Idiopathic intracranial hypertension (IIH) is a perplexing condition that has eluded scientific understanding for years. It affects an estimated two out of every 100,000 people, and a rising number of cases are diagnosed every year. Yet its causes and effects remain shrouded in mystery, and the hunt for effective treatments continues. Fortunately, recent research is beginning to offer some clues that may help answer important questions about the disorder.

IIH Explained

IIH occurs when cerebrospinal fluid (CSF) builds up in the brain and subjects sensitive brain tissue to abnormally high pressure. The condition causes symptoms similar to a brain tumor, including headaches, dizziness, nausea, and vision impairment. Vision problems can eventually lead to blindness in severe cases. Because of the overlap of symptoms between tumors and IIH, the condition is sometimes called pseudotumor cerebri–Latin for “false brain tumor.”

The Search for Causes

The cause (or causes) of IIH are still unknown. Some cases of intracranial hypertension are linked to obvious triggers, including some medications (acne medications, steroids, and others) and diseases (lupus, leukemia, meningitis, etc.). But as the word “idiopathic” in its name makes clear, IIH does not have an identifiable cause.

In searching for a cause, some scientists have focused on understanding who most often suffers from IIH. It is much more common in women than in men, particularly common in overweight young adult women.

A recent study has broken down the demographics of IIH risk even further. The study, published in the journal Neurology, found that risk was higher for Black and Hispanic women. Women with the condition were also more likely to live in low-income areas classified as “food swamps,” where food sources with low nutritional value (fast food restaurants, etc.) are plentiful, but high-quality food sources are scarce.

These results seem to confirm some long-standing suspicions about IIH–that lack of access to a healthy diet plays a role in the prevalence of the condition–but it may raise other questions. The study concluded, for example, that the elevated risk for Black and Hispanic women was higher than could be explained by socioeconomic differences. However, for the question of why that was so, the study’s authors had no answer.

Intracranial Hypertension

Treatment of intracranial hypertension often involves medications that reduce the production of CSF in an attempt to decrease fluid pressure in the brain. However, these treatments are not always successful and can have significant side effects. Some studies have concluded that treatment with medication alone is unlikely to control the symptoms of IIH. The most reliable way for a person with the condition to manage the disease is to lose weight.

However, sustained weight loss is difficult, especially for people with limited access to nutritious foods and organized weight-loss support programs. Nevertheless, a recent study in the UK found a potential bright spot in the quest for an effective treatment.  The study found that bariatric surgery was more successful than weight loss programs in delivering sustained weight loss and relief from IIH symptoms for many of its participants.

A Treatment for Persistent Headaches

For people with IIH, some symptoms may continue even when others are brought under control. For example, treatment programs often aim to alleviate one of IIH’s most serious symptoms, swelling of the optic nerve called papilledema, which can lead to blindness. However, even when papilledema is controlled, many patients still experience one of the disorder’s most debilitating symptoms: chronic headaches or migraines.

A study of a new migraine drug has provided some hope for IIH patients who continue to struggle with chronic headaches. The study found that erenumab, a self-injectible medication, significantly reduced the impact of headaches on its participants, including a reduction of both headache frequency and severity.

Working to Understand IIH

The process of understanding IIH has been a slow evolution. At one time, the disorder was widely thought to be insignificant.  Some in the medical community were skeptical of its very existence as a distinct condition. Fortunately, that perception has changed, and a sense of urgency has replaced the slow pace of research. IIH is an estimated ten times more common among obese young women than among the general population, and its impact on the lives of those women is undeniable. For those suffering from IIH, every answer to a question about this mysterious disease is a cause for hope.

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