Tony Only

Busting is hugely effective but for those who can not get to it for some reason or the other there is also the D3 vitamin regimen, legal, safe, efficient and cheap. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416 Regimen in PDF file http://tonyonly.pp.fi/ch/VitaminD3.pdf And if your girlfriend is off the prescriptives, good options to go with busting and D vitamin are liquorice root and skull cap. Legal herbs which I have used for years and I have found them very effective against CH. http://tonyonly.pp.fi/ch/ch_liqoriceroot.htm I wish your girlfriend strength to endure and so great you are beside her. All the best

Gene study has been ongoing in Finland as well in the last few years. If I have understood correctly the researchers wished for more patient participation. I will post the results here when I hear them.

Very good suggestions everyone ! I really think people would be more into donating when they get something in return.

No experience of kudzu but definitively worth a try Have you considered Liquorice Root protocol ?

There has been a rather interesting discussion in Cluster Headaches Facebook group, people telling about their experiences of getting scared all of a sudden in the middle of an attack and at that point ongoing CH attack disappearing. Scared by an other individual, scared of the cops in traffic etc. I think it is interesting idea and only today learned that your hypothalamus plays a crucial part when "getting scared all of a sudden" so there really might be something in this. Experiences, everyone ?

Correct me if I am wrong but shouldn't you keep few days apart between doses just as with mushrooms?

Other folks here can guide you better with busting than me. You are now off the verpamil right so seeds could be an option, easy to obtain when you run out of mushrooms. You can find liquorice root protocol here in the message board, it has been good to me but can not be used with medication. Here's a direct link for the article http://tonyonly.pp.fi/ch/ch_liqoriceroot.htm I am following Facebook mostly (there is a great group called Cluster Headaches) and it really looks like D3 vitamin regimen is helping lots and lots of folks. Maybe you could adjust that and find relief? It takes a little researching what you personally might need and blood tests of course to find out your levels. All the best

I will edit that post to make you sleep more calmly. A lot more discussion needed about O2, especially when it is not doing it's job. I firmly believe O2 as the best abortitative in CH. For those with who it does not "work" I think the way to use it needs to be corrected and most could have it "working" again. So, more talk !

This whole thread kinda opened up some things about my personal case. For me, it was all about nasal pathway. But that was only when I became chronic with 4-8 attacks every day. As episodic, any O2 any way worked as long as flows very big enough. It was pretty much the similar deal as with the pain itself. Evolving. As my first years with clusters the pain area was at least fist size area behind my left eye and the pain was survivable. 15 years later the area had shrinked to a size of a point of a needle and the pain had increased to insane. My oxygen use evolved. I gave up on it twice. When I found bigger flows the highest of them 20-25lpm kept working all the way my chronic years until I busted and terminated the whole motherlover. I still have all the masks. Several bottles with different flow setting plus the demand valve bottle and demand mask. Demand never helped me one bit I have always though it was about the flow but now reading this and thinking it was probably about the nasal passage. The cushion was made so small you could only fit your mouth in it. So thank you, now I have something to share and suggest to try with finns who have demand valve & mask and it is not helping. This matter is too little discussed, is it because it is this way with only some of the patients or do people just give up on O2 thinking it is not helping them I don't know. To have this thread is a great thing

I have not received updates either for some time. Somebody had contacted Entheogen privately and posted reply received on Cluster Headaches Facebook group on 16th of December 2012, latest reply from Entheogen "We are still on track with the medication development process of BOL-148 and made more significant progress so that there is hope that the process will begin with experiments in humans next year. A company was found who is willing to develop the molecule into a medication and the appropriate contracts were signed."

I am sorry if I somehow offended someone with my post, that certainly was not my intention. You could not go through the posts, they are in finnish. I do not know what the mechanisms here are. Is it the nose/sinus cavity or the lungs. This is not a fact, it is how I have interpreted it: Many people who use oxygen as an abortative the stuffiness (hope that's the correct word) of the nose is usually at play during attacks. If the pain side nostril is stuffed so badly that O2 can't get through it, the oxygen will not start to be effective until that nostril is open. Is that a cavity, lung, bloodstream, whatever thing I do not know - this just pops up again and again in people's posts. I also have the "gut feel" that this is more clear the more severe your CH is. I am not saying anyone "needs" to follow this if O2 works like magic. When it does not work anymore, you have gone through all the masks and are as high flow-wise as possible I am saying there is a need to research the mechanisms of action. For me it was a breaktrough when somebody wrote about this, then I knew exactly what I needed to do. Abortive success rose from 65% to 99%. I mean well, not trying to play Jesus here. MODIFIED: I also don't know could the location (Finland) play a part. During fall/winter/beginning of spring we have really dry weather here, I mean really. Air humidifier in the bed room is a standard thing for finnish clusterhead.

