Posted by Laurence (194.176.203.190) on July 25, 1999 at 21:19:37:
I hope that it does not seem unkind to those who are currently experiencing great pain in a cluster cycle, or worse still suffering from chronic clusters, for someone to take up some space on the message board with some “out-of-cycle” observations and experiences. However, these comments might just be helpful to others and I also suspect that some of the researchers in the field of clusters are probably getting valuable information from this website. It is therefore only by passing on our experiences that one day all of the pieces of the jigsaw might just fall into place.
Now by way of a short introduction, I was a fairly early and very fortunate explorer on this website when my third cycle of headaches began in May 1998. I came looking for information when after 4 weeks Lithium no longer seemed to be stopping the cycle - as it had done on the two previous occasions. A course of Prednisone, with oxygen for emergencies, brought the cycle to an end within a couple of weeks but the shadows, twinges and odd feelings went on for another couple of months more, before I felt safe enough to put the oxygen tank away – until the next time. I shared a number of my experiences with those who were posting around about that time and they shared theirs with me. Just as now, a self-help group working at its best
The gap between my first and second cycles was 4 years and the gap between the second and third was 3 years. In each of my three cycles, doctors have mentioned that the drugs they were prescribing (Cafergot followed by Lithium, Lithium again and then Prednisone) were being used to “break the cycle”. Given all that I have learned about cluster headaches from this website, I obviously now take rather more care to note any change in my “head” in case it is an early warning sign of another cycle about to start.
A few months back then, I first noted some light shadow sensations – occasional tingling feelings in my forehead and around my right eye. This was sometimes followed by a slight pain behind the right eye and that sometimes then led to a very mild but typical one-sided cluster-like headache (but only about 0.5 on the 1 to 10 scale) that lasted for just a few minutes.
While I suspect I might have previously ignored, dismissed, or just failed to notice the sensations (indications), they were eventually sufficient to make me get the Oxygen cylinder out of the garage and see my doctor to get a course of Verapamil to hopefully stop a cycle before it really got underway. After six weeks on the pills (240 mg per day), there was no sign of the clusters breaking through and even though I was still getting the occasional “twinge”, I stopped taking the Verapamil and waited to see what happened next. Well the answer so far (about another six weeks further on) is that nothing has happened next, apart from still the occasional twinge.
Now if I’m lucky, and only because of what I have learned here, I may by early observation and preventative action have stopped a cycle before it caused a great deal of pain and needed even more heavy duty stuff to “break it”. Either that or I may of course just experience extremely mild cluster cycles some years (which I had not previously noticed) and much worse ones in other years (hence perhaps the big gap – so far – between cycles for me). As prevention is better than – well perhaps as good as – cure, and certainly a lot better than excruciating pain, the comment I pass on is to remain ever vigilant. If you start to experience tingling or other mild early sensations, get onto the pills of your choice - fast. It may just save you from suffering a great deal of pain later while you struggle with probably the same drugs trying to get a “real” cycle under control.