Gidday Folks

I think it would be worthwhile me sharing some of my experiences with this beast, maybe they will help someone.

A bit of background. I unwillingly joined this elite club back in 2005 but was diagnosed officially in 2007 after becoming quite suicidal, I just figured that if this was what my life was going to be like I didn't want any part of it. I was quite sure that I was dying in anycase, it just wasn't possible for something to be so sore and not life threatening.
When I was diagnosed the neuro put me on a drug called Migril (contains Ergotomine and caffiene) for two weeks and Lithium Carbonate as chronic medication (forever). Hey presto and I had my life back! I can still remember the shear joy of going to sleep that night and only waking up the next morning.

As these things do the Lithiums effectiveness wore off and the beast came back but by that time I had found this site and, thanks to the advice here was much better equipped to tackle him head on. I found a good GP who would work with me and found that I am very receptive to Verapamil, so since then I have been largely ok. I do get sporadic breakthroughs and seem to have one high cycle which used to happen around mid summer, then I include Lithium in the daily dose and between the two of them they usually deal quite effectively with the clusters.

Back in South Africa I was quite convinced that the cycles were related to heat, when I moved to New Zealand, a much milder climate, they just about disapeared, I had two very light hits just after arriving here and then nothing for months. I cut the lithium, cut back the Verap to 160mg/day from 480 and was ever so happy. Of course this was not to last and 3 weeks ago, mid winter, back they came. No worries, I know what to do so am ramping everything up again and staying away from beer in the mean time.

This brings me to the main point behind this post and that is using Ergotimine as a prophylactic. Whenever I am ramping up on the stalwarts I use Ergot as a temporary preventative. I am now on 480 mg Verap a day that I take in three doses of 160mg, 800mg Lithium carbonate taken 400mg morning and 400mg night time and 1 mg ergotomine taken in the evening. I do this because I know that if the beast comes to visit 7pm or around there is his favoured time. If I take the Ergotomine about an hour before I expect an attack it is 99% effective in keeping it away. I also take a melatonin capsule at bed time.

I know that there are complications with using Ergot long term so I try to limit it to two weeks maximum and it really has been a life saver for me. It doesn't work very well as an abortive though because it just takes too long to react.

Cheers,

Wayne

I'm glad it works for you, Wayne. Way back in '87 when I was diagnosed with CHs, the doc put me on verapamil and cafergot. It seemed to work for awhile but eventually it lost all effectiveness. All in all, I was on ergots for about 20 years, with decreasing effectiveness. Seems to be the nature of the beast. May you find better results. blessings. lance