Throughout high school and college, I alternated between wearing my contacts and glasses.

But then life got busy.

But I never imagined the news Id get the next time I stepped into an eye doctors office.

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Picture this: Im at a backyard barbecue at my aunts house in New Jersey.

She had moved just prior to the pandemic, so this was our first time seeing her new home.

Dang, I thought to myself.

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professor of neurosurgery and chief of neuro-interventional surgery at North Shore University Hospital in New York

I really need toget my eyes checked.

I kept my composure until we were out of the office, but then the panic set in.

Thankfully, the blood work and imaging came back clear.

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IIH was once calledpseudotumor cerebribecause its effects mimic those of a brain tumor.

In severe cases, the swelling of the optic nerve can cause vision loss, per the Mayo Clinic.

Although I was diagnosed with IIH at 27, Ive struggled with headaches my whole life.

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Rothstein and Boddu have both said its possible I was dealing with symptoms of IIH long before my diagnosis.

In fact, those doctors are correctthe problemisin the patients heads, it just didnt get diagnosed!

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professor of neurosurgery and chief of neuro-interventional surgery at North Shore University Hospital in New York

IIH is heavily underdiagnosed, he says.

Researchers are also studying how genes and hormones may play a role.

Acetazolamide is a carbonic anhydrase inhibitor believed to reduce the rate of CSF production.

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In 2010, Dr. Patsalides pioneered a minimally invasive surgery for IIH called venous sinus stenting.

It should also be noted thatweight loss is a proven effective treatment for IIH3.

With each doctors visit, Im reminded of the strength I have gained from confronting this condition head-on.

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Ive learned that while IIH presents its challenges, its also manageable with the right treatment and understanding.

What happens next?

Fortunately, IIH is completely treatable, particularly when you have an early diagnosis like I did.

The main barrier to effective treatment is delayed diagnosis, says Dr. Patsalides.

My IIH is currently stable thanks to medication and quarterly monitoring visits with Dr. Rothstein.

But with each doctors visit, Im reminded of the strength I have gained from confronting this condition head-on.

What to do if you think you have IIH

First, take note of your symptoms.

With the lack of education and awareness surrounding IIH,advocating for yourselfis extremely important.

After all, knowledge and early intervention are the keys to living wellespecially with a condition like IIH.

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Hannerz J, Ericson K. The relationship between idiopathic intracranial hypertension and obesity.

2009 Feb;49(2):178-84. doi: 10.1111/j.1526-4610.2008.01240.x.

Subramaniam S, Fletcher WA.

Obesity and Weight Loss in Idiopathic Intracranial Hypertension: A Narrative Review.

2017 Jun;37(2):197-205. doi: 10.1097/WNO.0000000000000448.

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