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Showing content with the highest reputation on 09/04/2016 in all areas

  1. Hi guys Just wanted to drop in with a little update. Having had the longest and toughest cluster cycle of my life which ended up in Hospital, I bit the bullet, got my credit card out and went to see a private Neuro specialist for a couple of sessions. For any UK people, the Consultant is prof. Amir Al Din at the Spires Hospital in Leeds - £200 consultation and £150 for follow ups - I did my research and he's considered an expert in cluster headaches. Quick background - I'm 35yrs old, clusters since 21.. Usually 1 to 2 4week cycles per year - coped with Oxygen and Sumatriptan. The doc told me that in almost ALL cases of CH, there is a dose of Verapamil that will "switch them off". I was dubious, as I've tried Verapamil a number of times before, but it never seems to have much effect. In his expert opinion, most people don't take anywhere near a high enough dose for a long enough time - GPs are only able to subscribe up to a certain amount and usually unwilling to prescribe the amounts needed. He was also very much against using Sumatriptan injections.. I'd become reliant on them and they almost certainly extend cycles. This time he put me on the course of high dose steroids while the Verapamil took it's 2 weeks to start working. (A standard procedure I'm sure most CH people have read about), but it's getting the Verapamil dose right that's key. I had to have a couple of ECGs at the local doctors surgery in the first 2 weeks while the dose was built up, and of course there's a few side effects (slight dizziness sometimes when getting up, easily out of breath, but that's about it). I'm now 2 weeks after finishing the steroids and on 560mg of Verapamil taken in 4 sets through the day (My consultant regularly prescribes up to 960mg for other people). It has been life changing for me - and I know it's not the cycle that's finished as I can still feel the occasional CH, but it just can't break through and never gets passed a level 1. Once I stop feeling them and know the cycle has ended I'll gradually decrease the dose until I'm drug and CH free.. and enjoy life until the next time. Anyway - thought it would be worth dropping in, just to say if you HAVE tried verapamil before but not felt any benefit, PLEASE try again as there does seem to be an eventual dose that will work for most people. Pain free wishes to all A
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