare providers, and you can best serve as your loved one’s advocate when you’re educated about the disorder.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

Intracranial Hypertension Brain Science

Cerebrospinal fluid surrounds brain tissue, providing protection from injury, nourishment for cells, and elimination of waste. CSF is produced in the brain and, under normal conditions, is continuously reabsorbed by the body to maintain a constant pressure within the skull. In the case of intracranial hypertension, it appears that the normal process of reabsorption is disrupted, allowing excess fluid to build up in the skull. The cause and mechanism of the disruption remain unknown.

Some scientists believe that the strong connection between IIH, sex, and obesity suggests that hormones play a role in the development of the disorder. Ongoing research is looking for trends in hormonal levels in IIH patients.

Other research is focusing on the fact that IIH patients often have an abnormal narrowing of blood vessels in their brains. A surgical procedure called venous sinus stenting, which helps to increase blood flow within the brain, has shown promise in the treatment of IIH symptoms. However, it is unclear if the blood vessel abnormalities are a cause of IIH or if they themselves are caused by the increased CSF pressure.

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

Intracranial Hypertension Research

Scientists are working on several research projects to expand on what is known about Intracranial Hypertension.  The research will improve knowledge about the factors that increase the risk for Intracranial Hypertension, as well as the causes, and best treatments, and will aid people living with Intracranial Hypertension and their caregivers.

We are currently gathering the information required to support projects such as Evaluating Raised Intracranial Pressure Using MR Elastography, Venous Sinus Stenting With the River Stent in IIHand Operative Procedures vs. Endovascular Neurosurgery for Untreated Pseudotumor Trial (OPEN-UP).

*The medical information we gather and publish is vetted and intended to be up to date, accurate and express a spectrum of recognized scientific and medical points of view. The information comes from a nucleus of informed scientists, medical doctors, peer-reviewed scientific journals and the National Institute of Health. Please note, differing points of view among scientists and physicians are common. Every effort is employed to ensure the accuracy of these different points of view. That notwithstanding, it is incumbent on persons using this information to consult with his/her physician before reaching any conclusions. Our medical information and publications are not intended to be a substitute for consultation with one’s physician.

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