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      Welcome   01/25/2017

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Tony Only

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Tony Only last won the day on January 7

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  1. There's a wide variety of exercise people use to even "turn back" an approaching hits or treat that shadowy feeling. Does not work for everybody, for some it makes things worse. Would it be possible for you to look into O2 again ? How you use it makes a big difference how well it works. You could get a tank to your work maybe ? O2 is at least as efficient as triptans BUT does not contain the risks that triptans do creating additional more severe attacks and lengthening the pain cycle. I personally would never take a triptan for an attack, only O2. If you go to work after a hit and are still in pain, that might be the "shadow pain" in between the attacks. Taurine (energy drinks) might be good option for that as well as Liquorice Root tincture (there's Herbal Protocol here in the board somewhere, this can't be used with triptans or several other prescriptives but can be used with busting).
  2. I wish you a celebration of the day of your birth ! Users of this board can probably relate to this little quote. "The struggle ends when gratitude begins." -Neale Donald Walsch Feeling very grateful for the help I and so many have received. Have a good one !
  3. For anyone looking into the subject of trying to have an impact to cluster headaches via personal diet, I can give my highest recommendations for the book Brain Chemistry Diet by Michael Lesser. As a personal opinion as many diets might help us as a patient group, after all we are individuals and each cluster headache is a little bit different. A custom made diet for cluster headaches would be rather interesting, one of targets probably being an effort to be able to affect our ("faulty"?) brain chemistry. Someone in the orthomolecular field came first to my mind. Many have found personal diets already that help them with cluster headaches. Here's the book on Amazon (I think some have a way to get a preview of the book there?) https://www.amazon.com/Brain-Chemistry-Diet-Michael-Lesser/dp/0399147446
  4. I think it was late 2006 when I heard for the first time about an american patient group that were pursuing after effective treatments for cluster headache. I really dug their name. They were called Clusterbusters. Here in Finland there was a lot of badmouthing about them, bunch of patients who only want to "get high" even from such people who really should have known better or should have had more wisdom to look at the whole condition and treatments objectively. I didn't care much about that. It is amazing to where Clusterbusters has come since then and what Bob Wold and everyone at Clusterbusters has achieved for us, do we know or understand it today in 2017 or not. Thank you Sir and everyone involved.
  5. Hell, I'm not even sure what my display name has been in 2010 when joined. I browsed through My Account but could only find "current e-mail address", could not find what it was back in 2010 or what the ID was.
  6. So, are the administrators able to directly fix any issues after the update ? I don't have a clue with what e-mail I have signed up with (if I can't check it now from anywhere on my account?), it's possible it's an e-mail account I don't have access anymore to. Should it be the case are you able to fix things for those who contact via e-mail for an example after the update ?
  7. Don't forget to have another blood test, then you can also calculate how the amounts you have been using have affected on your levels, on your personal case. If you can get oxygen that will eliminate most of the panic in life because though you still get hit, you can abort every hit quickly. Easier to weight your options with calmer mind. In Lithuania this company should deliver sufficient O2 equipment, at least they do in Finland http://www.linde-healthcare.lt/en/products_services_ren/products_services_care_area/homecare/cluster_headache/index.html Any questions about oxygen, just ask. Wishing you all the best Please keep us updated.
  8. Many of us have issues with our eyes and eye-sight, it can be and probably is cluster related but not related to blocking. If something is blocking the MM now and did not couple of years back, what's different ? Any prescriptions, vitamins, something in the diet ? Since Vitamin D is not obviously working at the moment, I would not hesitate to pause it and if you don't know your blood level, I would pause it today.
