Pseudotumor Cerebrai/ Intercrainial Hypertension
Pseudotumor literally means " false tumor " meaning that my brain thinks that I have a brain tumor. However, there is not one there. My body compensates by making too much cerebral spinal fluid (CSF). This excess fluid puts pressure on the optic nerves and causes swelling and if left untreated, subsequent blindness. A product of the increased fluid is a severe pressure headache that is constant. Mine fluctuate in intensity throughout the day and can be heard in my ears with a weird whooshing sound. This disease is thought to effect overweight women in their childbearing years. They say that with weight loss your symptoms will improve. However, I am writing to you a solid 50 pounds lighter than I was at the onset of my symptoms and am actually having worsening headaches as opposed to improvement.
In order to keep blindness and disabling headaches at bay, medications such as diruetics and anti-seizure medications are required. Then, you need meds to keep the side effects of those meds at bay- potassium, vitamins, etc.
Some of the meds have unpleasant side effects, such as tingling in the hands and feet, changes in tastes of foods( esp cokes or carbonated beverages), trouble thinking (this is a big one for me), and memory loss.
It's a never ending cycle. Depressing at times. That being said, some people have it a lot worse than I do. I've learned to take each day as it comes.
Some days are good and some days are bad. I just have to go with the flow. Sometimes I can go for weeks at a time and keep the headaches under control, other times, not so much.
I posted this for two reasons.
1. To let others know that there are others out here who struggle too. I just wanted to let you know that I too have this and I am here for you.
2. For my friends and family members who do not understand what this is and how it affects me. This is what it is and what it does.
