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Learning About Intracranial Hypertension (aka Pseudotumor Cerebri)

Intracranial hypertension (IH) is a headache disorder where the body cannot effectively absorb or drain CSF. It is caused by too much cerebrospinal fluid (CSF) pressure inside the skull. Also referred to as benign intracranial hypertension and pseudotumor cerebri, many people with headaches fear IH is the cause. The most common symptoms are:

  • Severe headache
  • Visual changes
  • Whooshing noise in one or both ears that is correlated with the pulse (aka pulse-synchronous tinnitus)

Whether you’ve been diagnosed with IH, are worried you might have it or just want to learn more, the Intracranial Hypertension Research Foundation‘s website is the place to go. Created by a retired ophthalmologist and his wife after their daughter was diagnosed with the illness, the foundation supports medical research and is an educational resource for patients, families and medical professionals. Exploring a Medical Mystery is an introduction to the foundation and the disorder.

The Intracranial Hypertension Research Foundation is also building a registry of people who have IH. Researchers can use the database as a foundation and recruit study participants. It also documents the illness and its effects, which helps teach medical professionals, public policy makers and the general public about IH. If you have IH, please consider registering.

I’d like to learn more about IH too. Please share your thoughts in a comment below or on our online support group and forum.

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Extreme Makeover Home Edition Builds New Home for Chiari Advocate

Julie Carter and her three daughters all have Chiari malformation, a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal, which causes severe headaches. Nearly a half a million dollars in debt from brain surgeries, they lived in a refurbished chicken coop. An advocate for Chiarians and founder of Chiari People, Julie and her family have a new home courtesy of Extreme Makeover Home Edition.

Chiari has more than 85 possible symptoms and is frequently misdiagnosed as migraine or a host of other headache disorders. Other conditions associated with Chiari include syringomyelia, scoliosis, tethered spinal cord and pseudotumor cerebri.

The show’s executive producer said they received more nominations for Julie than they ever have for any one person. The builder of the home has an excellent profile of Julie Carter and day-by-day photos of the project. Some places to learn about Chiari malformation:

If you know of good Chiari resources, please leave a comment.

The show airs on ABC this Sunday, October 21.