MoxieGirl

Amazingly well said, as always, Ricardo. Thank you for the accurate information. MG

Hi Will, From what I've read on this forum, 'Iowa ditch weed' (as we called it growing up) doesn't normally work in a good way on clusters. I don't remember the technial reason, but it either enlarges the blood vessels when we want to shrink them, or it shrinks them when we want to enlarge them. One day I will remember which way around it is. But, from what I've seen, for most people it makes them worse. That said, most cluster heads can't touch alcohol, but I don't have a problem with it. In fact, it is an abortive for migraines for me. So, if it works, awesome! I've tried different strains of mushroom, and I haven't noticed a difference in them impacting clusters. But I have noticed I have fewer other reactions to various strains. I've finally found one that doesn't make my body itch for 20 minutes after taking it, that sort of thing. My advice, is if you have access to different strains, try different ones, see what works. MG

Don't think so, but I know I can turn into a proper B*tch when I'm being hit hard.

On another board I posted if anyone else suffers with tinnitus and clusters, and thought I'd present the same question here. If you have clusters, do you also have tinnitus? Did they start at the same time? Is your tinnitus worse just before, during or after an attack? I do (obviously), and the tinnitus started the same week my clusters did, so am wondering if there is an association. MG

Good luck to you both. xx MG

Hi, Taking into account that we are all different, and react differently even to well measured and often prescribed drugs, saying what dose will or won't work for you is a pretty large stab in the dark. But, here have been my experiences with different doses. I've taken everything from .6 gram up to 2.4 gram, and like you, am not a huge fan of the trip. I found 2.4 gram too much. Wasn't an enjoyable trip, and nearly put me off mushrooms. But, perhaps I didn't have my set and setting quite right, was in the wrong mood, or who knows what. Also maybe 2.4 g wasn't enough for a GOOD trip. Maybe 3 would have pushed me over the edge (in a good way) and I would have enjoyed it. Most of my dosages have been in the 1 - 1.2 g range, and I find this quite nice. The trip is OK, get some nice colours when I close my eyes, but nothing extreme. I've recently split a 1.2 g dose with a friend, so essentially had .6 grams. I found this trip level REALLY EXCELLENT, was just like having a few drinks. Lightened the mood, no light headedness, was just a nice evening. How effective against clusters were these various doses? That is hard for me to say. I've been chronic for over 6 years, and after taking mushrooms and seeds off and on for over a year, I still get frequent clusters. I'm next expecting shrooms to be the miracle cure for me in the short term. But, all the various dosages I've tried have seemed to lesson the subsequent attacks. As far as I can tell, there has been no medical difference between .6g and 2.4g. Good luck MG

Jeff, Yep, I like to use that analogy too. My clusters come on about as quickly as brain freeze too. One moment I'm fine, the next in agony, just like brain freeze. But they last longer and are 10 times more painful.

In another post, CHFather mentioned about a really cold Red Bull, or similar drink helping abort an attack. That thought sends shivers down my spine, as cold is one of my triggers. In fact, if I get brain freeze from eating ice cream too fast, it'll trigger a cluster. I adore KFC's Crush'ems, but they invariably trigger a cluster because they are SO cold. So, this got me thinking (scary, I know). There is a theory that brain freeze is the result of your mouth getting cold, and sending that signal up the Trigeminal nerve to your eye, where you feel the pain. Clusters also trigger the Trigeminal nerve, and is why we often feel the worst pain in the eye, the same place as brain freeze. So I wonder what drinking something cold, triggering brain freeze when we are in the throws of an attack does? Is there a connection, and is that why drinking something cold helps some people? Ponder Ponder. MG

Excellent advice from CHFather. I would add my favourite saying about Clusters. 'No two people's clusters are exactly alike, and just as soon as you figure out what works for yours, it changes the rules.' What worked last time won't always work this time. So like CHFather said, hit it with everything you can until one works. The 5 day gap between taking mushrooms is pretty important, otherwise your just wasting good mushroom. You can also mix it up a bit by alternating with Rivea Corymbosa seeds. I find alternating between the two works pretty well, as the body quickly adapts to one form or the other. Find your triggers. Eliminate different things from your diet to see if anything is triggering them or making them worse, but you probably know that already. I'm fine with most things that trigger clusters in others, like MSG and alcohol. But that seems to be pretty rare. What I can't cope with is sudden cold, so CHFather's suggestion of a really cold drink terrifies me. And while you're trying to kill time, waiting for when you can take that next dose of shrooms, read up on the ClusterBuster Files section. Lots of good information in there that will help. Good luck MG

