Idiopathic Intracranial Hypertension Support Group Launches in New Zealand

Idiopathic Intracranial New Zealand (IIH NZ)

IIH NZ is a new organisation and website created by research fellow Dr Dan Scott, with the support of Vision Research Foundation. The organisation is a nationwide patient support group and a network for stakeholders in IIH NZ to connect. IIH NZ’s mission is to improve patient quality of life and prevent blindness from idiopathic intracranial hypertension (IIH) through education, public awareness, support and research.

 

IIH NZ aims to support patients, whānau, and health professionals with Idiopathic Intracranial Hypertension in Aotearoa, New Zealand. The IIH NZ website provides information about IIH, patient stories, news and patient resources about lifestyle changes, medications and surgical interventions of IIH. The website also features a forum where patients can ask questions about IIH.

 

What is Idiopathic Intracranial Hypertension (IIH)?

Idiopathic Intracranial Hypertension (IIH) is a rare neurological condition characterised by increased pressure within the skull that affects the brain and optic nerves. “Idiopathic” means  the cause of the condition is not well understood, “intracranial” means within the brain, and “hypertension” means high pressure. IIH is sometimes referred to as benign intracranial hypertension  or Pseudotumor Cerebri, which means “false brain tumour”. The condition is often diagnosed in young, overweight women, but it can affect individuals of any age, sex, or weight.

 

What causes IIH?

The exact cause of IIH is unknown, but it is thought to be related to an imbalance in the production or absorption of cerebrospinal fluid (CSF), which circulates in and around the brain and spinal cord. There are several associations with IIH that exist. The strongest association is being obese, overweight, or recent weight gain. However, not all obese or overweight people develop this condition. Why some people develop IIH and others do not is not well understood. Weight loss alone can achieve remission in the many cases.

 

What are the signs and symptoms of IIH?

The symptoms of IIH can vary but typically include headaches, changes in vision, and tinnitus (ringing in the ears). Headaches associated with IIH are usually severe and located at the back of the head, often worse in the morning, and may be accompanied by nausea and vomiting. Visual changes may include blurry or double vision, loss of peripheral vision, and temporary episodes of blindness. Tinnitus is often described as a persistent ringing or whooshing sound in the ears. Other symptoms may include neck pain, back pain, and balance problems.

 

How is IIH diagnosed?

IIH is diagnosed based on a combination of symptoms, physical examination, and imaging tests such as magnetic resonance imaging (MRI) or computed tomography (CT) scan. Lumbar puncture (spinal tap) is another diagnostic tool that measures the pressure of the CSF in the spine. A diagnosis of IIH is confirmed when there is an elevated CSF pressure, without the presence of a brain tumour or other intracranial pathology.

 

How is IIH Treated?

The treatment for Idiopathic Intracranial Hypertension (IIH) depends on the severity of the condition and the underlying cause. In many cases, IIH can be managed with medications and lifestyle changes. Medications that may be prescribed include diuretics, which can help reduce fluid build-up in the body and brain, and acetazolamide, which can reduce the production of cerebrospinal fluid.

 

In more severe cases, surgery may be necessary. A procedure called optic nerve sheath fenestration can relieve pressure on the optic nerve by creating a small opening in the sheath that surrounds the nerve. Another surgical option is a shunt, which is a small tube that is inserted into the brain to drain excess fluid.

Lifestyle changes can also be helpful in managing IIH. These can include losing weight, as obesity is a risk factor for the condition, and avoiding medications that can increase fluid retention, such as nonsteroidal anti-inflammatory drugs (NSAIDs). It’s important for individuals with IIH to work closely with their healthcare providers to develop a treatment plan that is tailored to their specific needs.

 

To learn more visit the website www.iihnz.com

You can donate to IIH NZ here, select ‘Idiopathic Intracranial Hypertension NZ’  from the drop down list when prompted.