April 15 2018
It was fairly minor but I do like reminding people (especially Beetle) that I have a tiny scrap of metal in my head now. It’s been five weeks but so far, Beetle usually gives in to my demands or forgives me for being crabby or losing my train of thought (that has been happening often… and it sucks.)
A few years ago, I went in to have my eyes checked because I was pretty sure I needed glasses. The best way to describe my vision is “lop-sided.” I learned later this was due to an unequal loss of peripheral vision. Reading was getting difficult so I finally went in, hoping/expecting to leave with a prescription for reading glasses. Instead, I left with an appointment to have a CT scan the following morning and a meeting with a neurologist. The drastic rush to get the scan freaked me out but the optometrist was quick to reassure me that she did not think I had a brain tumor. Instead, she thought I had a faux tumor; a condition that resembled a brain tumor but was caused by excess spinal fluid. She called it “pseudotumor cerebri” but that is an out-dated term. It’s now called Idiopathic Intracranial Hypertension (IIH).
The CT scan confirmed the absence of tumors but the lumbar puncture performed by my neurologist indicated my optometrist was right about IIH. I spent the next seven years on and off medication that made me miserable… Diamox, Lasix, and Topamax. My ears rang. My hands, feet, and sometimes my face tingled. “Tingle” sounds fun. This wasn’t fun. It felt like bugs crawling beneath my skin. I hated it.
My hair fell out and my skin became ashy and dry. My mouth became dry and my gums swelled. I even had a tooth pulled. Fatigue set in and I had an overall lack of energy. A short 30 minute walk on the treadmill would put me out for hours. My digestive system got really messed up and I’m at the point now where if I eat something, I don’t know if it will cause me to wake up in pain.
The worst side effect from the medication was feeling stupid. Forgetting words. Not being able to track a simple conversation. Feeling isolated because it takes so much time to process what is being said. My neurologist called it “brain fog.” I like to think of myself as a strong woman but this hurt. (I also cried about my hair falling out… don’t judge me.)
To be continued…