MoxieGirl

I always have pretty vivid dreams, granted I'm chronic. But, I do also tend to write down my dreams (although I've fallen out of habit lately), and practice lucid dreaming from time to time. I've never connected dreams or dreaming to clusters except for when I'm having a cluster attack in a dream, then wake up to find it wasn't a dream. I swap from left to right, never knowing which side the next attack will come on. You know how no one is perfectly symmetrical, one side is always slightly larger than the other, or has thicker hair growth, etc. For me, that is my left side. My left side is also more sensitive, and clusters on the left are always more painful than on the right, sometimes several times more painful. My worst most terrifying clusters are always left sided ones. MG

I agree, good awareness report and great to see the cluster buster flash. Has anyone else heard of, or tried, botox for CH? This is the first time I can recall seeing it mentioned. I know it helps some types of migraines, not my type of course, but some. But, I suppose it's legal and thus safe to talk about. MG

I've been living in England nearly 14 years. I celebrated Thanksgiving a little the first year or two, but not since. Tomorrow my best friend and her daughter are cooking a traditional Thanksgiving, basing many of the dishes on what my family cooked while I was growing up. We've spent the week getting recipe's from the States and menu ideas. We are having several people over, including my son. It is going to be a really lovely meal. I can't wait. MG

I don't rock. Don't roll either, but that is another story. I don't even move around that much when I have a cluster attack. I tend to curl up and retreat into my head. There was a time, in the early days, when I couldn't sit still, but then I started developing internal escaping mechanisms. When I'm working, I can't abide music or many distractions. Although sometimes I find writing in a coffee shop or pub enjoyable. To be productive, I need silence. I wouldn't say I'm a perfectionist. Actually, I say I'm an '80%-ist'. I tend to start things with perfectionist goals, get about 80% of the way there and go 'meh, that's close enough.' MG

Awesome! Thanks. I think here are the decisions that need to be made, at least to start with. 1. What - Should we have a 'meet' or a 'conference'? - A meet would be maybe just a meal in a restaurant where we could talk and get to know each other. - A conference is of course a lot bigger. 2. Where? - I live in East Anglia. If we are wanting to pull in people from all over the UK, then London or Birmingham might be a better place - also more expensive than a rural setting. But Cambridge, Milton Keynes, etc. might offer a fairly easy place to get to without costing a ton of cash. - I'd also propose a hotel if we have a conference. 3. Who? - UK people only? - Europeans as well? - Busters only, or all cluster heads? - I know a neurologist I could invite to speak, possible a pain expert. 4. When - I would say this summer. Yes, England does have a summer. MG

Hi Gang, I've been thinking about this idea for awhile, asking myself if I have the time to spear head it, assuming there is enough interest. I've come to the conclusion that it's important enough to make the time for. And the idea is this. Would there be enough interests in having a UK or European based Cluster Head Conference? Or, even start with just a 'cluster head meet'. I for one have never met another cluster head in person, and I know a lot of people in the States say that is one of the most amazing things about the conferences there. So just a chance to have a coffee, or a meal with a fellow sufferer would be great. If that's a hit, then would there be interest in a full-blown conference? Even a 1-day event. Would we want to limit it to just busting friendly people, or open it up to the whole community? There are a lot of forums, facebook sites, etc. to draw people from. If we did a conference, what would we talk about? Could we get some experts in? Would some be willing to travel from the US to contribute? My neurologist is busting friendly, and from what I understand, one of the top headache specialists in the UK outside of London. He might be willing to talk, or at least come and meet people. Lots of questions I know. I'm sorry. It's a rough idea and I'd initially like to see if there is enough interest in just getting together. I consider myself blessed to be able to help others on this site, and there is something deep inside me that would like to take that a step further. MG

Rebounds are annoying, and something to be very much aware of when taking a lot of pain killers for headaches. I was getting them really bad a few years ago. Doc had me switch to Indomethacin for awhile so I could work myself free of anadin. My headaches decreased a lot over the course of a few months.

