Want to dive even deeper? Check out our

Most Common Signs and Symptoms of IIH

Ranging from mild to severe, signs and symptoms of IIH can turn into debilitating complications if left untreated.

The signs and symptoms of Idiopathic Intracranial Hypertension (IIH) can range from mild to severe. If left untreated, these findings can turn into permanent and debilitating complications.

The diagnosis of IIH is defined by the modified Dandy criteria. The most reported symptoms of those diagnosed with IIH are: headaches, dizziness, nausea, vision loss, double vision₁ and pulsatile tinnitus.₂ The clinical signs associated with IIH are: elevated opening pressure with a lumbar puncture, specific MRI findings, sixth nerve palsy, papilledema, and radicular pain.₃

Here is a review of the most common signs and symptoms of IIH.

Headache

The most reported symptom associated with IIH is a headache. When pressure in the brain is increased, shifting of these anatomical structures will cause head pain. It can present in any form, can wax and wane, can be described as a tension-type or migraine-type, and can worsen with coughing or straining. A headache is experienced in 68-98% of patients with IIH.₁

Visual Disturbances 

A build up of pressure in the cranium will decrease the amount of space in the brain, compressing the eye and its neurovascular structures. With IIH, vision is usually first to be compromised with increased intracranial pressure causing a wide range of visual changes:

  • Transient obscurations are when a person sees black spots, shadows or dark patches in one or both eyes that can occur over seconds or minutes. These visual disturbances are reported in 52-72% of patients with IIH.₁
  • Blurry vision or double vision. This can occur slowly over a course of weeks or months.
  • Visual field deficits can go unnoticed and are usually only appreciated during a comprehensive eye exam. Your visual field is the objects seen around the area of your central focus area.
  • Vision Loss can occur over hours, days, or weeks. If vision loss occurs rapidly, fulminant IIH is considered. This finding requires emergency medical attention to prevent permanent total vision loss.
  • Papilledema is a finding seen on fundoscopic examination of the eye. Papilledema occurs when there is increased pressure in the brain causing swelling to the optic disc and nerve. The optic nerve is what carries visual signals from the eye to the brain. Unfortunately, if this swelling is left untreated, it can lead to blindness.

Pulsatile Tinnitus

Is defined by the sensation of ringing, swooshing or pulsation in the ears and is reported in up to 60% of patients with IIH.₁ Also known as synchronous pulsatile tinnitus, the frequency and strength of these symptoms can be mild or debilitating, requiring high-dose prescription medications. Pulsatile tinnitus is commonly associated with venous sinus stenosis. Recent data has shown venous sinus stenting  to effectively resolve pulsatile tinnitus if it is due to to narrowing of the dural venous sinuses.₄

Radicular pain

It is hypothesized that radicular pain is the effect of increased cerebrospinal fluid pressure, compressing nerves in the arms and legs causing the sensation of pins and needles.

Sixth Nerve Palsy

This is the weakening of the lateral rectus muscle of the eye (innervated by the sixth cranial nerve) and can lead to double vision. Also known as abducens nerve palsy, it is a disorder that affects the ability to turn your eye away from your nose. With weakness of the lateral rectus muscle, your eye remains crossed inwards towards your nose.

There are also a constellation of symptoms not listed above that affects one with IIH such as fatigue, migraines, neck and shoulder pain, brain fog and much more. As IIH continues to be better understood through research, it will lead us to better diagnostic tools and treatment options. If you would like to learn more about the treatment for IIH, click here.

  1. Ball A, Clarke C. Idiopathic intracranial hypertension. The Lancet Neurology. May 2006;5(5):433-442.
  2. Thurtell M, Bruce B, Newman N, et al. An Update on Idiopathic Intracranial Hypertension. Rev Neurol Dis. 2010;7(0):e56-e68. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC367448/)
  3. Friedman D, Liu G, Digre K. Revised diagnostic criteria for the pseudotumor cerebri syndrome in adults and children. Neurology. August 21, 2013;81(13):1159-1165.
  4. Patsalides A, Santillan A, Sundararajan SH, Michael M, Suurna M, Alexiades G. Venous sinus stenting for the treatment of isolated pulsatile tinnitus: Results of a prospective trial. Interventional Neuroradiology. 2021;27(2):266-274. doi:10.1177/1591019920974185

Related articles

April 25, 2024
IIH Patient Nicole Rodriguez shares her valuable insights on navigating through the US healthcare system while living with a rare condition...
women with a laptop writing a note
February 22, 2024
Take part in our next IIH Community Chat Session as we discuss what it is like to navigate through the healthcare system...

You are not alone

This hub is filled with resources to help you navigate IIH. Sign up for our mailing list to receive monthly updates about new tools and resources.

Patient stories

“I know everyone says to trust your gut, so I’ll say trust your headache. Your pain is real, and ‘borderline-ish’ does not serve anyone.”
“Knowing your diagnosis and following the latest science and research is crucial in a world where you will encounter medical professionals who have never seen an IIH case.”

Like what you are seeing?

Join our next webinar.

Thank you! You’re registration is complete for:

IIH Practitioner Series

Join our June webinar to discuss GLP1’s and its impact on patients with obesity.

June 24 at 9:30 am ET