About IIH

IIH is a very rare condition, and is also known as Pseudotumor Cerebri (PTC) or Benign Intercranial Hypertension (BIH). It affects about 2 people in every 100,000, mostly women, but can also occur in men and children.


This is unclear, but can be often associated with menstrual problems, hormonal problems, and certain medications. These include the oral contraceptive and vitamin A, as well as steroid withdrawal. The condition can be associated with being overweight.


These can be few or many, but will usually include headache, visual disturbances, nausea, problems with balance and memory, tinnitus and neck and back pain. The headaches can be constant, and may ruin sleep patterns. Depression can also be present, and relationships may break down.

Patients with BIH will look 'normal' but it can be a very disabling illness. Support, help and understanding from others is of prime importance to anyone suffering from this disease.


A CT scan, or MRI on the head and brain should be carried out - the result is usually normal, although the ventricles may appear smaller.

Measurement of the cerebrospinal fluid by lumbar puncture which will be raised, but will have normal CSF protein, glucose and cell count.

Examination of the eyes will probably show swelling of the optic nerves (papilloedema) and enlarged blind spots, however recent research shows that the eyes may not be affected.


Weight loss - this may help, but losing weight does not always arrest the condition.

Medication - Acetazolamide (Diamox) is the first choice, but can sometimes produce unwanted side effects. In this case, Frusemide (Lasix) can be tried.

Surgically inserted shunt - may need frequent revision. It can become blocked or can over drain, and is usually only done when all else fails.

Eyesight - frequent testing of the eyes is very important, including examination for papilloedema. As blindness can quickly occur sometimes, surgery may be required. This is called Optic Nerve Fenestration, and involves slits being made in the optic nerve to allow the fluid to drain away.


Prognosis is good for most patients, after treatment. However, a few will suffer with the condition becoming chronic. In this case, long term medication may be sufficient to control the condition. For some people, regular lumber punctures will be required, to both measure the level of CSF, and lower it, through drainage.