Pseudotumor Cerebri

What is Pseudotumor Cerebri vs. Pseudotumor Cerebri Syndrome?

According to Healthline.com, the definition of Pseudotumor Cerebri “is a condition in which the pressure around your brain increases, causing headaches and vision problems. The name means “false brain tumor” because its symptoms are similar to those caused by brain tumors. It’s also known as idiopathic intracranial hypertension. This condition is treatable, but it can return in some cases”.

Pseudotumor Cerebri Syndrome according to the video, has started a trial for people meeting certain criteria that meets the "syndrome" definition. However, if you have ever been diagnosed with Pseudotumor Cerebri and according to six Neurologists and two Neurosurgeons, once you have been diagnosed with Pseudotumor Cerebri it doesn't go away. All that can be done is slowing it down or potentially divert fluid from the brain to be re-absorbed naturally somewhere else in your body. Increased fluid and pressure in the brain put pressure on the optic nerve causing damage. Unfortunately, the damage can become permanent if not treated. 

Pseudotumor Cerebri
I found out a few years ago that I have this disease. This disease occurs 1, out of 100,000 people. 


My Story of Pseudotumor Cerebri or IIH

In 2009, I became a commercial truck driver and started to drive over the road. On and off for the last few years, I had experienced headaches, vision loss, double vision, and balance issues. Never did I think I had a serious medical problem. Any time, any one of these symptoms occurred and went to the doctor’s office or the Emergency Room I was told that I was dehydrated. No MRI’s or CT’s had been done.

In 2013, I had gotten married and put on a tremendous amount of weight. Throughout the course of my truck driving career, I was experiencing more eye-sight, balance, and headache problems that no doctors could explain. My eyesight started to become so poor at times, I would go blind and get an enormous migraine. My husband’s family thought I was being lazy, inconsiderate, and “childish”.

A year later in 2014, I was diagnosed with Pseudotumor Cerebri. I was prescribed Diamox, Topamax, and rizatriptan to help fight the symptoms. 

I had my first spinal in 2014. My eye-sight had improved for only two short weeks. Then, yet again I started to have more problems with my sight, balance, and headaches that just wouldn’t go away. I was never educated on how serious Pseudotumor Cerebri really was. I had experienced several more instances that involved my vision being lost and started to become more irritable and frustrated. I had six more lumbar punctures in 2014 alone.

In 2015, my mother needed to have major surgery and asked for me to be by her side. I flew down to Florida to be with her and bringing my sewing projects with me so I could show her some of my work. Then, I received a call that ended my marriage, losing everything I owned from my childhood belongings and more.

Over the course of the year, I had been in and out of the Emergency Room for my vision loss and nearly wrecking the car. Several more spinal taps had been administrated over the course of the year and not one doctor made the suggestion of another alternative solution to me.

In 2016, I started to become proactive in my health and weight. I lost nearly 90lbs, yet, I was still having problems. I had seen an ophthalmologist and neurologist who had told me that I had a permanent vision and memory loss. Throughout the course of the year, I continued with the usual spinal taps and medications. I found a contractor job that allowed me to work and go home when I needed to. However, I wasn’t able to work the usual 40 hours a week. Unfortunately, I was working maybe 15-20 hours a week.

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