Today was the long anticipated neurologist appointment. And by long anticipated, I mean, scheduled in July, been counting down the days and have not gone to an ER for head pain because I knew I had this appointment.
It's mostly my fault. I have a problem where I completely lost my backbone when alone at the doctor (Slappy was on call last night, I told him to go home and sleep) and today was no exception. Generally speaking, I love this neurologist. This is only the second time I've met with her, but she's kind, knowledgeable and seems to care. Slappy has worked with her and all the other doctors speak very highly of her.
I was brought back in a fairly timely manner (almost unheard of) and she asked me why I was there (I currently don't have to do any follow ups for the brain surgery stuff). Apparently the answer of 2 straight months of headaches was not impressive. It's weird because I bitch and moan a lot at home, but at the doctor, I don't know, I feel like a cry baby. I told her about the headaches, the dizziness, the arm/leg twitching and she was wholly unimpressed. She is concerned with the quantity of Aleve and Tylenol I take (imagine how worried she'd be if I told her that I took the two together...) and she has heard of Chiari patients having headaches return 6 months post-op, but really doesn't know why.
I did ask what she thought could be behind the headaches, but she offered no ideas. I didn't push it, because, well, I left my backbone in the car (incidentally, I am like Captain Backbone on the phone, it's a very odd phenomena). So now I'm stuck with a prescription for a drug I really don't want to take.
Yes, some people have great success with this, a lot don't. I'm on the fence about taking it because the most common side effects (as quoted by the neurologist) are tingling hands and fingers (hi, welcome to my life!), drowsiness and forgetfulness. Sure, these are not severe side effects, but they are not ones that work so well in my life. My mom took Topomax for a while and forgot how to get home twice. She lost 10 pounds because she literally forgot to eat.
Beyond my reservation of the side effects, taking this drug doesn't give us any answers as to why after 6 months of less headaches they're back with such force and vigor. This drug is just a patch, a quickish fix. I would rather be in pain that we can figure out than out of pain that we aren't bothering to try to understand. If the Topomax works do I have to stay on it forever? And if it works, what does that mean about these headaches? Does it mean they're related to the chiari or unrelated?
She also gave me a prescription for a different NSAID that will last 24 hours so I don't have to take 3 Aleve a day (plus 8 Tylenol, yes, my kidneys and liver are crying) and get almost no relief. I'll probably give this a shot, knowing full well that it will eat through the lining of my stomach, but you know, in a time released manner.
I was somewhat uplifted when she came back in the room after writing the prescriptions and said that if things aren't better in 6 weeks that they'll do imaging (MRIs) then, but seriously SIX MORE WEEKS. I could absolutely kick myself. Because as frustrating as it is to be in the waiting game, it's is more frustrating to know that it's your fault.
I could've been much more descriptive, I could've told her that it feels like my head is going to explode. I mentioned that some of the headaches are incapacitating and that sleep is the only solution, but apparently that wasn't enough. So now I'm going to take a drug I really don't want to and likely be in the same damn place in 6 weeks, only, you know, with 40 more headaches under my belt.
I'm so glad I put so much stock into this appointment and got my hopes up for some answers.
I swear it is like I will never learn.