The Vital Signs team spoke with an IIH patient to share her journey and shed light on the challenges of living with the condition.
I never thought much about headaches. Like many people, I would take a painkiller and move on with my day. But in early 2003, something changed. My migraines became more intense, sometimes lasting for days. Then, the double vision started - I would see two of everything, as if my eyes were playing tricks on me.
At first, I brushed it off as stress or fatigue, but as the symptoms worsened, a terrifying thought crept into my mind — what if I had a brain tumor?
The Long Road to Diagnosis
The fear pushed me to seek medical help. My doctor immediately ordered an MRI and a CT scan to rule out any mass in my brain. When both scans came back normal, I felt temporary relief, but the symptoms didn’t go away. My headaches continued, my vision problems persisted, and a new symptom emerged in my ears, especially when I lay down.
It was only after consulting a neurologist and undergoing a lumbar puncture that I finally got the answer: Idiopathic Intracranial Hypertension (IIH).
A Rare and Misunderstood Condition
IIH is a rare neurological disorder, affecting an estimated 1 to 2 people per 100,000 in the general population. Among overweight women of childbearing age, however, the incidence jumps to 19 per 100,000. The condition occurs when cerebrospinal fluid (CSF) builds up in the skull, increasing pressure on the brain and optic nerves, causing symptoms that mimic a brain tumor — hence the term "pseudotumor cerebri."
Despite these statistics, many doctors are unfamiliar with IIH, and patients often struggle for months or even years before receiving the correct diagnosis. In my case, I saw multiple doctors before one considered IIH a possibility.
I was repeatedly told that my headaches were stress-related, that my vision issues were due to eye strain, or that I just needed to lose weight and drink more water. One doctor even suggested that I was experiencing migraines with aura and prescribed migraine medication, which did nothing to relieve my symptoms.
Managing a Chronic Condition
“The management of Idiopathic Intracranial Hypertension (IIH) focuses on reducing intracranial pressure (ICP) and preventing vision loss. The first line of treatment usually includes weight loss, and medications like acetazolamide and topiramate, which help decrease cerebrospinal fluid (CSF) production. If these measures are insufficient, lumbar punctures can provide temporary relief, while diuretics like furosemide are sometimes used alongside acetazolamide. In more severe cases, surgical options such as optic nerve sheath fenestration (ONSF) for vision protection, venous sinus stenting to improve CSF drainage, or CSF diversion procedures (shunts) may be necessary to manage persistent symptoms”, according to Prof Dr Vickneswaran Mathaneswaran, Consultant Neurosurgeon at Subang Jaya Medical Centre.
With a diagnosis in hand, the next step was treatment. My neurologist prescribed acetazolamide; a medication that helps reduce fluid buildup in the brain. The side effects weren’t easy — tingling sensations in my fingers and toes, fatigue, and frequent urination — but they were manageable compared to the fear I had felt before my diagnosis.
“Some patients experience neurological effects like brain fog and mood changes, while rare allergic reactions, including sulfa-drug sensitivity and Stevens-Johnson Syndrome, can occur. Managing these side effects involves adjusting the dosage, maintaining a potassium-rich diet, and staying well-hydrated to reduce the risk of kidney stones,” says Dr. Vickneswaran.
In addition to medication, I was advised to make lifestyle changes, particularly focusing on weight management, as research shows a strong link between IIH and obesity. In Malaysia, where 54.4% of adults are overweight or obese (according to the National Health and Morbidity Survey 2023), IIH may be more common than previously thought — but because of the lack of awareness and research, many cases likely go undiagnosed or misdiagnosed.
The Frustration of Not Being Believed
One of the hardest parts of living with IIH is the lack of understanding — not just from doctors but from friends, family, and even other healthcare providers.
Many assume that if your scans are clear, then nothing is seriously wrong. Some doctors dismiss the symptoms as anxiety or migraines, which can lead patients to feel gaslit and unheard. Others focus only on weight loss as a solution, when in reality, IIH requires a multi-faceted treatment approach.
This lack of awareness extends to the public health system in Malaysia, where neurological conditions like IIH are not widely recognized, and few specialists have experience diagnosing and managing it. Many IIH patients are forced to advocate for themselves, pushing for further tests or referrals to specialists who understand the condition.
“IIH is a serious condition that can lead to lasting problems like vision loss, chronic headaches, memory issues, and even fluid leaks from the brain. Managing it long-term means keeping a healthy weight, taking the right medications, and having regular check-ups. In some cases, surgery may be needed. Catching it early and getting the right treatment can make a big difference in preventing severe complications and improving quality of life, added Dr. Vickneswaran
Raising Awareness About IIH
IIH is rare, but it is real. Many people, like me, go through months or even years of uncertainty before getting the correct diagnosis. While global research on IIH is growing, Malaysia still lacks specific national data on its prevalence making it even harder for patients to get the help they need.
Living with IIH is not easy. Some days are good, but others come with debilitating headaches and vision disturbances. However, with the right treatment and support, it is possible to manage this condition and lead a fulfilling life.
If you are experiencing persistent migraines, vision problems, or other unexplained neurological symptoms, I urge you to trust your body, push for answers, and seek out specialists who are knowledgeable about IIH.
You are not alone in this fight, and your symptoms are not just in your head.
