Posted by annemarie (184.108.40.206) on December 05, 2001 at 17:02:06:
Got a letter today from the top cluster neuro's in this country about their ongoing survey, about new avenues of research etc. Neat - and I am not even a patient of theirs - I just contributed to the survey. Yoke is though.
So they have confirmed that they get many more women than would have been expected.
Now DON'T go jump up and down and scream that we KNEW all that already. Of course we did. Be glad there are docs here forcefully putting this fact forward. Now it is becoming a medical fact. Handy things, medical facts... We need more of'em.
So they have discovered that there is a large percentage of CH sufferers out there that have atypical CH, e.g. attacks that go on for hours and hours and hours. Do I remember rightly? Were there some folks foaming at the mouth on this MB: "If it takes hours & hours, it can't be clusters." Maybe not, maybe so.
They found, btw, that the imitrex nasal spray that isn't thought al that much of here, I gather, works well for these atypical clusterheads if they can't inject. Gets them off at 45 minutes in stead of 2 hours.
Finally, they are joining the search for hormone-related CH in women, they are lobbying for scans to be done on clusterheads and non-clusterheads and they would dearly love a video of a cluster attack to convince doctors in the field.
Seems like somebody has been talking to Dr. Goadsby :).
Seriously, I am glad of this interim report. Food for thought.
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