Oregonian: Headaches Provoke Search By Family
October 16, 2006
by Andy Dworkin
(Editor’s Note: This story originally appeared in the Oregonian)
For years, Jessica Tanne endured the worst headaches she could imagine.
“Migraine medications 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 her 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 that help drain spinal fluid after brain surgeries. Drugs can cause the ailment, including the acne drug Accutane, which Jessica 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 as far as Europe and Africa, Jessica Tanne said. About 85 people have signed up for the conference—enough to fill the room, so the event is closed to more sign-ups.
She 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 non-profit is working on a patient registry that may help track how many people have this condition, the kinds of treatment they get and what happens to them. The group will also help collect tissue from dead people with 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.
Jessica 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 wasn’t designed for that use, and the family hopes that a better medicine can be found for intracranial hypertension patients.
“No drug has been designed to treat these patients,” her father said. “This disorder has fallen through the cracks.”