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Idiopathic Intracranial Hypertension (IIH)

Idiopathic Intracranial HypertensionIf you experience an ongoing headaches and difficulty maintaining normal vision, the disorder idiopathic intracranial hypertension (IIH) may be present.

Head pain and inflammation of the optic disc were once thought to mimic the diagnosis of a brain tumor, prior to MRIs and CT scans. Once examined, however, there would be swelling without any sign of abnormal growth, hence the alternate name, pseudotumor cerebri.

Also referred to as benign intracranial hypertension (BIH), idiopathic intracranial hypertension (IIH) is a condition where cerebrospinal fluid pressure is increased, as it cannot drain properly. The outflow of cerebrospinal fluid is blocked (for one reason or another which is not always clear), creating intense pressure within the skull.

Ultimately, IIH can lead to vision loss and blindness after an extensive period of such continual force. If the disorder develops into papilledema, inflammation of the optic disc which can impair the optic nerve, the patient may suffer such obstacles with vision. While the disease is not fatal, it can affect patients for a very long time, requiring continual treatment. Vision loss is also frequent in many cases.

The disorder is mainly found in younger, obese women, leading some to believe it may be linked to hormones. It has also affected other overweight individuals, notably right after gaining weight. Weight, age, and gender are not the only contributing factors to IIH, as the disorder can form in people who take certain medications or have been born with a heightened risk. Prescription medications are not the exclusive culprit, either. Medications that have been linked to increasing a person’s risk of IIH include steroids (when in the process of weaning off), high doses of vitamin A, and tetracycline – an antibiotic. Others may have been born with a condition in which the vein that drains blood from the brain is narrowed.


Symptoms of IIH

As mentioned, elevated pressure inside the head can cause an understandable headache. Other symptoms include vision loss, which can occur in varying degrees. The headache typically is located in the back of the neck, and is often consistent or dull, but may be pounding at times. They often are worse at night or early in the morning. Headaches can become intensely painful, but differ from migraines in that they can wake the patient while sleeping. Pain can also worsen with changes in movement such as bending or stooping. Severe headaches and intense pressure may also be accompanied by nausea and vomiting. A rushing sound in the ears can also become familiar.

If the optic nerve has swollen, it may lead to graying, blurring, or dimming of vision over time. Those who are experiencing eye problems may lose some peripheral vision, or have several second intervals of visual obscuration, usually while bending or stooping. Double vision can also result from nerve damage when a patient has very high intracranial pressure.

If you experience the following, you should contact your doctor immediately for tests and screenings.

  • Headache, mainly at the back of head
  • Vision loss or changes
  • Nausea and vomiting, usually with headache


IIH Treatment

Getting your IIH under control is possible, but it isn’t very comfortable. Your treatment may involve multiple lumbar punctures (spinal tap) to regulate the pressure of cerebrospinal fluid. Medications may also be prescribed in order to reduce pressure from the fluid, and weight loss may help some patients. Even a mild weight reduction can help the condition, and therefore nutritionists, weight-loss medications, and other programs may be suggested. Other, more invasive treatments, are also available to prevent permanent vision loss. One surgical procedure involves opening the sheath enclosing the optic nerves with small holes or multiple slits, to reduce pressure and avoid vision problems. With serious cases of IIH, a tube may be implanted to drain spinal fluid from the brain.


How Your Medical Coverage Can Help

Proper diagnosis and treatment of IIH requires a solid, ongoing relationship with numerous healthcare providers. In order to connect with the doctors, nutritionists, and surgeons you may eventually be referred to, health insurance will be a beneficial tool. Although with such a condition, individual and small group insurers may not want to provide you coverage, your group plan (or health reform in a few months) can get you the care you need. From the initial diagnostic testing, which includes an MRI scan, a spinal tap, and lab work thereafter, to your prescribed course of treatment, a health plan makes the process much less expensive and difficult (in most cases).

For those in need of a weight loss program, many insurers include a wellness program for members to lose weight effectively, for free. If your plan does not include such a program, you can still save money on weight loss and adopting a healthy lifestyle with free apps, a low-cost, balanced diet, and regular activity. However, before you begin any of these endeavors, you still should consult a physician to direct your needs, and only a health plan can get you reduced rates with in-network providers. IIH is necessary to keep under control, and thanks to the healthcare law, more people with this condition will be able to receive ongoing care and monitoring in order to reduce its effects.

In the meantime, if you do not have coverage and are experiencing these symptoms, visit a local health clinic to get diagnosed for a lower cost. For a full list of community health centers in your area, check your state‘s public assistance resources.





1. Johns Hopkins Medicine. Idiopathic Intracranial Hypertension (IIH).

2. Mark S. Gans, MD, Hampton Roy Sr., MD. Medscape Reference. Idiopathic Intracranial Hypertension.

3. North American Neuro-Opthamology Society. Pseudotumor Cerebri.


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