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Mr B

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  1. Today's Independent newspaper over in the UK ran this story today based on some research out of Norway. And no it doesn't mention CH once. http://www.independent.co.uk/life-style/health-and-families/health-news/hallucinogenic-health-trip-lsd-may-not-be-bad-for-you-says-study-8798900.html
  2. Mr B

    Carl Is Dead

    I never met Carl in person but we regularly emailed when I was in cycle about 10 years back. He was someone whoÂ’d genuinely go the extra mile to support another sufferer and IÂ’m more than grateful for his support. His posts on the OUCH UK messageboard that dared to promote alternate clusterbusting techniques as a clinical remedy for CH caused all sorts of problems for the moderators, resulting in his being ostracised from OUCH UK and banned from posting at all. After a quick look at the OUCH UK website and messageboard it remains pretty much fact free when it comes to promoting or discussing alternative treatments and I struggle with the ethics and morality of any CH organisation in withholding key information for sufferers. Maybe itÂ’s time to rattle a few cages again in his memory Shine on you crazy diamond
  3. Do apologise if I upset any unduly sensitive folks. The issue with wine was simple - is it alcohol or tannins? - both are headache triggers. As for accuracy if you check my first post I said 'I'm guessing three days minimum' that's a request for information rather than a statement of fact. My motivation is simple I can't dose near my children and it breaks my heart when they see me getting hit. So not really preachy Ron, but your second post hits the spot nicely even if lacking grace or sentiment.  Â
  4. That's a bit of a beastie - guessing it's down to the regulator. Shall look into it after upgrading the bag size. Probably after finishing the wine - White rather than red, good bouquet, nice body and most importantly a very good long pain free finish!
  5. Apparently the route to 25 lpm is through hooking up three concentrator units, might go for the bigger bag first. BTW Wendy I'd be tempted to go for three days detox from Imigran which might be possible if you've decent high flow O2 in place.
  6. Top tip don't know anything about the higher flow rates but I'll ask, currently the cylinder's 15 lpm. Certainly it can be limiting if you're trying to up your metabolic rate when you're on the tank. Happy enough with the mask I use it basically vents O2 into a bag you breathe out of - might try a bigger bag in the meantime. The one nailed down trigger I have noticed is the hot bath, which is kind of ironic since in the dark undiagnosed days immersing my head in a really, really hot bath was as close to relief as I could get. Definitely trying a cheeky white wine tonight, and sticking to the programme - alts, O2, Red Bull, black coffee and seriously hot chilli peppers. Only noticed the chilli making myself pasta the other week. Since it was just for me, not the family, I used a dried habanero for heat. The result, however tasty, certainly wasn't child friendly but did noticeably clear the head for an hour or so.
  7. Still going strong with both the cluster and the alts. Up to four doses now, all a week apart and still triptan and red wine free. Last Sunday's hit was by far the worst of this cluster spending about an hour on the O2 and was followed by dosing. Was pain free for about 36 hours till this morning. Getting frustrated this cluster's overstepping the mark.
  8. Thanks for this. Getting really frustrated with this cycle. Tho' I do remember it usually takes at least a couple of treatments to stop the cluster completely. So far it's been the last three weekends on the bounce treating with alternatives and it's still not done yet. Worse still I'm noticing red wine is a possible trigger which it definitely wasn't before. Great opportunity to do something about not drinking enough white at home so it's not all bad since there are some cracking whites I really enjoy. But first after a good few days dry tomorrow I think a lightly chilled Beaujolais is in order even if it ends up being washed down with O2.
  9. After a few years gap I confess to being very impressed with all the developments that have gone on here, not to mention how this community has gotten bigger and stronger. I’ve had ECH for about 12 years and after just two clusters in the past five years I was really hoping things were getting better. The past couple of weeks suggests not. I’m already a convert to clusterbusting having had awesome results in the past, mostly with psilocybin mushrooms. In the past I’ve stuck to O2 and alternatives, really not wanting to go down the verapamil route and actively disliking the triptans I’ve tried – an approach endorsed by the last neuro I saw. However I’ve had to relent after getting hit in a meeting this week with no O2 to hand. Having bent the needle on the Sumatriptan injector in the past (so hard not to flinch when you know what’s coming) I opted for a Zomig nasal spray. Whilst it wasn’t perfect it was better by far than no relief at all. What has surprised me is that for the past two weekends I’ve dosed using mushrooms with little joy so far. So how long after having had the Zomig should I leave it before dosing again? – I’m guessing three days minimum?
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