Welcome to the IH Project


IH has no cure, but there are a few treatments to try to help regulate high intracranial pressure. However, these treatments are very dated and have been used for many years with no major developments.


When one is diagnosed with IH, one of the first treatments tried is a medication called Diamox (or a medication similar to it such as Neptazane, Lasix, and Topamax). Diamox is a carbonic anhydrase inhibitor, which decreases the production of CSF. Decreasing the amount of CSF is a crucial factor in lowering intracranial pressure. Although it helps many people to control their IH symptoms, Diamox comes with many intense side effects that most people experience. Some common side effects are: tingling feelings, usually in the hands and feet;  change in taste, especially when drinking carbonated beverages; frequent urination; lack of appetite; fatigue/drowsiness; weight loss; and weight gain along with many others. Because Diamox is a diuretic, the patient also needs to pay close attention to their potassium level, which diuretics can affect. Sometimes daily potassium supplements are needed.

Surgical treatments

When medication has failed to work the next treatment that is usually done is a shunt insertion. The purpose of shunting is to assist the body in draining CSF to another area where it can be absorbed more efficiently. There are a few different types of shunts. LP (Lumboperitoneal shunts) are the most common in treating IH. A LP shunt is a catheter inserted into the spine that then drains into the abdominal cavity. VP shunts (Ventriculoperitoneal shunt; a catheter inserted into a ventricle in the brain that drains into the abdominal cavity), VA shunts(Ventriculoatrial shunt; a catheter inserted into a ventricle in the brain that drains into the right atrium of the heart), and Cisterna magnum shunts (a catheter inserted into the cervical cistern of the head that drains into the abdominal cavity) are also types of shunts that can be used to treat IH. Although shunts can be very helpful, the rate of complications is high. The most common complications of shunts, especially in LP’s, is shunt failure. Shunts can easily become clogged up, or sometimes the tubing can become kinked. Because of this, there is a high revision rate of 50%. Another dangerous complication with shunting is they can become easily infected and can carry infection throughout your body depending on the type of shunt. It is very clear that more research needs to be done, so that IH patients do not have to live with these dangerous risks.

Another surgical procedure that can be done to treat IH is an Optic Nerve Sheath Fenestration (ONSF). In an ONSF (also known as optic nerve sheath decompression), a small opening is made in the sheath which surrounds the optic nerve, relieving swelling and allowing CSF to drain behind the eyes. Although this procedure does not alleviate headaches, it usually does help to save the patients vision.

information credit goes to IHRfoundation.com