Idiopathic intracranial hypertension (IIH), also known as benign intracranial hypertension (BIH) or pseudotumor cerebri (PTC) is an uncommon disorder characterized by abnormally high pressure of the cerebrospinal fluid (CSF). Either the fluid is being produced at an accelerated rate or its outflow is being slowed; the underlying cause is unknown. The symptoms, which may include headaches, nausea, vomiting, and visual disturbances, resemble those of a brain tumor — thus the name. The patient’s vision may be endangered by papilledema (swelling of the optic disk). The disorder is three times more common in women than in men, and it may last from several months to a lifetime.
None of the available treatments is especially effective, and the high rate of spontaneous recovery makes the evaluation of treatments difficult. Patients are sometimes given corticosteroids and high doses of diuretics to reduce fluid pressure. Frequent lumbar punctures (spinal taps) may be required to drain off CSF. In serious cases surgery is performed to insert a tube to shunt fluid from the brain into the abdominal cavity. As a last resort, when vision is seriously threatened and other treatments have failed, a surgeon may make an incision in the sheath of the optic nerve to relieve the pressure of papilledema.
Lori Horn is a twenty-nine-year-old woman with pseudotumor cerebri who has used marijuana recreationally since the age of eighteen. Here is her story:
About four years ago I decided to quit using marijuana because bills were becoming hard to pay. After five months of abstinence I began to develop severe headaches and disturbances in my vision (spots before my eyes). I went to see an optometrist, thinking I might need glasses. He sent me to a hospital ophthalmologist, who found acute pressure behind my eyes and three pinprick hemorrhages. I was rushed to an emergency room, where a neurologist said I might have a brain tumor. Fortunately, X-rays, CAT scans, blood tests, and a spinal tap all came back negative. At that point I was given the diagnosis of pseudotumor cerebri. The doctors prescribed Motrin [ibuprofen, a non-steroidal anti-inflammatory drug], prednisone [a powerful steroid], and Diamox [acetazolamide, a diuretic].
The prednisone made me extremely moody; my face swelled up and I gained an enormous amount of weight. The Diamox caused muscle cramps and made my leaky bladder worse. Motrin did almost nothing for my headaches. I was told I might need surgery (which didn’t always work) to prevent blindness. I began to live in fear of losing my sight; I had nightmares and cried for hours.
By now it had been eight months since I’d last used marijuana, so I decided to smoke a joint. It was almost magical. For the next two weeks I had no headaches, no disturbances in vision. Doctors even said my eyes looked better (the papilledema had disappeared). When I told my neurologist, he didn’t seem very interested but said, „If it works, use it.“
Although it was against doctors‘ orders, I quit taking all the prescribed medications and began smoking a joint once every few days instead. Now I find that I get headaches and visual disturbances if I go more than a week without a good joint. The more potent the marijuana, the longer my eyes remain healthy. They look so good now that all talk of shunt surgery and spinal taps to relieve pressure has ended.
My family has watched the miracle of my marijuana use, and they know it helps me. I thank God it was there as an alternative to the knife and to drugs like prednisone. I only wish I had a doctor to back me up, but the hospital where I was treated offered me no support, not even written documentation of my self-medication and its miraculous effects. When I heard about you I decided to tell you my story. It touches my heart to find that there really are people who care about people like me. What can I do, where can I go? I’ve been charged with possession once already. I pray it doesn’t happen again.