Symptoms of IH include chronic headaches (most common), blurred vision, vision blackouts, sore eyes, blind spots, chronic fatigue, intolerance to exercise, or dizziness.

As IH is a relatively rare disease, diagnosis sometimes takes a long time. Some people have been told it’s migraine, sinusitis, stress, eye strain or even that it might be imagined. For some people finally getting a diagnosis is a huge relief.

A CT scan is usually the first test ordered. It is a non-invasive test that rules out tumors or other causes within the brain. It might be done in an x-ray clinic or at a hospital.

Whether this test is clear or not, a follow-up MRI is usually ordered next. This is also non-invasive and rules out completely other causes for the headaches or vision changes.

If no other causes can be identified from these scans, then a Lumbar Puncture is usually performed. This measures the pressure of the spinal fluid and is usually the definitive test that confirms the diagnosis of IH.

While the pressure will be high, laboratory tests on the Spinal fluid will be normal.

Note: Some doctors may perform this test to check for meningitis or other viral diseases within the spinal fluid. It is important for them ALSO to check the pressure of the fluid. Without this information, the diagnosis might be missed.

Vision tests are also vitally important. A Field Test should be completed to check for any vision loss and blind spots.

It is also necessary to have an Opthalmologist check for any Papilledema. If left untreated, this will cause PERMANENT VISION LOSS.

Both of these eye tests are painless and simple. They should be performed as soon as possible after diagnosis. Delaying treatment may cause further vision loss.

IH is a serious illness and quick diagnosis leads to better outcomes for patients. Initially I was overwhelmed by my diagnosis, the tests and seeing (Oh my god!!) a neurosurgeon.

I took everything they said as gospel and trusted their judgment implicitly. After all, they were NEUROSUGEONS! Who was I to say anything?

With hindsight I wish I’d had a second opinion, did more research online and was more vocal (demanding/questioning/aggressive) when dealing with the neurosurgery department.

Information is power. You’ve come this far, so get advice from people who have the disease, research online, ask questions and always remember that doctors are just people. Be responsible for your own health.

Computered Axial Tomography (CT or CAT scan)
Magnetic Resonance Imaging (MRI)
Lumbar Puncture (LP)
Field Test
Papilledema

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This page last updated 8/11/2003
Created by Julia S. with most distress!