MoxieGirl

I love your approach Spiny, and views. I sometimes describe them as the tsunami of the headache world, being that a 'headache' is the ripple created when a 5 year old jumps in a puddle of water, and a migraine is a standard ocean wave, then a cluster would be a tsunami. They hit with no warning, and wipe out everything in their path.

Still waiting to hear from th O2 people. I did mention it to my GP again the other week, and she's aid she would nudge them and see what was taking so long. So, on order.

I will admit, this thread has given me pause to think about how I view and think about my clusters. There was a time when I very much hated them, and feared them. Which is unusual for me because I don't fear pain. But clusters terrified me. Until shrooms came into my life, and I experienced a peace. A calming. I no longer fear and hate them as I once did. But, I think I still consider it a demon, if purely in how it hides and attacks and I see it as a shadow demon in my mind. My thought processes are very graphic, and I interpret most things as images. So giving my cluster a shape and personality is very natural for me. In regards to writing and fiction, I'm getting ready to publish my novel this year. Www.katera-assassin.co.uk. And although none of the characters have CH, I did use my expereinces of them in a scene where and of the minor characters is being punished.

les genser - I appreciate what you are saying when you don't call it a demon or beast, and I know what you mean about having to accept it, and it is part of us. But even in your French story of Beauty and the Beast, the beast WAS A BEAST, until he learned to love and accept himself, and be loved by Beauty. Perhaps not all of us are far enough along to love and accept the beast, so we still see it as one. I know clusters are a part of me. I know my brain makes them happen, whether that be a defect, or just the way I am. And for me, that makes me hate them more. If I had a broken leg, I could point to the bone sticking out of my flesh and say 'there, that is why I hurt'. What I hate about clusters is that I can't see it. Can't get a blood test for it. Can't point a finger at the cause OTHER than my own brain generating the pain for some unknown reason. And the way the pain is created, and the shadow that lurks behind the peaceful tree I planted in my mind, to me it is a demon. CHFather - very interesting stuff. I'd love to have my aura read. I'm not sure where my spirituality lies, if I'm being honest. I was a Bible-bashing Christian once, but no longer have faith in religions or believe in a God. But there is also a lot I've seen and experienced I can't really explain. I do feel there is more. I suppose a part of me believes, and trusts a lot, in Karma. I don't believe 'everything happens for a reason'. I believe things happen, life happens, and it is up to us to turn it into something good, to find reason in it, or not. But also, I go through times where things just fall into place for me, with little or no effort on my part. In fact, if during these times I try and direct my life down another path, it will be fiercely blocked. All very interesting. Renée

So, back in July when I last saw my neuro, he suggested I stop taking my 2mg a day maintenance dose of oestrogen to see if that would make my frequent migraines go away. It apparently does in genetic woman on HRT who get migraines. So, I did. Now, 6 months on and I had my hormone levels checked to see if my body is producing enough on its own or not. My hormone levels are now at the low end of OK for a woman. My Testosterone is 0.2 nnol, and my oestrogen is less than 19 pnol. In May 2009, the last time I had them checked, my T was at 1.4 nnol and my oestrogen was at 77 pnol!!!!! A MASSIVE HUGE DROP if you ask me. Still in acceptable levels to keep me alive, but not great. My GP thinks my body was converting some of the oestrogen I was taking into T, which makes sense and accounts for the numbers. So, my next logical thought was: Did my clusters turn really bad since coming off the oestrogen? And, looking back over my records, I can't say they got much worse really. They started getting REALLY bad last April, and I didn't come off the oestrogen until July. Also, can't say that my migraines have gotten remarkably better. So, I'm going back onto the pill, and in three months or so, going to get my levels checked again. I'm also thinking of not busting for the next few months, if I can survive it, to see if increasing my hormones alone has an impact on my clusters. I'm not taking D3, or ANYTHING else, so changing my hormones will be the only thing happening. Renée

It's fantastic that Professor Nutt's research is getting around the world and making news!

