New data - A conference at OHSU on intracranial hypertension draws international interest
For years, Jessica Tanne endured the worst headaches she could imagine.
"Migraine drugs do not work on these headaches. Even pain medications, like morphine," fall flat, the Vancouver woman said.
Drugs failed because Tanne's skull was literally packed with high-pressure fluid. Her headaches started in 1995. But it took many visits to the hospital, bouts of neck aches and ringing ears and several spinal taps before doctors diagnosed Tanne's problem in 1998: intracranial hypertension.
Intracranial hypertension hits when the cerebrospinal fluid that normally bathes the spine and brain builds up in unusually large amounts. Everyone makes the fluid all the time, said Dr. Emanuel Tanne, Tanne's father and a retired ophthalmologist. But most people get rid of it about as fast as they make it. Not people with intracranial hypertension -- their fluid pressure builds, often causing terrible pain and damaging the optic nerve, which can cause blindness.
Many things can cause the condition, from space travel (many astronauts have a temporary boost in spinal-fluid pressure when they hit low gravity) to blockages in shunts, devices that help drain spinal fluid after brain surgeries. Drugs can cause the ailment, including the acne drug Accutane, which Tanne started taking before the headaches began. Some cases arise for no obvious cause.
After the diagnosis, the Tanne family learned more about the illness -- including the fact that no drugs are approved to treat it, and that the two surgeries to fix it haven't changed in many decades. The family decided patients needed more help and founded the Intracranial Hypertension Research Foundation in Vancouver in 2001.
This weekend, the foundation will hold its first conference at Oregon Health & Science University. Doctors and scientists will present research about the condition to dozens of patients, some coming from Europe and Africa, Tanne said. About 85 people have signed up for the conference, she said -- enough to fill the room, so the event is closed to more sign-ups.
Tanne hopes the conference will become an annual event. But it's just part of the foundation's work, her father said. Working with OHSU's Casey Eye Institute, the nonprofit is working on a patient registry that may help track how many people suffer this condition, the kinds of treatments they get and what happens to them. The group also will help collect samples of brain tissue from dead people who had the condition, sending them to a tissue bank where researchers can study them.
The nonprofit is also working with the University of Chicago to create an animal model of the ailment, Dr. Tanne said. That could help show how the condition develops and progresses, and hopefully help find drugs that can ease the pressure and pain.
Tanne, now 33, is one of several people who take an old diuretic drug, designed for heart problems, to try to combat the high spinal-fluid pressure. So far, that has kept her from needing surgery, she said. But the drug was not designed for that use, and the family hopes a better medicine can be found for intracranial hypertension patients.
"No drug has been designed to treat these patients," Dr. Tanne said. "This disorder has fallen through the cracks."
Andy Dworkin: 503-221-8239; email@example.com