I never wanted to end up with Neurofibromatosis, and in some way, denying it, made me feel better. Hiding from the NF was all I could do, to help make things better for my mother.
When I was at the NIH, for m surgery, I was visited by a pain specialist to talk about my constant headaches. (what triggers them, what makes them worse, and what kinds of meds make them better)
I have not found anything that takes my headaches away completely, in fact even with the strong migraine medication, I find little, to no relief.
I take Topomax at night before I go to bed....and I have really not noticed any change in my headaches, but something suggested by the pain specialist I just tried this week. The Dr. suggested that I keep a headache journal...I have never done this, but she told me that it could help figure out what is triggering the headaches. Or possibly find times of the day, where I need to try to stop stress before it happens (hahaha)
So Monday and Tuesday, I really wanted to find out if the Topomax was helping me, so I stopped taking my 50mgs, and wrote down every pressure and every pain I felt.....Wednesday night, I took the Topomax and did find a distinct difference....Today, I didn't wake up with a headache, like I did Tuesday and Wednesday morning.
Keeping a Headache journal has helped me--so far to figure out that my meds DO HELP, but also I have found that late in the afternoons are when my headaches are at their worst...so finding ways to lift some of the stress, is something I am working on.
Sometimes pain is a mystery. Sometimes, the answers are hard to find...and sometimes it's up to YOU to find the best way to help alleviate your symptoms. Medicine is not perfect....it's not a "cure all" answer...And I have found, that sometimes it is necessary.
I may have these headaches for the rest of my life, so it's important I learn to manage them. My Neurosurgeon does not think a shunt, for treating my Normal Pressure Hydrocephalus is necessary...but she also has not given me much hope for treatment for the pain I am in.
So I am on a quest to find the answer....to find the right combination of medication, to live as normal as possible. And I will continue to fight...and THRIVE with Neurofibromatosis!