Posted by betsey on August 29, 1998 at 16:08:11:
For 30 years, I bent my right arm on top of my pillow and placed my head on it overnight. This caused 2 weak spots--one at the right base of my neck and another under the right shoulder blade. Today, when I feel my cluster headaches moving up, it is from one of these 2 places.
During an episode of a cluster, I try to find what I am doing that "opens up" these weak spots. Of course, I no longer use my arm as a pillow. I used belts at bedtime to keep my arm restrained next to my body and after only 2 nights of tossing & turning, I broke the habit.
The next cluster I got was always at 6pm, after my drive home from work. I realized I was resting my elbow on the car's arm rest which was lifting the space under my right shoulder blade. Another time, I found I was cradling the telephone with my right shoulder which opened up the weak spot at my neck. Another cluster ended when I realized I was sitting on a couch with an oversized upper pillow which pushed my head forward allowing the headache to move up from my neck.
Since the cluster headaches attack my right side, I now use my left side more. I bring objects to my right hand with my left, open doors, dial & listen on the phone, drink, etc. I wear a mini-backpack for a briefcase to evenly distribute the weight instead of slinging a strap over my right shoulder and leaning to compensate for the weight.
Over 10 years, I have been eliminating physical movements which directly cause headaches. I constantly avoid getting out of position.
I am currently experiencing clusters about an hour after falling asleep. It is often too late to stop the headache with oxygen. On a scale of 1 to 10, where 10 is suicide, I have had an 8, an 8.5 and a 9 in the last week. I could no longer endure the pain or the effects of aspirin which I took at night and the following morning. I am using prednisone for the second time. Taking medication was my only option.
I am experimenting with different pillow configurations in order to keep my neck in a straight line and supported. The prednisone feels like it is "puttying up" the 2 places from where the headaches eminate.
When I describe a cluster headache to my neurologist in these terms ("move up", "hot lightning bolt of broken glass", "stay in position", "open up", "poisons flowing", "headache hangover"), he doesn't understand. However, I have never read or heard a medical report which does explain the source of the pain. I assure my doctor that he would never survive a cluster headache. This amuses him.
I wish I knew why these movements allow a headache to progress. What is that "poison" that flows up into the neck, temple & behind the eye?
I'd like to hear from anyone whose story is similar.