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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8 Responses to “Learning About Intracranial Hypertension (aka Pseudotumor Cerebri)”

  1. wisdom Says:

    Thanks for sharing about the IH research foundation. I haven’t found much information about intracranial l hypertension out there.

  2. Spud Says:

    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.

  3. pht3k Says:

    spud: postural headache? you had lumbar peridural?

  4. Reese Says:

    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.

  5. Susanne McCann Says:

    My daughter has just been diagnosed with intracranial hypertension. When I read the information on the IH Research site, the iformation indicated that the lumbar pressure does not have to be high to have IH. She has had every test in the book..all negative. But the severe pain she is experiencing is not eliminated by the most powerful drugs. Looking to find someone else that shares this problem.

  6. Debbie Filippone Says:

    Dear Susanne,
    My daughter has also been diagnosed with IH after nine months of none test after another coming up negative.
    She has suffered so much with all this. Her first spinal tap was high then the rest normal. I get conflicting theories from doctors. One says she has it, one says she doesn’t, one not sure.
    I can’t tell you how many times she has been in the hospital. They were giving her dilotid which would take the edge off for awhile. She is nauseated everyday, the pressure and pain never goes away. She has no life and was not able to finish her last semester of college.
    She is taking Diamox, amitriptyline, lorazapam for the nausea, neurotin. Waiting for yet another neurologist appt.
    Her veins are shot from all the iv’s. They couldn’t even get a central line in.
    She has dark circles under her eyes. It is really scaring me.
    I hope to hear from you.

  7. Debbie Filippone Says:

    Dear Susanne,
    My daughter is going through the same hell. We are going on almost a year. Took 9 mos. for diagnosis to hear IH and now medicine not helping at all. Pain meds such as dilotid just take the edge off. I thought we were alone in this.
    I would love to be able to talk with you. I am registering her with the IH Research Foundation.
    I hope it’s ok to post my email on this. djfilippone@yahoo.com. I hope to hear from you.

    Regards,
    Debbie Filippone

  8. Jazzmyne Oda Says:

    I was first dx. w/ IH after a kidney transplant (I was only on predinose for 4 days post-op). After months of lasix, diamox was added and it resolved. 3 1/2 years later, it returned with severe headache pain and bilteral papilladema (edema around the optic nerves). This time I could not tolerate the diamox. Had an LP shunt put in oct 08 and headaches plus almost constant ringing with whoosing noise in ears. Neuro thinks its migraines, neuro-opth shows papilla edema back and neuro surgeon does not want to risk surgery again. I feel so lost and confused, the only thing that helps is I know I’m not alone in this!


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