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AndiD last won the day on June 24 2020

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  1. @kat_92 - it's the normal immediate release I'm on - 4x40mg tablets in the morning, 3x at 1pm, 3x at 6pm and 4x again just before bed so 560 dosage per day. Like I said the night hits still come, but much less painful than without and sorted quickly with oxygen. Over the years I've previously given up on verapamil because it hadn't worked, but I'd never given it the 2 weeks to bed in, and had the right dosage. Fingers crossed it continues to be manageable like this. Good luck!
  2. Hi all - just wanted to post a little positivity as I feel like I’m really on top of my Clusters at the moment and wanted to pass on my success (or what we could call a success with a condition that has no cure!) 39 years old - Episodic CH since I was about 21. Really struggled through my 30s with some very long episodes and not managing the pain very well. 4 years ago today I was in the middle of a mega-bout - 3 months in and crying on the floor asking my wife to kill me. I was splitting Imigran injections to have 4 of a day, nasal sprays, 6-7 melatonin gels every nigh
  3. 240 verapamil is very low for CH - For years I dismissed Verapamil for being a waste of time, then finally saw a Cluster specialist who was able to up the dose. This dr maintains that there is a dose of Verapamil that will work for everybody - it's just that some unfortunately can't go that high because of blood pressure / other medical problems etc. Once I ramped up to 560 verapamil it was like a switch turning them off - and as CHFather said some people need up to 960. I have side effects of a bit of dizziness and lethargy, but after a couple of weeks they disappear - please persevere!
  4. I also tried it but after only 3 days I got terrible depression (which i never ever suffer from) so had to stop. If you can get past that though I've heard some good reports.
  5. Absolutely brilliant news. As I'm (very very luckily) not chronic I couldn't take part, otherwise I'd be willing to fly anywhere in the world to try and help. A HUGE thank you to everyone who's worked so hard to get this to where it is. Lets hope for some conclusive results
  6. Dr Amir Al Din, Spires Hospital, Leeds, UK - considered an expert in CH for the UK.
  7. In that case spiny I consider myself very lucky to be relatively young and with normal blood pressure! Thanks for pointing that out. I still think MM are the way forward for those that can't do the high dose verapamil but for a cheap and not-too-awful drug I think it can be a lifesaver.. If you persevere and push that dose right up.
  8. 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.
  9. I can report that I didn't even make it passed day 2 of 5mg - deep depression set in almost immediately and worse clusters than ever. I've stopped and gone back to a proper attempt at Predisone and ramping right up the verapamil til the doc actually finds a dose that works. I WILL kill this cycle.
  10. I went to see a private CH specialist consultant yesterday and he's prescribed me a course of Memantine Hydrochloride. It's a dementia drug off that apparently is getting good results for ch sufferers.. Anybody tried it or got any info before I start? - not a huge amount online about it in relation to CH.
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