Brenda Bonds, a Mayo Clinic patient from Wisconsin, shared this story recently via email. To share your story, click here for options.
Pain is a fascinating phenomenon. The stronger it gets, the more it steals your life away. And I was clinging to mine. But four years earlier, a few random pains were only a minor annoyance.
Then six months later I was diagnosed with a pituitary tumor. Meanwhile, those strange pain attacks on one side of my head began to make my eye water. They would start with pressure that built to a peak of pain, and then faded away. Over the next three years I saw my primary doctor, an endocrinologist, an allergist, an ENT, a neurosurgeon and a neurologist about themâ€”but no one had a clue and so they continued.
Then this spring I began having more attacks that were growing in severity. I took naps in my car over lunch just to get through the day. I was tired all the time and eventually needed to take a medical leave from work. It seemed like everything in life triggered an attackâ€”walking, bending, showeringâ€”even light, sounds and smells. I became isolated in my home and thought I was eventually going to die from this.
One day I became so desperate for just a moment of relief that I sliced the top of my arm with a knife. The cuts hurt just enough to distract me from my head pains, and then the endorphins kicked in. It was like a two-hour vacation from hell.
By now it had been four years and still no one was medically helping me. My primary doctor wanted me to see a pain psychologist to help me â€ścope.â€ť Some of the attacks were up to a level 10â€”the worst a human being can feel. I was fighting to stay off the edge of insanityâ€”and there was no way to â€ścopeâ€ť myself away from it.
After endless arguing with my HMO and finally using my own savings, I went to the Mayo Clinic in Rochester. There I met my heroâ€”a neurologist named Dr. Ivan Garza. He listened to me, considered all possibilities, and said he wouldnâ€™t give up until I was well. He solved my mystery, and though my recovery wasnâ€™t overnight, I eventually did get my life back like he promised.
It turned out that my condition is very rare. Itâ€™s called SUNA (short-lasting unilateral neuralgiform headache attacks with cranial autonomic features) and difficult to diagnose because thereâ€™s no test. But it is sometimes related to pituitary tumors. If you have pain attacks on one side of your head that builds to a peak and fades quickly, making your eye tearâ€”please talk to your doctor. And if he or she doesnâ€™t listen, find someone who will. Heâ€™s out there.
What an amazing story to read, even though, it's now 7 years later
I'm going through a big "mess" right now, and although I live where the big hospitals are, right here, near Boston, I have yet to find the "right one" for "all of my problems" just yet. I have found one I love, but still working on many more.
My PCP is AWFUL lately, yet used to be so good.
I think they're outgrown their practice, and have become too big, and quite frankly, I hate it.