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Girltalker

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  1. Hi everyone, I've only posted on here once before quite some time ago, but I have been repeatedly reading all of your stories and the information you all share for the last year, and I wanted to let you all know what a HUGE difference all of your postings have made to mine and Andy's lives, and many others too, I'm sure. This in an incredible community for its combined wealth of knowledge, constant source of support and, of course, humour. I feel very privileged to have found all of you. Up until now, I have been mainly a silent reader (not for much longer...!) but I can't carry on with what sometimes feels like reading people's private diaries without letting all of you regular posters know what a dramatic difference you are making to lives everywhere. I mean, you can probably work this out for yourselves by seeing how many people read your posts, but I wanted to actually say it - thank you so very very very much. Bob Wold - for setting all of this up to begin with and for all the work you and the other founders continue to do. You're all remarkable individuals. Dallas Denny - thank you for the amazingly helpful 'info for newcomers' links summary here on the general board. I can't tell you how many times before this I came back to this board thinking, where was that thing about the thing that sounded important? Nope, can't find it this time! And now it's so easy to find each time. Les Genser, thank you for sharing all that you have, for the time that you dedicate to everyone who needs it, and also for the most comprehensive summary of causation and what CHs are all about that I have come across (and I have read a LOT). Bonkers, CHFather, DavidJ, Tingeling, Mystina, Agent Orange, Hipshot, Clustermom13, Cassidy, and so many more of you, thank you for sharing all that you have with your own personal journeys and advice. Because all of this empowers many others with the courage and everything else needed to follow in your brave footsteps. You're all constantly continuing to make a difference to people's lives everywhere - you might not know them, or even meet them ever, but that is what you are doing and you should all feel very proud of yourselves for this. I will post again separately today about Andy's first foray into busting on the 'share your busting stories' board. It's quite positive stuff so far and although it's incredibly early days, he just would not be where he is right now without ALL of you. Please keep posting, everyone, because it means so much. Thank you. With love and wishing that you all find pain free days in your future. Carolyn xxx
  2. Dallas Denny - Hi, thanks for your reply (love your name!) And Andy is sort of here with us, in that I read him all the bits I think he'll find interesting (I would insert smiley face here if I could work out how to do it. Pathetic I know, but please use your imagination instead!) Carl - thank you too (are you UK-based, and can I possibly PM you sometime please?) Gaius - enjoy your trip (pun **absolutely** intended). We went to Amsterdam more because it was the quickest way to get our hands on anything at that time and felt desperate above any other reason, but we had a good time for the two days we were there. Check out the Argentinian steak dinners they offer there if you go - amazing! Jay - it was 12 Euros for 10 grams. Stronger varieties 20 Euros for 20 grams. They come in a box that contain what loosely look small raisins. I'm going to try to attach a pic so you can see what they're like. I guess you can buy as many as you want, but I'm afraid I don't know about any limits - get in touch with some and they should be able to answer any more questions you have. Hope this helps to start you off: www.amsterdam.info/smartshops And in case I should have mentioned this before, Andy's never taken any meds, only oxygen and energy drinks since diagnosis two years ago. He was diagnosed in London by Dr Manjit Matharu who gave him a list of all the drug options, then said that he didn't think any of them really worked though. But then he also said alcohol consumption won't make any difference either, and everyone knows what a beer can do, so what do any of the doctors know really.... Best wishes to everyone, Carolyn x
  3. Hi Gaius, I took my CH sufferer boyfriend Andy to Amsterdam where you can try magic mushrooms - well truffles to be precise - legally. You purchase them from a Smart Shop, and there’s plenty of them around in the Netherlands. It was a good experience, so here’s everything we know and how it worked out for us. Magic mushrooms are illegal to take there as of a few years ago, but they found a workaround in magic truffles. I believe the only difference is truffles grow underground (while mushrooms grow overground) but they still contain psylocybin. The legality of buying drugs in Amsterdam works like this. They have Cafes (for food, drink and alcohol), Coffeeshops (where you can legally buy and smoke cannabis on the premises, but can’t get alcohol in the same place) and then there are Smart Shops where you can legally buy magic truffles. You can’t miss them because they all have a great big mushroom symbol hanging outside them! I believe you’re not allowed to take your truffles to a Coffeshop, Cafe or anywhere else public to actually consume them, but you can take them to your hotel room and eat them in privacy there. Also, somewhat bizarrely, smoking in public places is illegal there now, so you’re not allowed to smoke a regular cigarette in Coffeshops, but you can smoke a joint. After researching how Smart Shops work, I emailed two different ones and the one which sent me a reply was the one we went to visit. He said he hadn’t heard about using psylocybin for cluster headaches before, but his colleague had. Their email pointed out that they cannot give any kind of medical advice with regards to taking the truffles (which is quite understandable) but if we came into the shop, they could give us all the info we wanted on the different strengths they sold and possible side effects. Everyone speaks perfect English in the Netherlands by the way, so don’t hesitate about calling or emailing any Smart Shops there. In the Smart Shop we went to, they kept 3 different strengths in a fridge: mild, medium and strong. We opted for mild. We were also advised that if it feels like a bad experience, something sweet like a spoon of sugar will abort the trip immediately. Although as it turned out, the only side effect was Andy getting a bit giggly at everything I said for two hours and feeling “really happy”. We could live with that! The day we flew out from where we live in London (Jan this year) was the first 24-period in 12 weeks he hadn’t had a headache at all. We went to the Smart Shop the next day and he went a further 5 days after the truffles with no symptoms at all, then a few shadows for a few days, then nothing at all till last month (it’s currently back). How much of this was down to the cycle naturally coming to an end (although they never end abruptly for him, they always peter out) and how much was down to the truffles is at this stage unknown I guess. Which is why I’m back reading all the posts this week. I've also read your 'new member needs help' post today and my heart goes out to you, please hang in there. Have you tried Red Bull? When taken at the onset, Andy often finds this quite effective (but not coke and coffee so much, so it's more than just the caffeine ingredient). Hope this helps you or anyone else considering giving Amsterdam a whirl. I think all of you are immensely brave and you have my utmost respect and admiration for what you all go through. Carolyn x
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