Hi Gartozi, I have 3 types of primary headaches: Daily Chronic Headaches, Migraines and Clusters. Busting has helped with my migraines and clusters, but hasn't touched my headaches. Ironically, the chronic headaches and clusters started at about the same time, about a week apart. The headaches introduced themselves with a 7 month long, non-stop headache punctuated with migraines and clusters. Now, (nearly 9 years later) I get a headache 4-5 days a week, and they usually only last a few hours. But still, busting does nothing for them. I think many people associate pain with what they describe as a shadow. Sometimes I'll get a headache for an hour or two before an attack that I think is a 'proper shadow'. These are of course indistinguishable from a normal headache. The only way I know they are different is that Anadin doesn't stop the headache and it ends with an almighty cluster. I normally think of a shadow as being a presence, or foreboding in my mind more than a pre or post headache, but I'm not sure many think of it in the same way. I've never heard of a shadow lasting more than a week or two. Hope that helps some.

I'm a rare one in that alcohol isn't a trigger. Thankfully so, 'cause I like my rum. Also, I've learned that if I have a really bad migraine, and if by day 3 or 4 all the meds I throw at it aren't helping, I down 6-9 (more or less) shots of vodka and I wake up the next day feeling refreshed and pain free. Although I haven't had to resort to this 'medicine' very often recently, it seems mushrooms are also quite affective at reducing migraines long-term, it's nice to know I can if I need to and not worry about triggering an attack. MG

Good question.... ponder ponder... I don't think it's affected mine one way or another. I don't believe I get sinus headaches, but was roped into attending a Yoga class this week, and I hate (and I can't use that word strongly enough) the downward dog position. Putting my head upside down like that is not good. Shortly after arriving home I had a KIP 10 attack. So I wouldn't be surprised if sinus issues are closely related to clusters for some people. MG

All fixed now. Thanks.

Hi, A friend is trying to register, and they aren't receiving the automated emails. They tried twice yesterday. Can one of the kind admin folk have a look? Many thanks, MG

Hi gang, Am online chatting to my nephew in the great State of Iowa (whoop whoop!). He is also a migraine sufferer like me, but worse, he's on disability they are so bad. He may even have clusters, not 100% sure yet. But, I was telling him how well busting has helped my migraines, and he's interested in trying some seeds. What are the best sites out there currently to order from? Has anyone found the Vitamin D3 regimen helpful with migraines? Cheers, MG

I was once on the Vitamin D3 regimen, it knocked my clusters on the head in about 3 days, by which time I was seeing significant improvement. But, it also turned my urine to fire, which wasn't as much fun. My neurologist thought it was an interaction between the Vitamin D3 and the high dosage of Topiramate I was on. But, now that I'm not taking either, I've learned that if I just have too much Vitamin D in my system, I pee fire. That is the only hint of an interaction issue I've ever heard of in regards to Vitamins - and I don't think it's a substantial one. So I'd bet you're pretty safe with it. The Vitamin D3 regimen calls for about 10,000 mu of Vitamin D3, if I remember correctly (It has been some time). I can't imagine any pill your doc has given you to take once a week is approaching that. MG

Thank you Fabac. *smiles* Although I didn't have migraines in mind when I started busting, it has had a remarkable effect on them. In fact, here are the numbers from my headache diary. 2010 - 63 migraines 2011 - 42 migraines 2012 - 3 migraines 2013 - 7 migraines 2014 - 7 migraines (thus far) Can you spot the year I started busting? To say mushrooms have given me my life back is no exaggeration. Jan - Mar is historically my worst time of year for headache related pains, and there have been times when I've been off work because of migraines more than I was at work for those three months. When one of my bad migraines puts me in bed for 5-7 days, you can easily see why. Although now, thanks to mushrooms, it's rare a migraine lasts more than 24-48 hours. MG

