Headaches can be unpleasant and inconvenient. But if you’re experiencing an intense headache along with severe pain in your eyes, you may be dealing with something more serious: recurrent painful ophthalmoplegic neuropathy (RPON). Here’s everything you need to know about this rare condition.

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RPON is a neurological condition that can cause severe headaches and eye-related issues. Scientists are still trying to pinpoint the exact cause, but it def has something to do with the nerves that control your eye function.

Keep in mind that RPON is extremely rare. And according to a 2019 study, about two-thirds of cases are one-time episodes. So (despite its name) it’s even more unusual for RPON to become a recurring issue.

FYI: RPON used to be called ophthalmoplegic migraine. But researchers recently found that it isn’t actually a type of migraine. It was reclassified as RPON in The International Classification of Headache Disorders, 3rd edition in 2018.

RPON symptoms can vary from person to person. Some folks have mild to moderate discomfort that lasts a few days. Others experience more severe symptoms that last for weeks.

Here are some RPON symptoms to look out for:

  • nausea
  • vomiting
  • paralysis or weakness of one of the eye muscles
  • double vision
  • light sensitivity
  • drooping eyelids
  • pain around your eyes
  • headaches that affect one side of your face
  • weak or paralyzed muscles around your eyes

The effects of RPON can be permanent in rare cases. Repeat episodes can cause permanent nerve damage, which might lead to eye misalignments, dilation of pupils, or drooping eyelids.

There’s no one-size-fits-all way to diagnose RPON. A doctor might start by ruling out conditions that can cause similar symptoms. These can include infections, meningitis, sarcoidosis, cancer, or an aneurysm.

After a physical examination, a doc might suggest additional testing, including:

  • Blood tests. A blood sample can be scanned for infections or clots.
  • Angiography. Blood vessels are examined to rule out an aneurysm.
  • A chest X-ray. Your chest is checked for inflammation, which can be a sign of a rare condition called sarcoidosis.
  • Spinal tap. A tiny fluid sample is collected from your spinal canal. This can be tested for infections or cancers like leukemia or lymphoma.
  • Magnetic resonance imaging (MRI). MRIs provide a detailed image of your brain. This can help your doc rule out nerve compression or tumors.

Just remember that RPON is a rare, complex condition. Your primary care physician prob won’t be able to give you a diagnosis. Instead, they’ll probably refer you to a neurologist. These doctors focus on nerve conditions and can help you get to the bottom of things. They can also hook you up with the best treatment options for your needs.

Pro tip: Check with your insurance provider before making an appointment with a neurologist. Exams and visits can be really expensive, so it can help to understand your options.

RPON can be hella painful. (It literally has the word “painful” in its name.) But there are some established ways to get your symptoms to simmer down. Your doc might suggest:

  • intravenous steroids (like prednisone)
  • Botox injections
  • nerve pain medications (like Lyrica)
  • blood pressure meds (like calcium channel blockers or beta-blockers)

It might take some trial and error to find the right treatment plan for your specific symptoms.

There isn’t much conclusive evidence on what leads to this condition, but it may be caused by:

  • nerve compression
  • lack of blood flow to ocular nerves
  • loss of protective fatty tissue around the nerves

FYI: RPON can occur at any age, but studies suggest it’s more common in kids and young adults.

Not really. RPON tends to pop up spontaneously and resolve on its own. But you might be able to reduce your risk by avoiding triggers like stress, alcohol, or certain foods. We need more research to find out whether there are any effective ways to prevent it.

RPON is a painful neurological condition that can cause eye issues and super painful headaches. It used to be called ophthalmoplegic migraine, but research revealed that it’s not actually a type of migraine.

Scientists are still trying to find out the exact cause and cure, but there are lots of treatments that can help you manage symptoms. While there’s no proven way to prevent it, the condition usually resolves itself. But, in rare cases, it can cause permanent damage.

If you have any signs of RPON, your doctor can refer you to a neurologist, a specialist who can help you find the best treatment plan for your unique needs.