I have a good friend who is very into reincarnation. I'm not 100% sure where I stand on the subject, but many things in my life encourage me to believe in it. Anyway, here's what he says on the subject. When someone is young (spiritually) and new to this world, they pick easy lives to live - rich people, kings, queens, princesses, people in power, etc. But once you have been around for a few lives, or a few hundred, that gets boring. So you look for a more challenging life. You might choose to be born with a birth defect, or have heartache in your life, etc. Because of this approach, he values people who are living a hard life, because they must have an older, wiser spirit than rich people and the movie stars - who at least in popular eyes have it easy. He thinks I have a fairly old spirit as I was born into the wrong body, which was very difficult, and now as a result of aligning my body with my gender, I have cluster headaches. There are other things in my life that point to hardship that I won't go into. But, with this in mind, clusters in this life probably doesn't mean you were a bad person in your last life, but rather that you are mature enough to have chosen a challenging path to walk this time. Sometimes, thinking about that helps me find a positive spin to it all, and reminds me that we aren't here for all that long to begin with. Next time around, I might try and be a bar maid on a quiet island in the Pacific. A life with no pain, no freaking snow, and no care in the world. Renée

I think for every 'rule' I've read that defines a cluster headache, I either know someone who has clusters and defies that rule, or I myself defy it. Alcohol is a trigger - not for me, and one or two others I know. Clusters make you agitated, and you can't sit still. Not always, sometimes it does, but quit often I like to not move a muscle so I can focus on managing the pain. I read one place that clusters always happen on the same side of the face, and the opposite nose and eye waters. Not true for me, clusters hit both sides of my face, sometimes the back of my neck, etc. And the same side of the cluster waters. Clusters are suppose to last 15 minutes - 3 hours. Some of mine are 1-2 minutes, 5 minutes, 10 minutes... etc. I think there are about 2 rules most of us can agree on that are true for clusters. 1. They are unique, to one degree or another for everyone, with the distinction being extreme pain. 2. As soon as you figure out the rules of your clusters, the demon changes the rules. Renée

I told my GP during my visit on Monday. She asked what I was taking now that I'm off Topiramate, and if I was taking the D3 instead. I asked her to not put any of this into my notes, and she lifted her hands away from the keyboard in a gesture that said 'no problem'. Then I explained about the psilocybin and LSA. Her advice, be careful. But, this is also the doctor that was fine with me drinking several shots of vodka to stop a migraine. Also, she has a friend with clusters, so appreciates how bad they really are perhaps in a way not many doctors do.

Hi, I was in your same position just 3 months ago. Last November I was in the process of putting a date in my calendar when I was going to end it all, if things didn't get any better. I've had clusters for 5 years, and they've been badly chronic for over a year now. Like you, I've tried nearly everything, and it either didn't work, wasn't tolerated by my body, or eventually stopped working. I'd known about this board for a long time, but always considered it a last resort. And in November, I realised I was at that point. I started by joining this forum, and reading all the files in the ClusterBuster Files section, over and over. Also, started reading the Share Your Busting Stories threads. They started to give me hope. I then ordered a bunch of RC Seeds, and someone in the forum I had made friends with, sent me a couple doses of mushrooms. I had to come off the Topiramate I was on at the time, and that was a rough journey. But once off it in December, I started 'busting'. Since then I've taken mushrooms 2 times, and seeds 7 times. There is also a Vitamin D3 regimen that is helping A LOT of people, but I'm not on it at the moment. Long story. So all I'm doing are seeds and shrooms, about a week apart. And the change has been dramatic! That shadow you get sometimes, the presence of the demon floating around in your mind, just waiting to pounce, went away with the first dose I took. Gone, dead. Also, I noticed right away that when I do get attacked, I don't have that post traumatic stress attack afterwards, that would leave me curled up in a ball and crying for a half hour. I haven't done that since December. I've also had an 11 day Cluster Free Gap last month that was amazing! I normally get hit every day to every other day, with 3 days being considered a long gap. Also now when I do get hit, the hits aren't nearly as strong as they used to be. It sometimes feels like one is starting up, then runs out of fuel before it can really get going, and just fades away. I won't lie to you, chronic clusters are harder to bust than episodic, but not impossible. You've come to the right place. Hang in there, Renée

Awesome! Hope I can see the news show, and love the article.

So, I'd set up an Alert in Google to find an articles on Magic Mushrooms, and it returned this recent article in The Guardian. http://www.guardian.co.uk/science/2012/feb/06/magic-mushrooms-law-war-drugs It was written by Amanda Feilding, who is the director of the Beckley Foundation, an organisation trying to change the law on drugs. Their website is here: http://www.beckleyfoundation.org/ I was scrolling through the main page, and found a Links section at the bottom, where Clusters Busters is listed under research. Cool! I am planning on contacting them to see if there are any plans in the UK to look at psilocybin helping cluster headaches. Current studies are looking at its use to help depression. Renée

Great use of Alerts Kyle, and yeah, always kind of weird when something like that is close to home. To set up Alerts, go to Google's webpage. At the top, click on the More drop down menu, and go all the way down to Even More >>. This will open a page with the Alerts tool at the top. I've set up alerts for 'psilocybin', 'magic mushrooms' and 'cluster headache'.

