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Everything posted by AndiD

  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 night and getting through 2 big bottles of oxygen a week. I was a mess and CH had just taken over my life. Tried magic mushrooms which unfortunately was an awful experience as well. Finally went to see a CH specialist doc who turned things around for me, weaned me off the Imigran injections and sprays and put me on verapamil. His opinion is that there’s a dose for verapamil that will work for every CH patient, but of course some people can’t take a high enough dose due to health problems / blood pressure etc. Now whenever I feel a new cluster period coming on I start straight on with 560mg verapamil a day (taken in 4 doses over the day), and I’m allowed to up that to 960 if it’s not quite working. I also take 4000iu vitamin D throughout the year now as a matter of course (thanks Batch). Right now I’m nearly 3 months into this season’s bout and my days are completely pain free. At night I’m still being woken by 1 or 2 clusters, but they’re a 3 or 4 pain max and I just roll over to my oxygen, 10mins sucking on the o2 and I’m straight back to sleep. Now I always make sure to have my ammunition tucked away safely at home ready to grab whenever I feel a new season starting: 2 week big-dose Predinsolone steroid dose on a taper - these are to have while the verapamil starts to work as it can take up to 2 weeks. I think the steroids are actual magic as they work within 24 hours and give you a week pain free - you can even drink alcohol, but ideally I think people are only supposed to use once or twice a year due to long term effects. Lots of packs of verapamil stocked piled during my none-CH periods. 2 full Oxygen cylinders in the garage Fortunately I’m in the UK so verapamil prescription costs me £9 for 2 weeks worth and Oxygen tanks are just delivered for free whenever I call up and ask. Thank you NHS . It’s really empowering to feel like you’re winning the fight, and I’m sure I’ll have bad clusters again at some point, but right now I’ve got my defences all shored up and the enemy can’t get through. TLDR: - If you’ve not tried high dose (500mg +) verapamil and you’re in relatively good health, please speak to your doc about it. Remember it can take 2 weeks to feel the effects, and you’ll feel shitty, dizzy and a bit poorly for a few days. It will pass. - Oxygen is a basic necessity and every CH sufferer should have this. - Try and stay away from Sumatriptan if you can - it’s instant relief but with long time problems.
  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! Not sure what country you're in but UK GPs aren't able to prescribe the high enough dose so you'd have to be referred or just pay for a private appointment and been seen straight away. Good luck!
  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. 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
  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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