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My (not so typical) story of being diagnosed with Intracranial Hypertension

How I was diagnosed with Intracranial Hypertension

About 6 weeks ago, I was diagnosed with Intracranial Hypertension, which is also known as Pseudotumor Cerebri. My journey to getting diagnosed was fairly atypical, but one I feel I should share.

What is Intracranial Hypertension?

Intracranial Hypertension (IH) is a neurological disorder in which the CSF (cerebrospinal fluid) pressure in your skull is too high. It used to be called “Pseudotumor” because your body reacts as it would if you had a brain tumor. IH is a very rare condition, only affecting about 1/100,000 people. More than 90% of people with IH are overweight, but the connection between the condition and weight is still unknown.

What are common symptoms of IH

Severe headaches, ringing/whooshing in ears, blurred vision, loss of vision, numbness and tingling in the extremities, and vertigo. For more information about IH visit: https://ihrfoundation.org/


How was I diagnosed

From what I’ve read, most people that get diagnosed initially present with worsening vision problems along with severe headaches. They go to an eye doctor to be evaluated and they find that they have swelling of the optic nerve/a condition called Papilledema--which is commonly associated with IH. They are then sent to the hospital to have a spinal tap and MRI to determine their intracranial pressure and whether or not they have a brain tumor.

My story was different. I spend a lot of time researching my symptoms and conditions, and found a strong connection between POTS and CSF leaks. The more I researched, the more convinced I was that I had a spontaneous CSF leak.

There are only a handful of hospitals in the US that diagnose and treat these spontaneous leaks--Duke, Stanford, Mayo Clinic, and a few others. We sent my records to Duke and waited about 5 months to be seen there.

They have to do a spinal tap to perform the CT myelogram when looking for a CSF leak. As I was laying on the procedure table with a very large needle in my back, the PA said, “the pressure is 34.” I asked, “Isn’t that high?,” and he responded, “oh yes, very high!”

A tear rolled down my cheek as I thought…”finally...thank goodness something isn’t normal”. At the time I had no idea how rare the condition was, but I was glad to have something else to attribute my awful sickness to.

After the spinal tap, the doctor came in and said, “you have a damn high pressure”, and continued to explain that I did not have a leak, but I have Intracranial Hypertension. She said that high pressure and low pressure symptoms often overlap and are difficult to differentiate. Here's a photo of me and Dr. Gray, who is absolutely amazing, by the way!

As I did more research I found out that you are 12x more likely to have a BRAIN TUMOR than to have Intracranial Hypertension. Now that’s crazy! On top of that, 90-95% of IH patients are overweight, and I’m not even close to being overweight. I’m one in a million--how about that! And who knows, maybe this condition is underdiagnosed. That’s why I am trying to spread my awareness.

I don’t think any doctor would have suggested I be tested for this condition because according to medical research, I’m an anomaly. I was praying for more answers, and I was led to find this CSF leak video online, which led me to the complete opposite diagnosis. God sure works in funny ways.

I repeatedly tested normal for dozens of medical tests, but I just knew something else was wrong. I kept pushing for answers, and it eventually paid off. Don't give up.

What other conditions do I have?

I also have POTS (Postural Orthostatic Tachycardia Syndrome), Celiac Disease, UARS (Upper Airway Resistence Syndrome), Chronic Active Mono, TMJ, and mild Chiari Malformation.

A few of my doctors have said that they think my high pressure (IH) could possibly be causing my POTS, and others have said there is no way they could be related. We are hoping that some of my POTS symptoms will be helped once we can get my pressure controlled.

I will save my treatment plans/options for another blog post, but I’m excited that John’s Hopkins has accepted me as a patient at their CSF center. They are supposed to be the best in the country for Intracranial Hypertension. I quite sick right now, but blessed to have the opportunity to go and be treated by them.

If you have any questions about Intracranial Hypertension, how I got diagnosed, or anything else, please ask! I’d love to hear your story if you’ve been diagnosed with IH as well.

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