This particular Thanksgiving week has been a time of reflection for me, because this time last year I was curled up in pain with a never-ending migraine and bizarre facial pain that was set off by the most gentle of touches.
It turned out to be something called trigeminal neuralgia, which has the lovely nickname of “the suicide disease” because the pain can be so excrutiating people sometimes kill themselves to escape the pain — sometimes they go from doctor to doctor looking for a diagnosis and sucumb to the pain before they get a diagnosis and treatment.
I, however, was fortunate. I went to a meeting I was really trying to get out of because of how awful I felt, and when a friend of mine there overhead my symptoms, she told me it sounded exactly like what her cousin had, and voila — through the beauty of the Internet and having the right term to search on — I was able to go into my doctor with what I was sure it was. I had been searching the Internet for days prior to that, trying to find something that accurately described the kind of headache and pain it was — knowing it was far, far different from my “typical” migraine and I hadn’t found anything. (As a friend would say, it was a “God moment” — had I missed the meeting, I would’ve missed out on that friend’s insight!)
My doctor agreed with me that I seemed to have found the right diagnosis and off the neurologist I went. I had the added scare of a “suspicious mass” in my CT scan — discovered the Wed. before Thanksgiving — which fortunately turned out to be nothing — but that “nothing” gave me plenty to worry about for a few weeks until I had an MRI done.
As for the trigeminal neuralgia it was a long journey of pills (at one time — four anticonvulsants a day) and discussions of brain surgery, and those pills made me sick and loopy and really interfered with my life as a mother. At times I lost my ability to select the right words when speaking or writing, sometimes I couldn’t even handwrite because I couldn’t get my hand to coordinate with my mind correctly — I felt brain damaged a lot of the time and it frustrated me. The pain still remained — it was duller, but still there. I felt like an old person in a younger woman’s body. I felt robbed of my life and wondered if this was going to be the best quality of life I was going to face — and if so, was this really the quality of life I could live with. Thank God I have kids — they are who and what kept me going through the worst of it all. I tried to hide my struggles from them — still taking them to everything, still trying to be supermom — but I couldn’t hide the fact that I was exhausted by 4pm and that I cringed everytime they tried to touch my right cheek.
And finally, through a change of doctors and perseverance of the right doctor, we found the right medication — for me, just one high-dose Topamax pill a day does the trick. No more dopiness. Some pain, but not curling up in a ball, hiding from the world pain. I don’t flinch every time my children come up to kiss my cheek.
I have my life back. I am back to being a vibrant mother to my kids, a wife to my husband. Last year I remember having to cede part of the Thanksgiving cooking over to my mother because the pain became so great I could no longer stand, but this Thanksgiving, I cooked up a storm, played Wii, and even had time to run out for some Thanksgiving evening shopping!
The evening news is filled with lots of doom and gloom and of course I’m concerned about our economy and the world around us, but this year I am thrilled to be back to my old self. I have a long list of things to be thankful for — our beautiful family, my husband’s job, our home, but frankly, this year, at the top of the list is being so much better than I was last year. I still have TN, and brain surgery isn’t entirely off the table, but at least I am doing so much better than this time last year.
Happy Thanksgiving, Happy Advent — may you find time to count your own blessings today!