This is really interesting. I wonder how the numbers compare to the general populace. http://www.firstwordpharma.com/node/1107032?tsid=28&region_id=4

I think trying to explain what a cluster attack is like, is like trying to explain the colour red to a person born blind. All they know, all they can perceive, is black. Colour, like pain, must be must be experienced in order for us to have a shared understanding of it. Not completely ignoring all I said above, I have also often said that if I had a special power, it would be the ability to touch someone and give them a 1 minute cluster attack. MG

I think it is important to remember that the title of this blog works both ways. I have daily chronic headaches, giving me a headache 5 days out of 7. My longest running, single headache, lasted 7 months. Plus, I have had migraines all my life, a bad one will put me in bed for 5 days. On top of all that, I also have cluster attacks, getting 200 or more a year for the last 6.5 years. I post about my headaches a lot on my Facebook page, and all my close friends 'get it'. They know the kind of pain I suffer with, so much so that if one has a headache and complains about it, they'll turn to me and say, 'well, it's not as bad as yours.' But that doesn't stop me from giving them sympathy, understanding and care. When my best friend has a migraine, I don't go to her and say, 'well, it's no where near as bad as a cluster, so get out of bed'. To her, a migraine is Hell. And as a migraine sufferer, they are Hell! We all have our Hells, and don't go trying to belittle someone else's Hell because your's is worse. Hell is Hell. When you read the description of my headaches, where you instantly comparing them to yours? Were you thinking, 'That MG, she has it rough, but at least she doesn't get hit every night, 3 times a night, with hour long clusters.' And you would be right, I don't. In fact, I am always comparing my clusters with those of other people on this board, and I often think I don't have it bad in comparison. But that doesn't mean I live in less Hell. I generally take the tack of understanding and sympathy when someone complains about their headache or migraine. I might end the discussion with, 'Yes, I get it. I have these rare things called cluster attacks that are beyond belief.' Then I might follow up with one of the two statements below, if they are open to more information. If not, just leave it there. "Someone once posted on one of my threads saying they had dislocated their knee playing football, and didn't notice it for 3 days because the pain was so trivial compared to a cluster." "Have you ever had a muscle cramp in your leg? Try having one in your eye for an hour. " If I want to sound medical, and avoid the 'headache' in cluster headache, I might say I have unilateral acute cephalalgia attacking the trigeminal nerve. That will quite often get their attention. But I rarely call them cluster headaches anyway, much preferring cluster attack. Just remember, if they don't have clusters, they won't 'get it'. So don't get frustrated by them not getting it. MG

Hi, The link below isn't about clusters, but is a great information video on psilocybin, and is helping to get the word out that this powerful drug needs to be studied more. http://myscienceacademy.org/2013/05/30/hallucinogens-as-medicine/

I'm a member of 'Cluster Headache Support Group' on FaceBook. There are currently 822 members, and it is growing fast. Like this forum, it has members from all around the world. I don't want to post the entire report above, but it would be great if someone involved with HOH could write a short-ish summary about what Headache on the Hill is, what it is doing, and how to get involved. I could then post that on the group and perhaps get some more people involved. At the very least, this might give 822 people some hope in the future. Here's the link to the FB group, if anyone wants to join. https://www.facebook.com/groups/CHSupport/ There is also a twitter account, NOT associated with the FB page, but also with a lot of followers. @Clusterheads and people often post using the tag #clusterheadache Posting a link to a summary article would also be seen by a lot of people. MG

Oh, yes. I also wanted to ask about the cluster stories booklet. Would LOVE to do some writing for volume 2. )) Would also be happy to help edit, if help is needed. MG

Thank you for posting this to the FaceBook page. I am a member of another cluster headache group on FaceBook, and reposted the information and directions on how to find us here. Between FaceBook and Twitter, I come across so many people who are suffering and have no hope. Hope has just entered the room. Thank you Bob and Kim, and everyone, for all your hard work. MG

She is 'busting' again this weekend, and hoping for a cumulative improvement over time. Shall keep everyone posted.

