My story...

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Posted by Riccardo ( on March 27, 2001 at 09:17:46:

In Reply to: Life with clusters, why I back OUCH! posted by Elaine on March 27, 2001 at 09:05:30:

Riccardo (b.1953)

I spent my first 21 years in Torino (Italy). Not particularly humid, nor hot, nor cold. All without Clusters. At 22 I started to play piano in a bar near Pinerolo (a little city near Torino), a bar build on a small river. High humidity, high hot in summer, cold in winter (...too much sex with customers... :) ). Cluster started there! My first 3 years of clusters were Ďmildí, in the sense I got 2 attacks per night (very long, 2 hours each) but not too painful (under the 7 Ks, I generally laid in bed during those attacks!!!). Cycle duration 2 months.

From 25 to 43 years cycles stroke in the Ďnormalí way. Three/four attacks per night (12 P.M., 2 AM, 4 AM, and a 30% of days at 6 A.M., all at 10 Ks, 1 hour of duration). Every odd day, in the afternoon, a long 7/8 Ks attack, 2 hours of duration.The cycles lasted from 2 to a max of 3 Ĺ months. Until my forties, no right diagnosis. First sinus infection, then trigeminal neuralgia, then ....any other Ďnormalí crap. Cycles happens every January (at least the end of December) with a perfect timing. Always on the right side. Only one Ďanomalyí: a short (1 month) cycle on the left side during summer. (the worst I never had, I think due to the warm and humid climate in summer.

No effective meds until my forties, the usual you could take for migraine. At 39 y.o. finally, I found a good neurologist. He gave me Verapamil, tricyclics antidepressants, Imigran and ....paracetamol. Verapamil seems to function to skip a cycle, but do not short a started cycle. Imigran does not function at all with me, and only paracetamol reduces a 10 to a 8 Ks after.... 45 mins (15 minutes BEFORE the normal end! but better than nothing)

Next year I start to use Oxygen: no miracles, but a 2 or 3 Ks less than my usual 10. In short words, I have never found a med that help me completely, but only meds that low a bit my pain.

In the 1997, after my last cycle, I started to try MY preventatives: windows always open, at work and at home (go figure the happiness of my colleagues!), never stay in crowded rooms, never take ANY nasal sprays (especially those for cold....yes also the Vicks Vaporub!) and try to cure the sinus infections at the first sign (preferably before).

I not swear that helped me, Iím not sure, but....Iím in remission from that time (means 3 cycles skipped!). The fear already exist, and is a good thing, I donít want to claim to myself Iím out of the tunnel, but Iím happy. Every end of January I make a great, happy dinner with my family, in honour to the Demon :)

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