Q. I have suffered with “The Monster” for more than 20 years. That’s what I call my headaches. It took 5 years and trips to 5 different teaching hospitals to get a decent diagnosis. These are the most excruciating pains you can get, like a red-hot poker in your eye socket.
For most of the years, I’d inject Imitrex and the pain would leave eventually. Imitrex is a drug I’d rather not take unless there is no other choice.
One day it caught up with me. I’d had seven attacks that day and I called my doctor and said unless I could get help, today would be my last. I sent the same message to the Headache Clinic in Jefferson Hospital in Philadelphia. They apparently took me seriously. The next day I had an appointment with Dr. Stephen Silberstein, the chief headache guru.
I was diagnosed with cluster headaches and prescribed verapamil for prevention and oxygen with a re-breather mask for treatment.
Amazingly, the first time I used the oxygen the headache was gone in several minutes. It was the first real relief I had gotten in years. That was 10 years ago. What I almost killed myself over has now become nothing more than a nuisance that occasionally wakes me up at night with bad pain.
I am never without my oxygen. I keep a portable tank with me wherever I go.
Insurance doesn’t cover it, but I bought my own regulator and I rent a D tank of oxygen for about $10.00. It lasts me about 20 treatments.
The symptoms are so unique that cluster headache shouldn’t be mistaken for anything else, but I was diagnosed at various times with trigeminal neuralgia, sinus condition, and (best of all) PSYCHOSOMATIC pain. Please educate the medical profession so more people don’t end up suicides.
A. Your story really points out the importance of a correct diagnosis. Patients and doctors need to work together to get that right so the proper treatment can be found.