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Common Misconceptions

There are many misconceptions surrounding IIH. These are some of the most common ones.

With a greater understanding of IIH, tailored treatment options arise. Acetazolamide is a first-line medication that can decrease the amount of cerebrospinal fluid (CSF)) production, thereby decreasing intracranial pressure, but is not a curative therapy. Carbonic anhydrase inhibitors and other classes of medications decrease production of CSF or help eliminate extra fluid from the body in an effort to decrease intracranial pressure. Unfortunately, these medications can only maintain patients in remission of this syndrome. Once a patient is taken off this therapy, symptoms return in most cases. For patients who fail therapy with acetazolamide or who cannot tolerate the medication, other treatment options exist.

Treatment options for IIH include surgery, including the placement of a shunt to drain fluids, and venous sinus stenting. These interventions each have their own risks and benefits and should be a part of your discussion with your treating physician. 

  1. Wall A, Lee A. Idiopathic intracranial hypertension (pseudotumor cerebri): Prognosis and treatment. UpToDate. Reviewed September 21, 2021. Accessed May 12, 2022. https://www.uptodate.com/contents/idiopathic-intracranial-hypertension-pseudotumor-cerebri-prognosis-and-treatment  

Obese women who had a decrease of 5-10% of total body weight experienced a reversal of symptoms associated with IIH1. Resolution of papilledema was the most notable symptom associated with weight loss2. Unfortunately weight gain causes symptoms of IIH to return. 

  1. Batra N, Prashant P, Wall M. Weight Management in Idiopathic Intracranial Hypertension. EyeRounds.org. Accessed June 2, 2022. https://webeye.ophth.uiowa.edu
  2. Kupersmith M, Gamell, L, Turbin R, et. al. Effects of weight loss on the course of idiopathic intracranial hypertension in women. Neurology. 1998;50(4):1094-1098.

Although there have been studies showing a link between IIH and contraceptives, there are also studies that find no association. The use of oral contraceptives (OCPs) and intrauterine devices (IUDs) is common in women of childbearing age. This is the same demographic as women who are susceptible to IIH. A recent study had access to 27 years of medical records and information on women who were diagnosed with IIH. After close review of all factors contributing to IIH, compared to control groups, they concluded that there was no association with OCP or IUD use and IIH.1

Every person with idiopathic intracranial hypertension should receive individualized medical care. A specialist will determine if it is safe for one with IIH to take these forms of birth control or use alternative options.

  1. Kilgore K, Lee M, A, Leavitt J, et al. A Population-Based, Case-Control Evaluation of the Association between Hormonal Contraceptives and Idiopathic Intracranial Hypertension. Am J Opthalmology. January 2019;197:74-79.

IIH affects women and men. Around 2 out of every 100,000 men are diagnosed with IIH. This number may be higher but, with the misconception that IIH is a condition only seen in women, men are often underdiagnosed.₁

  1. Miah L, Strafford H, Fonferko-Shadrach B, et al. Incidence, Prevalence, and Heath Care Outcomes in Idiopathic Intracranial Hypertension. 

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