Do you suffer from constant headaches accompanied by problems with your sight?
These could be symptoms of Idiopathic intracranial hypertension (IIH), a disorder that results from increased pressure around the brain.
Although anyone can contract IIH, it is most prevalent in women between the ages of 20 and 50.
Symptoms of IIH can appear similar to those patients with a brain tumour. Although patients do not have a tumor, the term pseudotumor (false tumor) cerebri (within the brain) has been used interchangeably with IIH.
It is important to consult a healthcare specialist for diagnosis of idiopathic intracranial hypertension. Potential treatment may be required as some patients may risk progressive loss of vision if left untreated.
Idiopathic intracranial hypertension is sometimes referred to as pseudotumor cerebri (false tumor of the brain) syndrome because its symptoms mimic those of a brain tumour – which was especially true before the advent of brain scans. IIH is a disorder of the nervous system that is associated with an increase in intracranial pressure.
Raised intracranial pressure occurs when the liquid that cushions your brain, cerebrospinal fluid (CSF), starts to build up in your brain. This is partially due to the brain’s inability to remove accumulated CSF into the bloodstream. This build-up of CSF causes raised pressure on the brain and optic nerve leading to the potential for permanent vision loss.
There is no defined cause for IIH but women of childbearing age who are overweight have been found to be at higher risk for IIH suggesting that reproductive hormones, such as testosterone and estrogen may have a large part to play.
When symptoms of IIH manifest, it is important to seek help from a neurologist to avoid complications.
Some of the most common symptoms of IIH include:
- Persistent headache (80-90% of patients suffer from headache)
- Many patients also suffer from overlapping migraine
- Pulsatile tinnitus (whooshing sound in either ear that is in time with your pulse)
- Nausea and vomiting
- Shoulder and neck pain.
- Temporary loss of vision especially when straining, coughing or passing a bowel motion
- Double vision
Females are 8x more likely than males to develop this condition. IIH is an uncommon disorder but cases have been found to be increasing with an increase in the rate of obesity especially in the US, Australia and other developed nations.
Studies have also found that women with a high BMI or those that are overweight are more likely to suffer from IIH, in one American study, obese females were 19x more likely to have the disorder compared to males.
If you have symptoms of IIH, it is important to ensure that you
are properly diagnosed so that you can start getting treatment.
There are various tests that are done to diagnose idiopathic intracranial hypertension including:
- Visual field test to check for blind spots
- Eye photography to check for swelling of the optic nerve caused by raised intracranial pressure
- Optic coherence tomography to quantify the degree of swelling caused by raised pressure. A baseline is useful prior to treatment as a means of tracking progress after treatment has been instituted.
- Magnetic Resonance Imaging (MRI) with MR venography
- Lumbar puncture to check for elevated levels of CSF pressure in the spinal fluid space
Once you are diagnosed with IIH, the healthcare specialist will recommend a
treatment plan based on your condition. Treatment options may include:
- Medications: Your doctor may prescribe medication to reduce the amount of CSF your body produces and help improve IIH symptoms. The doctor may also prescribe a diuretic such as Acetazolamide.
- Weight loss: Weight loss can be effective in treating IIH. Depending on your BMI, the IIH specialist may recommend losing 5% to 10% of your weight. However, in many instances this may not be possible in such a short time frame and medication may be required in conjunction with weight loss strategies.
- Stenting: Depending on the severity (or the presence of swelling eye), stenting may be required to treat IIH. A venous stent may be implanted in the brain to decompress veins which have been compressed by high pressure cerebrospinal fluid. Doing so reduces pressure enough to treat papilloedema in more than 90% of patients.
The consultation cost will vary depending on the service enquired, appointment duration, medicare availability and other factors. Please use this calculator to get an estimate of your cost on the day of your consultation.
Our team of healthcare specialists consists of Sydney neurologists who have exclusive access to some of the best diagnostic testing in Sydney. We also have two out of a handful of interventional neurologists that exist in Australia in Dr Winters and Dr Ang so you can rest assured that your treatment will be in the hands of some of the best neurologists in the country.
Both doctors are experienced members of the RPAH neurointerventional service and can arrange for highly specialised IIH testing and treatment at RPA if your condition is severe enough to require it.
If you suffer from frequent severe headaches and problems with vision, it is important to consult a specialist to rule out IIH. These answers to frequently asked questions about idiopathic intracranial hypertension can help you understand the condition better.
In some cases, symptoms of intracranial hypertension may go away on its own especially if the condition is mild but may recur after a while. It is best to consult an idiopathic intracranial hypertension specialist as some aspects of the condition left untreated can result in permanent harm to your vision.
Yes, it is possible to be cured IIH , the condition itself – this is mainly achieved with significant weight loss if being overweight is likely to have contributed to your IIH. There are many patients who are not overweight and can still suffer from the condition too.
Most treatments do not ‘cure’ the disease per se. Many of the treatments that are available either reduce symptoms or prevent permanent vision loss.
IIH itself is rarely life threatening. However, in rare instances patients may be unaware of severe and permanent vision loss and this is only discovered at diagnosis or by visiting an optometrist. Nevertheless, our IIH specialists are able to determine if disease severity requires urgent surgery or stenting.