Papilledema is swelling of both optic nerves due to high pressure in your brain, called benign/idiopathic intracranial hypertension, also known as pseudotumor cerebri.

What causes papilledema?

Papilledema can affect anyone but predominantly affects young women with obesity, especially the ones with recent significant weight gain.  Unfortunately, obesity has become endemic in our country, and the prevalence of papilledema has steadily increased over the last few decades and expected to continue to rise over time.  Other, much less common, causes of papilledema include brain tumor, some medications (tetracycline, doxycycline, minocycline, vitamin A derivative anti-acne medicine such as isotretinoin, and hormonal contraceptives), obstructive sleep apnea, systemic lupus erythematosus, chronic kidney disease, venous sinus thrombosis, and lyme disease.

What kind of symptoms would I have?

Most commonly, people with papilledema will experience frequent, if not continuous, and severe headaches, especially in the morning upon awakening.  Due to gravity, the pressure in the brain goes up higher when lying down to sleep.  Some people will experience transient visual obscuration, where their vision will dim out for a few seconds, mostly when they stand up quickly from sitting or lying down.  Some will develop double vision.  Some will hear ringing in their ears corresponding to their heart beat.

What should I expect now I have been told I have papilledema?

Once you are found to have swelling of both optic nerves, you need to go through an imaging study, MRI or CT of your brain, to rule out a brain tumor.  Although it is very important for you to have an imaging study to rule out a brain tumor, most people with papilledema do NOT have a brain tumor.  If you are not a young woman with a weight problem, you may also undergo MRV at the time of MRI to rule out venous sinus thrombosis, which is a blood clot in one of the major veins that drain the blood from your brain.  Once an imaging study rules out a brain tumor, you need to have a lumbar puncture or spinal tap to measure the opening pressure.  This is required to make the diagnosis of benign intracranial hypertension.  Once the elevated opening pressure confirms the diagnosis of benign intracranial hypertension, most likely you will be started on medicine called Diamox or Acetazolamide to reduce the pressure in your brain unless you are allergic to sulfa drugs.  Acetazolamide is a weak diuretic, but it works mostly by decreasing the production of fluid in your brain, called cerebrospinal fluid, not so much by draining the fluid by diuresis.  More importantly, you will be advised to lose weight.  Now, that’s easier said than done.  What I usually recommend is making a very small change in your lifestyle that you can sustain day in and day out.  I do NOT recommend joining a gym and working out 7-10 hours every week and going on a drastic diet.  Anyone can do that for a week or two, but most cannot sustain that kind of change over prolonged time and end up gaining the lost weight right back.  Instead, I recommend eating about 10% less.  Easiest way is to leave 10% of food on your plate.  Consultation with a nutritionist through a referral from your primary care provider will be helpful as well.  I also recommend exercise that is easy to do everyday.  Good example is walking for half an hour everyday whether outside or simulated walk in a stationary spot inside your home when weather is bad or cold.  Medical research has shown losing 6% of your weight will improve your condition.  We live in a microwave era.  We want everything NOW!!  Unfortunately, sustained weight loss does not come that way.  Very small change, sustained and compounded everyday over time, will produce dramatic changes.

Although papilledema results from benign intracranial hypertension, it may not be so benign for your vision.  Statistically, about one third of the patients with papilledema will eventually suffer from some permanent visual loss, usually in the form of visual field defect, where you lose part of your peripheral or side vision.  Therefore, you will need very close monitoring, with frequent office visits with visual field test and optical coherence tomography (OCT) of your optic nerves.  (See chapter 5 for details on these tests.)  Mild loss of peripheral vision may not be noticed by the patient.  Therefore, I cannot emphasize enough how important it is for you to follow up as recommended.  Despite medical treatment and possible weight loss, once you start to develop visual field loss, especially when it is getting worse over time, you will need a more drastic treatment to save your vision from further loss.  In these cases, you will be referred to a neurosurgeon for a shunt procedure, which will divert the fluid from your brain to your abdomen.

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