  9. Have you been using a lot of MM recreationally as well, not just to treat CH ? The most usual types of difficult clusters (that I know of) are the ones that start straight out chronic and do not respond well to any treatment (not your case) and ones that have transformed from episodic to chronic with too much (prescription) medication overuse (not your case). If one views alternative treatments as others, they can be overused as well (in my opinion) and lead to less response - not just psychedelics but others as well. My suggestion would be to tell your doctor the truth if that does not lead to any severe trouble with you, but caution is wise since I can relate to where lack of understanding can lead. And have that MRI. I am not a supporter of verpamil as treatment for clusters but it helps some so it can't be ruled out. Oxygen on the other hand I would recommend for everyone and if it does not help it's usually done wrong. Inadequate flows being the most usual thing and/or wrong kind of masks. High-flow oxygen with proper masks should be one of first priorities. Vitamin D is not safe either when used as big amounts for long periods of time. Have you had your blood levels tested concerning Vitamin D ? If not, please do that ASAP. Liquid Vitamin D's plus "sprays" are usually in very high concentrations. What's your product in IU's ? I know few who had a rough time with clusters when their blood levels were approaching toxic levels.
  10. Chance to get oxygen ? If not, chance to try it to treat an attack at this resistant cycle ? EDIT: I re-read your posts. What has been the response from Vitamin D ? I would not rule out LSA (seeds) if you have only tried them once. Potency varies from batch to batch like we've seen so many times in communities. I think I saw a pretty good LSA extraction file in Facebook somewhere.
  11. I think the amounts of MM mentioned in the beginning of this thread are quite large (3-4 grams). And you mentioned sometimes not having any effects. Is your MM coming from the same source all the time ? I would guess the busting material is faulty. Or if it is not, used by someone else for an example, my second guess would be something blocking. It does not have to be a prescriptive medication, it can be something else. Your CH certainly sounds very resistant so an MRI should be taken (sorry if this was already suggested) and maybe consult a neurologist if that is possible. He/she most likely will not agree with instructions given here. For some changing tryptamines does the trick when one stops working (momentarily) that has been effective in the past. I think LSA (RC seeds, HBWR seeds) is at least as good as psilocybin in MM. I would try that. Then there's LSD like you mentioned but if it's scary put a weight on that feeling as well. Then there is 5-MeO-DALT which did the trick for many of us but it's hard to find outside US. Have you thought about other options than busting, besides pharmaceuticals ? Adjusting you diet ? Anti-inflammatory regimen (Vitamin D + others) ? Herbal Protocol (Liquorice Root + Skull Cap) ? How has your CH reacted to taurine (energy drinks) or have you tried any ?
  12. Just stumbled into this thread, anyone at any point setting anything up in Europe, you can contact me. I think some finnish patients would definitively participate and I can pass on the word about it. We have had meet and greets for patients only so far in Finland. Things will hopefully change big time in future years to more conference like gatherings including doctors and medical field as well.
  13. Hey, where are the PICTURES ? They are everything to me, to be able to see all you fine folks and conferences in pictures afterwards since I am only able to be there in spirit
  14. To add to the above: On this particular cycle I had little to no success on breaking the cycle with tryptamines so I had not used them in a while when going at it with energy drinks, I don't know does this play some kind of part with my great response. I also had no chance to obtain (switching) tryptamines I believed might have worked better than what I had (psilocybin & LSA). I got the idea since I have a habit of listening to shadows, do I need to abort with O2 or not, and sipping energy drinks. I started to notice they might prevent hits completely on very small amounts. When I decided to try it out, I also made very sure not to use any vitamin B supplements (had been using strong vitamin B's every now and then) since I think these vitamins play a role in why energy drinks help (not just the taurine). I was also remembering some posts where people felt energy drinks don't work as well if you're using a lot of vitamin B. So all my vitamin B intake came from these drinks. Preventing with energy drinks worked so well for me that I was able pretty soon to only use half a drink, later even less. But I'm a lazy guy. So when I had a whole day ahead of me full of things to do and even if I hadn't been shadowing or expecting a hit I noticed myself drinking these as kind of extra shelter to last the whole day. The more I used them (on hectic weeks) the more I was worried they might lose their potential like everything in CH. But they didn't, they didn't fail me once. When the cycle was over I quit drinking them. Since then there has been a short activation lasting a week or so (during "sun storm" in Finland) and again they came to my rescue. I'm pessimistic as far as treatments and my personal case goes so I think they might not work this well every year. Then I plan on doing the switching, between liquorice root tincture and energy drinks.
  15. I've never heard of successfully preventing a hit with O2, many have tried. I think the mechanisms of action are very different on O2 and energy drinks. Vasoconstriction probably being connective mechanism on both though.