Posted by Laurence on July 10, 1998 at 17:00:04:
In Reply to: Let's all answer this one . ( tad long ) posted by Yazz on July 10, 1998 at 01:00:56:
Hi Yazz,
I do hope that what follows does not read too much like some schoolteacher trying to teach a lesson to a pupil. My comments are based solely on the information I have obtained from this site and other places via DJ’s links. The most comprehensive information on clusters is accessed via the home page here, and although, as DJ warns, it can be a little heavy going at times, it is well worth the trouble of trying to work through it all.
One trap that it is very easy for us all to fall into at times is to mistake cause and effect. We experience certain effects of our illness and then mistakenly conclude that that the effect is the cause. Alcohol intolerance, for example, is one well-known effect of clusters. Most of us cannot drink any alcohol while we are in a cycle but it has no effect at all outside the cycle. Some report no intolerance to alcohol in or out of a cycle (you lucky people), while others know that alcohol is dangerous for them at any time and may drop them back into a full-blown cluster cycle.
You mention stress Yazz, and I can say that it has no effect on me. On the contrary, if anything, it is at times of low stress that I suffer from clusters.
We all read about various “triggers” (cheese, chocolate, Chinese food, stress etc.,) and discover that many of these are also migraine triggers. But, as reported in the scientific literature accessed from here, clusters is fundamentally different from migraine. There are, however, some similarities in the way that the two syndromes operate at a basic biochemical level. And it is those similarities which mean that not only are some triggers the same but also that some migraine treatments are effective, or at least partially effective, in the treatment of both conditions e.g. Imitrex.
The basic point I think for us to note about triggers is that, during a cycle, we should all be on our guard because they may make our underlying illness worse. A trigger is simply antagonising a condition from which we already suffer. One way of looking at it is to imagine that we have a wound in some cells in our brain. The chemical trigger reaches the wound and opens it so that the bleeding starts over again. We then have to apply our chemical tourniquets (e.g. Imitrex) to stop the bleeding. A cycle will come to an end for us once the wound has had time to heal properly. Until then, we have to keep the wound well covered (by taking drugs such as Lithium, Verapamil etc.) or by just adapting our life styles in some way until nature takes its course.
Clusters is hard for all of us to understand because it is affecting us at a very basic and fundamental biochemical level. Putting religious, spiritual and philosophical considerations to one side for a moment, our bodies are in effect simply complex chemical factories. It is at this “Beam me up Scottie” level that clusters strikes. Some cells (or specific parts of cells) in our body which are supposed to produce every day, 24 hours of the day, certain chemicals or mixtures of chemicals (serotonin, histamine perhaps and maybe others) stop working properly. For some of us, the more fortunate ones, these cells seem to start working again after a period of time. Hence the episodes or cycles. Others, who suffer most, have a chronic condition in which the cells don’t work properly for a year or more.
Smoking is mentioned in the literature as one (i.e. there may be others) possible cause of clusters. The reason that the books say that is based on statistical evidence. What that means is that, on average, clusterers are more likely to be smokers or to have been smokers. What may be happening, I guess, with smoking-induced clusters is somewhat similar to the trigger effect but more long lasting. Some of us may have started out in life with a problem we didn’t know we had in our cells (and that might just be at a genetic level). When we started smoking (and I haven’t smoked cigarettes in over 20 years, but cigars well, now there’s a different story) the nicotine, tar or whatever in the cigarettes or cigars opened up our hidden wound. Most smokers, however, don’t suffer from clusters. It is only some smokers who are more inclined (i.e. at risk) to suffer the condition.
Other possible causes for some are an injury or trauma to the head. This includes (botched!) neuro-surgery.
The fact that some drugs seem to work for some but not others, or that some drugs only work for a period of time, may be due to a number of factors. First, some of us just have a lighter “wound”. The drugs work for us because our cells are still producing enough of the relevant chemicals to keep our condition at tolerable levels. Others have a much deeper “wound” (very little chemicals being produced) and the drug tourniquet just isn’t tight enough to stop the “bleeding”.
Secondly, any drugs in our bodies are in effect foreign agents. Our liver, kidneys and other organs work fast to remove them. In some of us the drugs are quickly filtered out of our bloodstream. In others, the drug sticks around much longer. To take full effect the drug has to be present at particular levels or concentrations - the therapeutic level. The problem is that while the drug is doing its best as it were to help us, other parts of our body are doing their best to get rid of it.
Thirdly, our condition may naturally be getting better or worse at particular times or in different cycles. In bad cycles the drugs no longer seem to be working simply because they have that much more to do. It is not however always possible simply to increase the dosage of particular drugs. Drugs that are otherwise safe at a lower dosage can become very harmful and even lethal to us at higher levels.
While the precise causes and mechanisms of clusters is not yet scientifically proven, enough is known about it for the doctors to be able to hazard more than a guess about what is going on in our heads. They have some of the picture but not all. In time they should, if we are lucky, work out precisely what this illness is all about. They may well then be on the road to finding a cure. Someone, somewhere, may have lucky break - for them and for us - before then and fall upon a cure - luck played a large part in the discovery of penicillin.
Despite all of the comments above, separating out cause and effect at the biochemical level can be surprisingly difficult even for scientists. There are those who would argue that our condition is the result of some kind of infection, a problem with yeast or even simple caffeine. They may still yet turn out to be right. As was remarked before on this web site, it was only a short while ago it was discovered (and I think it was by chance) that most ulcers were caused by a simple viral, or bacterial infection. Once that was known, the cure/treatment for ulcers was quickly found and so much that had been written in the most learned textbooks about ulcers up to that time, turned out to be totally wrong.
We all live and learn, eh? Oh, and sometimes we get a lucky break too!
Bye
Laurence