This is what I have learned from the posts of finnish CH sufferers over the years, I can not point any study or solid information. I am this way myself, oxygen on the non-pain side only did not affect my attacks. The finnish site is at http://www.kolumbus.fi/geodun/cluster5.htm The section is called "reader's letters" and has a few thousand posts all the way from year 1998.

http://www.causes.com/actions/1725184 I created another Action to benefit Clusterbusters. Please share as much as you can (Facebook, twitter or simply the link). Thank You

I'm envious of your sun heilette 8-) If someone in Finland has seen the sun it is talk of the town for days. :-[

I think I will give this one a go some time. Mostly for what it's made for (no daylight here in Finland too much..) but serotonin and melatonin activation surely would not hurt either. Thanks ting ! 8-)

For some of us it is essential where the O2 "hits". My CH has always been on the left and for me it was crucial to get O2 flowing in my left nostril. The faster I got there (got the nostril open etc.) the faster I got relief. On my case, mouthpiece did nothing. Never tried sticking it in to my nose though. On some KIP10's I even threw the mask away and hit that O2 to my nostril straight from the tube. (Not to be an advice to anyone) From what I have understood from finnish posts (here in Finland) from hundreds of people with CH it seems that majority needs oxygen on the side their CH is on. Could he not get a mask for free from ER ? Asking there would probably not hurt. EDIT: As shocked pointed out, O2 on the pain side is not common everywhere. This one needs a lot more discussion, I think.

Thanks DD, I got in touch with CHfather

Could anyone in this board help me to get in contact with Les Genser? I have tried but with no success. Last login is a pretty long time ago. I have been sharing liquorice root protocol a lot and having means to communicate with Les would be great. Thank you.

Beautiful thing from PhilW to describe an amazing spirit even to us who never had the fortune to meet him. Wishing you a peaceful journey T.

I think pin means the cap. Get oxygen asap to abort attacks if you don't have it. You can also consider RC seeds and the Vitamin D regimen. All the best

I think important thing is to have them fresh and when you receive them freeze the ones you are not gonna immediately use. Do the float test, drop them in a little mug of water (hand warm) wait a while, you may poke the floating ones. Use the ones that sink, and most people do not use the ones that float. Then grind them into powder in a pepper grinder, if you don't have one you can crush them between 2 spoons. Some folks put them in a cloth and hammer them. But this powder into a liquid you choose, I simply use water. Some folks discard the casings but I use the whole stuff. Let them soak for a about an hour. Stirr and enjoy. Or do not enjoy, some think they taste horrible and I let others tip you out how to improve the taste since I take them as they are only with a bit of water. EDIT: You might want to remove the other thread since this is in the General Board twice

I think CB store would be a great idea. I can supply a little something myself to sell as a continuous donation on my behalf.

This message board and Clusterbusters gave me my life back years ago. It was a big turning point then living with chronic, most severe CH. Now pain free for over 2 years. I am grateful to this community as long as I live and all of you have a place in my Heart. Thank you and have a great year to come !

Thank You SO MUCH for posting these ! I am definitively going to make it some year now that flying can be considered again.

Thank you Salander for making me return to Clusterbusters board. It's been a while. There are all kinds of group on Facebook, that's true. But hanging in there for a while you get the idea what they are about. Cluster Headaches group is great, in my opinion http://www.facebook.com/groups/17789934480/ The Cluster Headache Support Group was the one Chris threw me out as well. I have seen these people come, seen these people go. I find it extremely nasty when we are sharing knowledge of condition as severe as ours and some people want to decide what others may or must know and what not. The censorship, deleting comments and picking "the right (wrong) kind of people" by removing folks on the group is really not the way to go. Well, eventually the truth always wins. Always ! I am also very fortunate to have a great bunch of people in our Cluster Headache Natural Treatments group. I loved the atmosphere, caring, sharing and warmth here in Clusterbusters and have sincerely tried to create something equal. http://www.facebook.com/groups/385160354828914/