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Headache nearly killed me

On the morning of May 26 this year, Susan Mwanzia woke up with a pounding headache. Everything around her looked blurred and tears were rolling down her cheeks involuntarily.

Her world had changed overnight and she could not understand why she was in so much pain.

She managed to make it to the hospital and though the doctors gave her a high dose of Diclofenac — a strong painkiller — it barely made a difference. Her head was still throbbing and her sight getting poorer by the minute.

“On the doctors’ advice, I did every test but they all came back negative. I did a CT scan, but no tumour showed and it ruled out any suspicion the doctors had,” says Susan.

She was sent home with more painkillers but two days later, on May 28, she drove herself to hospital, collapsing just as she got to its main door. She was admitted immediately to the Aga Khan Hospital and there began her journey with a strange disease that baffled medical practitioners.

“I did more tests; MRI, EEG, ECG and even an ultra-sound. They were all negative. My headache was getting worse. My blood pressure was very low — at 60/35 (normal is 120/80) and I started to think I was dying; that my children would grow up without a mother,” she recalls.


The doctors decided to do one last test; a lumbar puncture to collect a sample of cerebrospinal fluid (CSF). They used the sample to test for meningitis, which turned out negative as well.

“But one thing the doctors noticed was that the cerebrospinal fluid was coming out with a lot of pressure, which is unusual. The pressure of the fluid was 350ml against a normal 120ml. The brain can only accommodate a pressure of 120ml,” she says.

The doctors had discovered that Susan was suffering from Idiopathic Intracranial Hypertension (IIH), a neurological disorder characterised by increased pressure around the brain.

Idiopathic means “of unknown etiology.” This means that no one knows the cause of the pressure.

With this diagnosis, Susan was put on the best-studied medical treatment for intracranial hypertension, an enzyme inhibitor called  acetazolamide (Diamox). It didn’t work. Her only lifeline was surgery.

“I was put under the care of a neurosurgeon Dr Oluoch Olunya, who was away on a business trip. I waited for more than 30 days before I could go for surgery. Meanwhile, the doctors did everything they could to reduce the pressure,” she says.

On July 9, at the crack of dawn, Susan was finally wheeled into the operation room for shunt surgery. The procedure was performed by Dr Olunya and took five and a half hours.

Spinal fluid

It involves creating a drainage path in the body by which the spinal fluid can be drained into another body cavity and then expelled; either as tears, sweat or urine. In Susan’s case, two pieces of equipment, a shunt and a catheter, were fixed in Susan’s spine to drain the excess fluid.

“Four days after the procedure, I walked out of the hospital. Two weeks after being discharged, the headaches began to disappear. I am still on medication, I take 12 different medications in a day, I still go for frequent reviews and the results are encouraging. I am healing,” she says.

The mother of two boys says that her life has changed drastically to adapt to the condition. She is not allowed to drive or sit still for long to avoid pressure build up. She is also not allowed to do strenuous jobs.

Having been to hell and back, Susan maintains a positive attitude and has resolved to create awareness about this little-known condition.