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Showing content with the highest reputation on 06/24/2020 in all areas

  1. 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.
    2 points
  2. Writes rant about religion being like a penis. Deletes said post. Bites tongue. Whatever. Mox P.S. Please don't pray for me. No, I'm serious. Just don't.
    1 point
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