Hi Ron, 6. I found every few months I had to keep increasing the dose of Topiramate to keep it working, until I had exceeded the max recommended dose, and then it stopped altogether. And to be honest, I haven't noticed an increase of attacks since coming off of it, although (until busting) they were a bit stronger than when I was taking it. There was a time, I must admit, I was happy to take it more for the appetite suppression benefits than what it was doing for my clusters. 7. A friend had sent me 2 doses worth of mushrooms, and I've had 6 doses of seeds, between 30 and 50 seeds each dose. I think the shrooms worked better for me, but I haven't had enough yet to prove it. 15 Dec 11, 1.1 grams mushroom 22 Dec 11, 30 seeds 1 Jan 12, 1.2 grams mushroom 10 Jan 12, 50 seeds 15 Jan 12, 40 seeds 25 Jan 12, 50 seeds 2 Feb 12, 46 seeds 8 Feb 12, 46 seeds Each time I've taken a dose, the trip affects seem less and less noticeable. I haven't busted long enough to draw any final conclusions yet. Shrooms seem to help more with the shadows and post traumatic crying then does the seeds, but the seeds help some. It sometimes seems my attacks are slightly less frequent, and not quite as strong as before busting, but the stats on my spreadsheet don't support this. I'm still getting hit often, and just as hard. BUT, I think without the constant shadows in between, it doesn't seem so hard to bear. When mine started, 5 years ago, I would get hit for a week or two, then have a 2-3 week break. Although saying that, I was probably chronic my first year, in 2007, although my records don't go back that far. I had a 7 month long headache, and frequent migraines in 2007, plus a high frequency of bad clusters. It was my 'Year of Pain'. By 2010 I was having PF gaps of up to 23 days, and many gaps ranging from 12-16 days. Dec 2010 is probably when I really turned chronic, with my longest gap being 11 days since then, but averaged out for the year, my PF gap in 2011 was 3 days. My average gap so far for 2012 is 4 days, the longest being 11 days. By definition, I think, to be chronic you not only have to have less than 2 weeks PF gaps, but also it has to last for more than a year. My last gap 14 days or longer ended on 6 Dec 2010, when a cluster ended a 20 day gap. Renée

1. Age 42 2. Became chronic @ age 46 3. Have been chronic for 1 yr and a bit 4. Yes, my hits vary a lot, from 1-10, averaging a 6. 5. No, not a continuous background headache, but I do get a headache 5 days out of 7, and frequent migraines. 6. Topiramate was helpful for awhile, and the only one from the list of preventatives that I could tolerate. Was taking it for about 18 months. 7. Am now using seeds and shrooms. Nothing else. 8. How frequent are your chronic attacks? (Maybe?) Mine started out about every 3rd day, increasing to evey other day as the year went on. Renée

When the censors say a film 'contains sexual references', well, this film takes that to a whole new level. Also, you will see a different side to Natalie Portman, who is one of my favourite actresses.

My plwasure Ricardo. If you must know, the sword was from a dead unicorn, and its horn was the handle, then the rest of the sword came from its spine. Was it was removed from the skeleton, the blade broke free of the bones around it. Makes more sense in the movie.

In response to that: http://westvalleyview.com/Main.asp?SectionID=2&SubSectionID=1&ArticleID=41549 This was in my local newspaper yesterday Interesting article. But I think it was mentioned, that the trick is to not draw attention to yourself. If you plan on growing vast quantities for sale, then that really isn't keeping your head down and someone is bound to find out. But, if you are just growing a small amount for personal use, how are people going to know unless you tell them?

Like Hipshot , I rarely visit the other board now too, now that I've discovered the amazing power of seeds and shrooms. I suppose I just feel safer talking about my experiences here. I progressed from taking what the doctors gave me, to following the threads on CH.com, which mostly seem to be about the D3 regimen, to this forum. And I wonder if a lot of people go about it that way. For me, shrooms and seeds were a last resort because of their legality, or lack there of. I didn't like the idea of taking shrooms. Wish I'd tried them first though. I'm just glad there is a site where we can talk and learn about these options. Renée

Very interesting article. I really enjoyed all the other names for CH. "erythroprosopalgia of Bing" is probably my favourite. I actually wonder, a little, if I have chronic PH instead of CH. Mine are typically quite short, often under 15 minutes, sometimes only a minute or two, and I can have 1-5 a day. I was originally, and clearly, diagnosed with CH, but I wonder if things have shifted a bit. OUCH says PH is easily treated with indomethacin, which I happen to have. And they say if indomethacin doesn't work, than it is a cluster headache and not PH. Hmmm, interesting. Also, by the definition given, I am definitely chronic. 1 year plus with an average 3 day gap between attacks, and a max of 11 days.