By far the best report I've read on cluster headaches anywhere. http://health.nytimes.com/health/guides/disease/cluster-headaches/print.html

So, gave my best friend a small dose of shrooms last weekend for her depression. To play things safe, we went with about .6 grams of dried mushrooms. Her trip was very enjoyable, which I think was her biggest concern. She's well aware of the dangers of a bad trip, and was quit worried about it. So we are all very happy that part of the experiment went well. Over the course of the following few days, her mood has showed a considerable improvement. She isn't hiding from the world in her room any longer, and has started communicating with friends again. She's even started chatting with a few perspective dates - which is awesome! She told me yesterday that none of the medicines doctors have ever given her for depression has helped as much as one small dose of shrooms. MG

Here is my CH Tattoo. An apple with thorns you ask? Well, I'm glad you did. About 6 months or so after I was diagnosed, a good friend of mine, who happens to have been trained by American Indians to be a Shaman, took me on a spirit walk to try and identify the cause of my headaches. I soon found myself on a lovely little hill, inside a picket wooden fence area that had beautiful flowers and trees. I was standing next to a great big apple tree. I love apple trees, and have many fond memories of climbing the one in my back garden as a kid. Then, an oval shape 'thing' entered the edge of my vision, blocking out the sun and quickly growing these massive long black spikes. Instantly, everything around me started growing spikes; the flowers, the plants, the tree and the apples. Soon, spiky apples started falling all around me, and I had to run from the tree in terror. I ended the spirit walk then and there. Much later I was able to put 2 and 2 together. The shape of the 'thing' that entered my vision was the same shape as the hormone patches I had been using in the lead up to getting clusters and the 7 month headache. That in itself, is a long story. But ever since, an apple, something I love, with long black sharp spikes has been my symbol for headaches and cluster headaches. I need to get the tattoo touched up a bit, and gone over by a better tattoo artist. But hopefully you get the idea. MG

Hi Legion, Without this site, and busting, I'd be dead right now, to be honest. So, I agree with you, fantastic resource (and really friendly helpful people). I but a lot with seeds, and wrote a post on my method. I found it works really well. In the ClusterBusters File section, in the bottom half. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289 You may find it useful. Hang in there, there is hope. MG

Used to happen to me a lot. Granted, before busting I got one or two migraines a month that would last 3-5 days. So the likely hood of getting a cluster at the same time was high. Once, I had one of those REALLY bad migraines. One where I had to stay in bed, lights off, curtains drawn, no sound or movement, etc. etc. Then, got a horrendous cluster attack that lasted 30 minutes. It was SO bad, it completely shut down the migraine for 2 hours. It gave me 2 wonderful, peaceful hours where I was able to get up and cook something, have a shower, etc. Then the migraine returned in full force. So yeah, nothing unusual there. MG

Hi, My best friend is struggling with depressions. She doesn't want to go back on doctor prescribed emotion killer drugs, but is struggling to beat it herself. I want to give her a small dose of shrooms, as I know there have been some very promising reports on how they help with depression. My question is about the dosage. I normally take about 1.2 grams of dried shrooms when I bust. As she is really concerned about the trip, I am thinking of giving her 1/2 that. I once gave her Zomig for a migraine, and her body really did not like it. So I would rather err on the side of caution, but I also would like to see her experience an improvement. What do you think? MG

Very interesting topic. Nearly every time I complain of a headache, migraine or cluster, my best friend instantly blames a change in the weather. As I live in England, a change in the weather is a constant. In fact, it is the only place I've been where the phrase 'don't like the weather, just wait 5 minutes' is true to life. However, I get SO MANY headaches, migraines and clusters, I've given up trying to isolate a cause, especially one so difficult to pin down as weather fronts. Yes, weather changes very well may be a trigger for me. But in my case, just sleeping, or getting thirsty or too hungry or even just breathing can be a trigger. About the only thing I can reliably say isn't a trigger, is alcohol. (thank god) MG

Hi Jubal, To answer a couple of your questions. The extreme anxiety or panic you get before and/or after an attack is Post Traumatic Stress. If you can find a civilian (as opposed to military) Post Traumatic Stress test on-line, you'll see that cluster sufferers score really high on it. Before I started taking mushrooms and seeds, I would have a 20-30 minute panic/stress attack after the every cluster. But, that stopped instantly after my first dose of mushrooms (what we call busting). I now get them occasionally, about 3 or 4 times a year. Shadows, I think, are slightly different person to person. I describe a shadow as a presence, an echo, or a fog or smoke in my mind. It is connected to clusters, but for me isn't painful. It is like the demon (my nickname for my clusters) is a shadow, and he's hiding behind a tree, waiting to pounce. Sometimes shadows are a prelude to an attack, but sometimes not. They feel like a heavy foreboding at times. That said, I think that when other people describe shadows, they involve pain. I do sometimes get a bad headache an 1-3 hours before a cluster, and other times 1-3 hours after a cluster. Suppose this could be called a shadow. But, I get headaches 5 days out of 7 anyway, so hard to tell them apart. Need to know anything else, just ask. That's what we're here for. Also, the ClusterBuster Files section is well worth reading. MG