Posted by John Reynolds on April 15, 1999 at 03:34:42:
The following in an excpert from an email I just sent a woman in England who was inquiring about what I thought helped my headaches go away after 12 yrs as a chronic cluster sufferer. I told her I thought the main thing was that I had quit smoking. Because it can take 5 yrs after quitting for the headaches to go away it often seems quitting doesn't play a role. But since over 90% of sufferers smoke or smoked it seems likely that in at least a lot of folks, it is a big factor:
The reason seems to be that one has to have been off of tobacco for several years sometimes for the headaches to go away. I read an article by a political reporter who would sometimes get clusters aboard Air Force One with the President, but had to suffer as the physician would not let him use the oxygen and would only offer him codeine. The headache would be gone by the time the codeine would start to work. Anyway, one neurologist finally told him that if he quit smoking, it would take about five years for his headaches to go away. And that is how long it took. I know that one case is not convincing evidence, but I have my own case as well.
When I was in my mid-twenties I had smoked for several years. I quit for a few months and then started back up again. Shortly after I re-started my headaches started for the first time. I may have told you that I was a chronic sufferer from the start. From the day they started I never had a day without at least one headache unless I was on one or more medicines (except for brief periods after getting an SPG block--an injection through the gums behind my molars on the headache side--but that quit working after a few times).
But there were periods when the drugs controlled it pretty well and other times when nothing would work and life was utterly miserable (several headaches a night of the highest magnitude of pain). Whenever I would quit smoking, nothing much would change about my headaches, but whenever I would start back up again, after a week or two, maybe a month, I would have the most horrible, longest lasting, most frequent cluster headaches of my life. These would be the times that none of the drugs or drug combinations would work. This happened at least three times, so it is more than a coincidence.
Now that after 12 years of chronic clusters I have been totally off medicines and headache free for five months, I am ecstatic. The period from 8/98 to 11/98 was miserable, but I got several ideas and moral support from clusterheadache.com. With some of the medicine and other ideass (like the cold air blowing in face at onset), I think I lessened the time period from 5 years after quitting to more like a year.
I had smoked a pack or so a day from about 1979 (age 19) until 2/96 (age 36) when I quit totally for about 10 months. Then I went to sneaking about 5/day workdays only on & off till 11/97 when I finally quit once and for all. Anyway, I know that some people who have never smoked get clusters so this may not be the answer for your husband, but it's worth a try. Let me also try to share what I did last year in terms of medicine, also.
Over the 12 years of my headaches I was usually on rather high doses of verapamil to prevent the headaches (often as much as 960mg/day). Periodically this would fail and I would have to go on something else for a while before I could go back to the verapamil and have it work. Anyway, last Fall, my new neurologist put me on Lithium (started at one 300 mg tablet for a few days, then two a day--starting slowly helped reduce the side-effects which for me was a generally spaced-out feeling and lack of ability to concentrate or remember very well--better than the clusters as bad as they were getting...some people get no side effects at all, but you need to go for blood tests to make sure the level of lithium in your system isn't too high).
The lithium alone didn't work so he added one tablet a day of Nortriptyline HCl 25mg. Also, I would let a tablet of Ergomar 2mg SL disolve under my tongue at onset of headache or if I was pretty sure I would wake up with one ( I often got them an hour after going to bed.). This is much better than the DHE injections I used to give myself in the thigh upon onset or at bedtime. The combination of the three drugs worked very well and after a month or so I tapered off of all of them. Without even a twinge of a headache I knew I could go all the way off of the drugs. I've been headache free and drug-free ever since. I realize that I may just be switching to episodic, but I really don't think so.
One further thought on quitting smoking: I didn't try to do it during a period when I was having a lot of headaches because it was just too stressful a time. I knew that it might be five years till I saw any improvement from quitting so it was hard to quit. But if I had been assured by a neurologist when I was first diagnosed that they would go away in five years if I quit (and if I believed him and quit), I would have been saved at least seven years of those miserable headaches.
I know that sometimes these headaches just go away for no known reason, but I firmly believe that quitting smoking played a big role.
Or maybe it was all the power of prayer. After twenty year of atheism/agnosticism I went back to the Christianity of my childhood. A lot of people were praying for my headaches to go away.
I hope this helps. Good luck and God bless you and your husband.