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Learning About Intracranial Hypertension (aka Pseudotumor Cerebri)
By Kerrie | March 25, 2008
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.
Topics: Community, Treatment |
March 25th, 2008 at 8:09 pm
Thanks for sharing about the IH research foundation. I haven’t found much information about intracranial l hypertension out there.
March 26th, 2008 at 6:57 am
I used to have this problem due to a Chiari malformation, and it led to horrible migraines. I had Chiari decompression surgery and it stopped the headaches for a year and a half, until pregnancy brought them back.
March 26th, 2008 at 9:34 pm
spud: postural headache? you had lumbar peridural?
March 29th, 2008 at 2:07 am
I was tested for it. It requires a lumbar puncture to see if the pressure is above normal ranges. Mine was normal. I was actually hoping to find that this was my answer.. and that a monthly spinal tap would free me of migraines by relieving the pressure caused by excess spinal fluid. No such luck.