Posted by Matt (212.44.60.50) on January 02, 2001 at 11:22:40:
I am volunteer in a Dutch CLuster survey, they co-operate with the team in London (Goadsby).
Recently I received a first evaluation by the researchers and they said that according the data they now have(over 1000 Dutch patients filled in questionaries) that 97 % of us smokes or have been a smoker in the past and that 93 % of us are drinking more alcohol than the average in population.
They also found out in this survey that more women than they expected are having clusters.
I want to do a little survey for myself or maybe someone knows about existing data? And that is, how many of us have the painattacks on both sides on the head, not simultaneous. I want to know this because the researchers believe if one has painattacks on bothsides on the head it is not a real cluster but some kind of mixform of headaches. what it is I dont know either....
Are there more people who have attacks sometimes left side and sometimes right side head?
What was really interresting for me to read was that the researchers now want to investigate and suspect smoking causes CH or a malfunction in the head which triggers CH and they think so because of the high % smokers and ex-smokers among us.
so basically they mean (I think or believe) that smoking did irreversible damage. PLease email me or follow up on this message, I really like to know what percentage of us have the attacks on both sides of head or maybe someone has similar experience I had?Because I am still a smoker myself ( i now not healthy but that is another topic) but at first had several years only left side of my head attacks and now since 4 years also developed attacks at right side head and I dont really believe my ongoing smoking also caused my right side of head to be vulnerable. I for my self rather believe that taking SSRI for one year caused this rather than smoking did because when I took them the imitrex was little effective (maybe 80 % of attacks were stopped) and became effective again after stopping the SSRI (Prozac).(normal the imitrex is for me more than 99% effective)And also the pain was more frequent and more out of control (many daytime attacks which i didnt have before and more painfull attacks (scale 10 ))and at that time (when I was taking Prozac)I first had the attacks on both sides of head.
I wish you all the best and clusterfree days in 2001!
BTW
In Holland estimated 6000 Clusterpatients (population 16 million)would that make in US estimated 115.000 Clusterheads assuming Population US is 300.000.000? and how many of those 115.000 (It is a whole army of CH sufferers!) clustersufferers in US have visited this site? Just a thought.
PS NOTE: Holland has one of the highest % smokers in European Union countries.