Papilledema & Intracranial Hypertension

 *Note: I am not a medical professional. All information provided is from personal experience and personal research. If you are experiencing a medical condition, please seek a medical professional first and foremost. (Read Full Disclaimer Here)

What is Papilledema?

Papilledema is a visual condition where there is swelling of the optic nerve(s). While Papilledema can be secondary to a few conditions (brain tumor, brain hemorrhage, etc), I will be primarily speaking of it in relation to Intracranial Hypertension.

When spinal fluid levels increase outside of a normal range (Intracranial Hypertension), it can apply a significant amount of pressure to all surrounding areas. This includes the optic nerves of the eyes, which is the nerve that connects the eye to the brain. The intracranial pressure upon these nerves may cause them to swell, called Papilledema.

Symptoms of Papilledema

Symptoms of Papilledema vary but most commonly include visual changes such as:

• Blurred vision
• Double vision
• Loss of vision (full or partial)
• Distorted vision (example: straight lines bend and curve)
• Visual blackouts (similar to when you get up too fast, yet happening at random and lasting much longer)
• Visual Auras (zigzags, flashes, spots, etc)

Papilledema can exist in one or both eyes. One eye may also be affected differently or worse than the other.

Being this is a condition that is secondary to another (Intracranial Hypertension) you may also experience a surge in symptoms from the causing condition, such as eye pain, headaches, dizziness, nausea, etc.

Papilledema can lead to permanent blindness. However, it is important to note that though vision may be lost from Papilledema, many find that their vision eventually comes back after treatment as the swelling of the nerves goes back down.

The optic nerve may also sustain permanent damage, yet your vision may not become impaired. Because this condition can go in any direction, it is so important to maintain regular eye exams and follow the treatment plan that you and your doctor agree on.

How is Papilledema diagnosed?

Diagnosis is usually made by an optometrist or ophthalmologist. The tending physician may run a series of visual tests as well as take a thorough look in your eyes. Typically, swelling can be seen quite quickly and fairly easily.

Your Papilledema may be graded on a scale of zero to five based off of severity, with “zero” being normal and “five” being severe.

Read below about what to expect at your first eye appointment.

How is Papilledema treated?

Papilledema is most often treated by addressing the root cause. In the case of Intracranial Hypertension, this may mean being placed on medication such as Diamox to reduce intracranial pressure or having a spinal tap to drain the excess fluid causing the pressure. Other times, where vision is at risk or if other treatment has failed, more invasive measures such as shunt surgery or optic nerve sheath fenestration may be suggested. Some may find an improvement of symptoms through weight loss or dietary changes. You can read about various treatment options for IH here: natural remedies, medication, and surgical.

The severity of your case and the effectiveness of your treatment will determine the time frame of resolution. It may take weeks or months for Papilledema to fully resolve.

What to Expect at Your First Appointment

I would expect most doctors and patients follow a similar route when it comes to an eye appointment, so the following will be my own personal experience on how things usually go:

When I first arrive to my appointment, I am usually taken to a very small, dark room where a “Visual Fields Test” is performed. I sit in front of the visual fields machine, and a nurse places a patch over one of my eyes. I am handed a little “clicker” remote, and I rest my chin on the machine. I am advised to stare at the dot on the screen while the machine captures a focused image of my eye. Then the game begins where I stare at a center black dot while small lights flash all around it. It is my job to click when I see them, without ever taking my focus off of the center dot. This may last a couple of minutes depending on how many dots I catch. Then we alternate the patch to the next eye and start the process over. I typically don’t wear makeup to these appointments due to the adhesive on the patch (which they should ask if you’re allergic to in advance).

You may also undergo a couple of other tests, such as an eye scan or retinal test, where you place your chin on a small machine and allow it to take thorough images of the inside and back of your eyes.

After this, you may sit in your doctor’s office while they perform a physical inspection of your eyes. This may involve them shining a light in your eyes or you following/counting their fingers with your eyes to see your response. They may look into your eyes with a slit lamp lens (a small ring shaped microscope) or ask you to read a chart through an “occluder” (a pin-holed device that partially blocks your vision).

Be prepared that your eyes may be dilated at this appointment. This usually begins with some numbing drops (these might sting slightly) followed by the dilation drops (another reason I don’t wear makeup here as your eyes may water quite a bit). You may sit in a dim room for about 15 minutes (doctor’s time) while the drops take effect. Then the doctor will come back for a closer look. Be sure to bring sunglasses, though they often have a fun pair you can wear.

The doctor usually reviews the results of all of the tests at that same appointment. A treatment plan may be discussed or sent to your primary treating physician for their input.

These appointments should occur regularly. They are often several times a year if an issue is discovered but should be no less than every 6-12 months unless your doctor determines otherwise.

Always Keep an “Eye” on Your Health!

Believe it or not, many people first discover they have Intracranial Hypertension during a routine eye exam. Headaches may never even come into play. In fact, from my personal experience, optometrists and ophthalmologists are some of the most knowledgeable physicians there are on this condition. For those with Intracranial Hypertension, it may be beneficial for your treatment to have a neuro-ophthalmologist on your team.

It is so important for even the healthiest of people to maintain regular eye exams, but this is especially true for those living with Intracranial Hypertension. Always be sure to keep an “eye” on your health!