Blog, IIH

The reality of life with Intracranial Hypertension

The reality of life with Intracranial Hypertension

What is Intracranial Hypertension?

Intracranial Hypertension (IH) is a rare neurological disorder that results in increased cerebrospinal fluid pressure within the skull.

Doctors used to call it “Pseudotumor Cerebri” (aka fake tumor), because those with brain tumors also have elevated intracranial pressure—causing the same symptoms and presentation.

Life with IH varies greatly from patient to patient, but is a serious condition that can greatly impact quality of life. Having severe headaches, nausea, vertigo, loud ringing in your ears, and even vision loss every single day sounds like a nightmare. But it’s reality for those with Intracranial Hypertension.

Not every patient experiences all of these symptoms, but they are all very typical with IH. Some have “good days” and others do not. Many patients are unable to work or go to school because of their health. To put it bluntly—this condition is difficult to live with.

Just because you see us smiling, laughing, or out doing something doesn’t always mean we’re feeling better—it means we’re trying to enjoy our lives despite our illness.

Treatment options are unfortunately not great. Medication to treat IH is very harsh on the body (particularly your kidneys) and has many undesirable side effects. Those that don’t respond to medication often resort to brain shunt or stent surgeries. There is no cure or “quick fix” for IH and it’s accompanying symptoms.

What patients say about life with Intracranial Hypertension

I asked others with Intracranial Hypertension to try to describe life with the condition in one sentence.

Here are some of the answers I received:

"I never thought I’d wake up sick and never get better” -Carrie

“If a healthy person suddenly felt what I feel on a regular basis, they would go the hospital” -K

"It's like being stalked by a bear, even on good days you know it is there waiting to take you down" -Stacey

“Completely life altering” -Kristen

"It's like someone beating you in the head with a baseball bat and u have no control." - Janet

"I don’t know what’s worse; the constant migraine and blurry vision, the spinal taps, or the fear of having to deal with this for the rest of my life." -Abby

"Just because I could yesterday, doesn’t mean I can today, but just because I can’t today, doesn’t mean I won’t be able to tomorrow." -Michelle

"Living with IIH means constant trial and errors with medications because they don’t actually make one for this condition" -Dani

"Its frustrating and scary to have no clear way to know what the future holds" -Kelly

"Feeling as if my brain is being squeezed in my skull. Blinding pain." -Noelle

"As an IH parent, I feel completely helpless because there is nothing I can do to make it better for my daughter" -Becca

"This disease is a thief.. it steal us from our families, from our work & from our social lives.. it does not discriminate, it can attack anyone at any time.. It’s cruel.." -Tiffany

"A roller coaster that I want to get off of!" -Denise

Thank you to all who shared a small piece of their journey with IH for this article. I hope it conveys how life-altering this illness can be. Happy Intracranial Hypertension awareness month :) We will continue to hope and pray for a cure!

Please leave your thoughts and comments below.

*I thought I would share this intracranial hypertension awareness bracelet I have on my new Etsy shop. They are handmade by me, and a portion of the proceeds is donated to the Ehlers-Danlos Society. You can find them here!


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