Yesterday morning I had my follow-up with Dr. Herzog, my new neurologist. Actually we met with Josie, one of his assistants, and she was equally great. We were a little late because of traffic so it took us almost two hours to get there. I have been incredibly nauseated since Sunday and so riding in a car is not fun for me at all.
Speaking of Sunday, it was horrible. We had to take LB home which is bad enough but I woke up with a headache. Well Saturday I woke up with a headache and severe nausea so I took a Zofran and went in to work at the store. The headache never got any better or worse but the nausea let up just a smidge so I could go to my baby cousin Jack’s first birthday party. We got to bed early Saturday night after a rough evening with LB and I didn’t sleep very well, hence the Sunday morning headache. Like an idiot I chose to drive the entire way to Perry, all 4.75 hours of traffic when I knew I needed to pull off but couldn’t find a good on/off exit. Brent wasn’t happy with me.
When we finally got to Perry and when I got out of the car I was swimming. I took LB to use the potty and as soon as I squatted down to help him it felt like I was hit with a hammer. It’s bad when a three year old asks if you’re okay. When we finished I ordered some sweet tea and sat down at the table so we could discuss visitation with LB’s mom. We didn’t wind up leaving until 5:30pm and I could’ve sworn I was dying. I know I can’t die from this but I wasn’t sure that I couldn’t have a seizure – that’s how bad I was hurting. No clue what a seizure is like but that had to be the next step, and I refused to take pain medicine for fear of a rebound headache and besides that shit doesn’t work anyhow. I strongly considered having Brent drive me straight to the ER at Baylor Dallas and begging for a lumbar puncture but felt bad about leaving the dogs longer than necessary (my priorities are too motherly). After some meditated breathing I finally dozed off.
Monday morning was the same scenario, extreme nausea but a slightly less painful headache. I made the drive into work and after walking into the office I became extremely dizzy. This continued on all day until I really got scared at lunchtime, too scared to drive and feeling too weak to even make it to the deli downstairs. So I called Brent and begged him to come get me, and my wonderful husband did just that. Driving would not have been safe for me or anyone at that point. We drove home and I rested on the couch for a bit while he ran an errand and then we took Stormy to the vet for her shots. It was miserable. We went back home and I tried to sleep, incredibly anxious for my appointment the next morning.
Back to yesterday – Josie confirmed what I’d been suspecting since early February. I have pseudotumor cerebri or more correctly known as idiopathic intracranial hypertension. In laymen’s terms my body is fighting a brain tumor that doesn’t actually exist. I have an abundance of spinal fluid that is creating undue pressure on my brain and causing immense pain that medication won’t touch. We were really hoping the relief from the lumbar puncture would’ve lasted longer than it did.
So what’s next for me? Unfortunately I am unable to take the commonly prescribed medication, Diamox, because of the adverse reaction I had to its sister medication, Topamax. Diamox is much stronger than Topamax and it’s just not considered safe for me. That leads me to have another lumbar puncture, a fact which I am very excited about. I can smell the relief already, even if it’s only for a couple of days again. Also, I’ll meet with a neuro-ophthalmologist on March 29th to have my vision tested and make sure my eyes aren’t in trouble. After that I’ll meet back with Dr. Herzog on April 22nd and he will refer me to a neurosurgeon to discuss possible surgery.
Throughout all of this I have been optimistic. I knew what was wrong before the doctor confirmed it so I’ve had time to do a lot of research and come to terms with it. Honestly I feel pretty at peace with the entire thing – I know my options and what the limitations are. It can be a lifelong battle but I will prevail. At this point I will do just about anything for relief. There is an awesome support group on DailyStrength that I have found that have been wonderful, particularly one girl who lives close to me and is about the same age and has been through hell. Her story is very inspiring and she is so strong. While I certainly hope that surgery can be avoided it’s almost a certainty and I’ll just deal with it when it comes.
Love to all,
KC
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