Posted by J.D. on April 25, 1998 at 14:31:45:
This is actually a good story with, so far, a good outcome. I am a chronic cluster sufferer, but I have been headache free since March 28, 1997.
The headaches started in 1991 and gradually increased in severety and frequency. By 1993 I averaged 2-4 per week with as many as 8-10 (maybe more) per week. Overall, there was a vague pattern of waves -- a bad period of a week or two followed by a slower period of from two to six weeks.
The trail to find the cause has included pulling a tooth and a neurologist. In February of 1993, it started as an abscessed tooth which resulted in a root canal, then discovery of a cracked root in the same tooth, and finally pulling the tooth. I went to a neurologist who diagnosed the condition as Tic De La Rou or Trigeminal Neuralgia and prescribed Tegretol in increasing doses and then added Neurontin. In general, those medications did little to affect the headaches. When medication doses increased, I thought the headaches were beginning to subside, but they returned within 2-4 weeks the same as before.
Early frustration with the headaches turned to resignation. The techniques I used to keep them under control keep them relatively manageable (short duration) most of the time. (I used Extra Strength Bufferin (500mg), 2 to 4 at a time, chewed and disolved, then swalowed. Believe it or not, they worked. Rarely did a headache last more than about 10 minutes after the aspirin.) I have a relatively high pain tolerance anyway, and I built up a mental conditioning to accept the headaches. As long as the techniques worked most of the time, I resigned myself to live with them.
Unfortunately, my resignation to frequent "zone-out" headaches angered my wife profoundly. She thought, somehow, that I was unconcerned with how they affected her. She thought I was not actively pursuing a cure. It resulted in a number of major arguements. Actually though, her anger lead me to recognizing what they were and getting free. She said, "Get on that damm computer and find out what is going on." Starting with Trigeminal Neuralgia, lead me to the Mass General Forum where I realized they were CLUSTER. I have a friend of over 20 years who has clusters, we talked, and he referred me to his doctor at the Mighigan head-pain & Neurological Institute in Ann Arbor.
At the initial visit, the Doctor confirmed my self-diagnosis. (He was quite surprised that the aspirin worked until I explained how I used it.) He prescribed Verapimil at 480mg / day. Because I also have high blood pressure, he consulted with my internist and they finally agreed to use Verapimil to replace my regular BP medication. I started Verapimil on March 29, 1997. The last cluster was my regular Friday night headache on March 28.
Verapimil works wonders for me, probably because I can stay on it (at 360 mg/day) to control blood pressure. I know from slight tenderness in the old spots that I am right near the edge of losing control, but so far, so good.
I wish all of you can find a competant doctor and a medication that works. I found mine, and it is like a new life. If anyone is interested in more info, post a response and I’ll get back to you.
This is actually a good story with, so far, a good outcome. I am a chronic cluster sufferer, but I have been headache free since March 28, 1997.
The headaches started in 1991 and gradually increased in severety and frequency. By 1993 I averaged 2-4 per week with as many as 8-10 (maybe more) per week. Overall, there was a vague pattern of waves -- a bad period of a week or two followed by a slower period of from two to six weeks.
The trail to find the cause has included pulling a tooth and a neurologist. In February of 1993, it started as an abscessed tooth which resulted in a root canal, then discovery of a cracked root in the same tooth, and finally pulling the tooth. I went to a neurologist who diagnosed the condition as Tic De La Rou or Trigeminal Neuralgia and prescribed Tegretol in increasing doses and then added Neurontin. In general, those medications did little to affect the headaches. When medication doses increased, I thought the headaches were beginning to subside, but they returned within 2-4 weeks the same as before.
Early frustration with the headaches turned to resignation. The techniques I used to keep them under control keep them relatively manageable (short duration) most of the time. (I used Extra Strength Bufferin (500mg), 2 to 4 at a time, chewed and disolved, then swalowed. Believe it or not, they worked. Rarely did a headache last more than about 10 minutes after the aspirin.) I have a relatively high pain tolerance anyway, and I built up a mental conditioning to accept the headaches. As long as the techniques worked most of the time, I resigned myself to live with them.
Unfortunately, my resignation to frequent "zone-out" headaches angered my wife profoundly. She thought, somehow, that I was unconcerned with how they affected her. She thought I was not actively pursuing a cure. It resulted in a number of major arguements. Actually though, her anger lead me to recognizing what they were and getting free. She said, "Get on that damm computer and find out what is going on." Starting with Trigeminal Neuralgia, lead me to the Mass General Forum where I realized they were CLUSTER. I have a friend of over 20 years who has clusters, we talked, and he referred me to his doctor at the Mighigan head-pain & Neurological Institute in Ann Arbor.
At the initial visit, the Doctor confirmed my self-diagnosis. (He was quite surprised that the aspirin worked until I explained how I used it.) He prescribed Verapimil at 480mg / day. Because I also have high blood pressure, he consulted with my internist and they finally agreed to use Verapimil to replace my regular BP medication. I started Verapimil on March 29, 1997. The last cluster was my regular Friday night headache on March 28.
Verapimil works wonders for me, probably because I can stay on it (at 360 mg/day) to control blood pressure. I know from slight tenderness in the old spots that I am right near the edge of losing control, but so far, so good.
I wish all of you can find a competant doctor and a medication that works. I found mine, and it is like a new life. If anyone is interested in more info, post a response and I’ll get back to you.