Thursday, January 14, 2010

Thriving Thursday

I have suffered from headaches since I was a child. I never complained about them to my parents, because I saw what my brother went through, due to his headaches.
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 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'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 find the right combination of medication, to live as normal as possible. And I will continue to fight...and THRIVE with Neurofibromatosis!


  1. Thank You! I have had headaches since a child. These have been attributed to many possible causes, such as eye strain (NF1 causes offset eyes), grinding my teeth, and more. I am glad to know I am not alone in struggling with near constant pain.

  2. Thanks for telling your story. I left my DR. so angry a couple of months ago because she doesn't believe my headaches are that bad. I am looking for a new MD but it good to know someone else understands.