Sounds like a good plan me thinks, Ting. Find the solution with the least impact, and save the big guns for when they are needed. I noticed in someone else's post, they mentioned they were left handed. Which got me wondering if there are any common threads with sufferers. Probably not. Knowing the beast, it is probably too random for that. I'm right handed for example. But, as long as we are talking surveys, I wonder if some questions along the following might be of interest? Do you also have migraines? Do you also have frequent headaches or daily chronic headaches? Do you also have ice pick headaches (primary stabbing headaches)? If you've had your testosterone levels checked, are they low for your gender? How old were you when you had your first attack? Are they worse, or strike more, in the winter, summer, spring or autumn (fall)? If episodic, how frequently are your cluster periods? If chronic, how frequent are your attacks? Do you find exercise helps? What is your most effective abortive? What is your most effective preventive? How long do your clusters generally last? 15-30 minutes 30 minutes - 1 hour 1-2 hours 2-3 hours When do you get hit the most often? Daytime Evening When you're asleep Weekends Those are just some off-the-top-of-my-head questions. Perhaps there are more, or some of those could be removed. Just an idea. Renée

Hey Tingeling, I'm the same with meds. After I have taken one for awhile, my body adapts and it stops working. Then I either have to increase the dose, or switch to something else. But, what I found with Zomig, once it stopped working, I didn't take it for about 9 months to a year. Then tried it again, and it worked great. So, when my migraines were bad, I had a selection of 2 triptans and an over-the-counter migraine pill, that between them one would usually work. And by rotating them, I didn't seem to adapt as quickly. Slightly scary thought that busting could one day go the same route. This is the sort of information we need for chronics - and episodics too, if it is the same for them. Renée

Fantastic idea! I'm chronic, it would be nice to know if there are things different with the treatment specific to chronics vs. episodics. I know it is harder for us to bust, but once they chronic cycle IS busted, what is the time frame of taking maintenance doses? Is it the same for eposidics? Those sorts of questions. Renée

Hi Devilhead, My heart goes out to you and your husband. The best place to start reading is the ClusterBuster Files section. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files When I joined the site, and read and re-read those files ten times probably. They have a LOT of really good information, and will answer most of your questions. There are also links there to sites where you can buy the supplies you need. There is a specific file on seeds, number 5 in the list. Also good to read is Playing Well Together (6) and Shutting the Door (7). (They are all good to read, but you might want to start there) I have a diary in the Share you Busting Stories section that you may also find useful, although it is getting a bit long now. I've chronicled my experiences with shrooms and seeds, and what I've learned along the way. It's the Renee'e Demon Busting Journal. In short though, some people take as many as 100-150 seeds. The trick being to find the smallest amount that is effective on the clusters, with the smallest trip affects. I normally take around 50, but I started with 30 and worked my way up. If you are unsure about how it is going to affect you, I'd recommend starting with 30-50. My last dose, I took 46, and I don't think that was enough. I'm thinking of increasing to 60 next time. There is a 5 day wait period between doses, which is explained better than I can do it in the Shutting the Door file. I've busted a total of 7 times now, 2 with shrooms and 5 times with seeds. I've experienced an 11 day cluster free gap in that time, and that is the longest gap I've had in a year. Also the clusters I do get, are generally shorter and not as strong. One tip I don't think is in the Seeds file. When you get your seeds, put them (whole) in a glass of water. Push them all to the bottom, and see which ones float. The floaters are duds, and don't have any LSA in them. So toss them in the bin, and only use the seeds that sink. It is similar to the 'floating an egg' trick to see if it is fresh or not. Dry off the seeds, count how many you want to take, crush, soak in a small amount of water (I use a shot glass) for 90 minutes or so with a squirt of lemon juice. Then filter, and drink. For filtering, I use a tea strainer. It will taste TERRIBLE, so have a glass of water on stand by to wash it down with. Also, works better on an empty stomach, so don't eat for a couple of hours before hand or 90 minutes after. Tripping varies between people. The first time I took seeds, I felt a little light headed, got REALLY sleepy for an hour or so, and very, very mild nausea. Each time I've taken them, the trip affects have gotten less and less. Many people take them right before bed, and then just go to sleep. All that said, I'm a fairly newbie to the site and these meds. There are better experts here than I. This has just been my experience. Good luck, and hang in there. Renée

Thanks. My brain works weird like that.