Sitting at my desk at work, I felt like my skull was smashing my brain. I could hear the cars 50 yards away going down the highway. I could hear the bugs outside the front door chirping. I could hear the conversations of co-workers that weren’t even within hearing distance.I know it sounds crazy. Has your head ever hurt so bad that you thought, if someone would hit me in the head it would feel better? Mine has.
My neck hurt to move. I felt like someone was inside my head trying to force my eyeballs out. My teeth hurt, my spine felt like it was being squeezed. I decided to leave work and drive myself to the doctor. From there they sent me to the hospital where they did a spinal tap to test for Meningitis. It was negative. What the test did show was the pressure around my brain was at 39. The ideal pressure around your brain is between 10-20. They drained the fluid to lower the pressure. From there I was released to go home, lay flat for at least 24 hours. I laid flat for 48 hours, and returned to work the following day.
I remember returning to work and within an hour going to my bosses office and laying in her floor crying for someone to make it stop. I don’t know what I would have done without my dad that day. He took me to his house, and I laid in bed until my mom got home. She took me immediately to the doctor to find out I was leaking spinal fluid. From there they drew blood from my arm and inserted the blood into where they did the spinal tap to help it heal. This hurt more than the spinal tap. I could feel the pressure of the blood going into my spine. Once again, I was to lay down flat for 24-48 hours. Little did I know, this was just the beginning.
After the Blood Patch procedure, life felt good. I was back to normal. So I thought. Four months passed, and the same thing started to happen, just not as severe. I thought it was maybe just my glasses, so I made and eye appointment. That is when things got scary. I was told my optic nerves were very swollen, and something was pushing my eyes forward. When I asked what the cause was, the response was tumor. I immediately panicked and called my mom. I mean who else do you call in these situations, right? From there I was referred to a specialist. the specialist confirmed what the doctor saw, and scheduled an MRI and another Spinal Tap. The MRI came back fine, but my spinal pressure was through the roof again. From there I was referred to a Neurologist.
The Neurologist once again confirmed. I was diagnosed with Pseudotumor Cerebri, also known as Intracranial Hypertension. I was then put on a medication to drain the fluid which reduced the pressure. While on this medication I was told having kids was not an option ever unless I had a shunt placed. The medication was known to cause extreme birth defects. If I were to come off the medication to have a baby, the pressure would build back up and would cause delivery to be dangerous with multiple factors of stroke, hemorrhage, or worse. I remember crying in that office with my mom that day. For 2 years I struggled finding the right dose of medication ending up with spinal tap after spinal tap, blood patch after blood patch. My family was always by my side. The first year was the roughest. I enjoyed nothing in life. I was sad. I was depressed. I didn’t want to get out of bed. I hurt. The light, temperature change, noise, smells, tastes, even just my pillow made my head hurt. My poor husband couldn’t do anything for me, all he could do was listen to me lay in bed in the dark and cry. Taking me to the ER did nothing. They wouldn’t touch me without my neurologists approval.
After 2 years my doctor decided that medication wasn’t working and referred me out to a Neurosurgeon. My husband, mom, and dad all accompanied me. I remember the neurosurgeon telling me I hadn’t had enough spinal taps for a shunt, that medication could still help. I remember feeling so frustrated and mad that I couldn’t even talk. I just cried. My mom had to speak for me. I felt helpless, lost, and broken. For 2 years I had been trying medication that didn’t work. It made me sick, and I continued to hurt. I didn’t understand why they wouldn’t just put a shunt in and let me go. Thankfully he didn’t think it was time. I had lost 50lbs and my head still hurt daily. I wasn’t myself. I didn’t even recognize who I was. I had lost my happiness and positivity, my light, the thing that makes me who I am. So, he referred me to a neurologist where he was located. Within 3 visits she had me on the same medication but the dose I needed. I was able to follow up with my Neurologist and Eye Specialist and continue most normal life events after this with the exception of a few things I found out I could no longer do. I found things within my diet to help reduce the fluid. I can no longer participate in water slides, roller coasters, heights, and I now despise winter.
A year of less pain passed, and I was able to enjoy the little things with my family again. I made job changes to relieve stress, and we later found out we were expecting a bundle of joy!
But that is a whole different story.. kind of.
Life struggles 