Hi Darci, Welcome to the forum, and sorry you have to be here. You're already getting some great advice. I'm delighted to hear you were directed here from a FB group. I was on a few for awhile, but all the mods seemed so against busting I gave up and left. There were a few people on the sites posting about how well this stuff works, but you had to be really careful how you broached the topic. Like you, and many others, I think the name 'cluster headaches' does us no favours. I prefer Cluster Attacks. I'm chronic, have been for nearly 8 years now. At my worst, I was getting up to 5 attacks a day every 2-3 days. Busting broke that cycle, and I've since had periods of 23 days attack free. Although my average is about a week, still, that's really amazing. I started busting with RC seeds while I was growing my first harvest of shrooms. They are easy to get, legal to own and very effective. I tend to favour shrooms because I can grow my own. I love the fact that I'm producing my own, very effective, medicine. Best advice I have is to read the Cluster Buster Files section. Lots of really good information there. Also, lots of really helpful people here, so ask questions and don't be a stranger. MG

Fantastic picture.

Hey Timmy, I think of it like we are our own herbalists (for those that grow their own), chemists and doctors when it comes to using mushrooms. As such, it can be helpful to take a fairly scientific approach, and this means document, document, document. I keep a pretty accurate record of all my headaches, so I know what is normal and what is weird, or unusual. This means when I'm busting, I have some idea if it is having an effect or not because the cluster attacks will be different than before. By different I mean, the attacks can be shorter, quicker, sharper, at unusual times of day, etc. Generally any change in the normal is a sign busting is working - or at least doing something. And something is good. We tend to call these clusters, especially within a few days of the bust, slapbacks. Sometimes they are worse than a normal attack, sometimes less painful. It's different for everyone. Eventually though, the slapbacks will go away and so will the normal clusters. This article on 'shutting the door' gives some fantastic information about the time between busting or taking other meds of a similar ilk. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968 And this is another good one to read, about the interactions between busting materials and other meds. https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 Like Fabac said, read, read and read some more. The Clusterbuster Files section is a great resource. When I started busting I had about a month to wait while I weened myself off Topiramate, and I spent that time reading those pages and asking questions. Some rules of thumb I've learned. - start with a small dose and work your way to larger doses until you fill comfortable - have a friend stay with you if you can arrange it - don't expect miracles - keep at it - try everything MG

Let me know when you're looking for accounts from suffers, I write quite a bit about my attacks.

Here's how I scale my headaches. I have a 1-10 pain scale for Headaches, another for Migraines and another for Clusters. The 1 on the Migraine scale starts at about 7 on the Headache, and likewise the 1 on the Cluster starts at about 7 on the Migraine. Notice the Cluster is longer than the other two, which represents the 10 is actually much, much more painful. In fact, I've had clusters go to 14 on my scale as they blew everything I'd ever experienced before out of the water. MG

Yep, I write about my clusters all the time. I actually keep a journal of stories, poetry, prose... etc. Very therapeutic.

*blush* Thank you. I do what I can where I can, and if I can't I just cause trouble. Keeps people on their toes. MG

Well, hey, if you can get homemade chocolate chip cookies out of the deal, well done. I used to say 'life is what you do with your time between cluster attacks'. But thanks to busting, my life doesn't quite revolved around clusters like they once did, and I've managed to carve out a bit more life into my week. MG

In english?

Spiny - That's really interesting, about the not lying prone when sleeping. First I've heard of it. Kocktail - I don't mean to harp on that RC Seeds are the answer, and certainly not the answer for everyone. Just as the D3 regimen doesn't work for everyone, busting doesn't work for everyone. However... If you only tried them once, you're not going to experience long lasting relief. There are also slapbacks to consider, which can make one think they didn't work. Were the attacks you got that first week after taking the seeds different? Were they sharper, shorter or milder? Did they come at a different time of day or night? Did you not experience a post-traumatic-stress attack after the cluster attack? Was your body temperature more regulated, and less all over the place? All of this can indicate the seeds were working, to one extent or another. If there was absolutely no change in the attacks, then that might indicate they don't work for you. Or you had old dried up seeds void of LSA, or you didn't soak them long enough to extract the LSA, etc. I don't mean to bring into question your thoroughness in preparation. All I'm trying to say is that the vast majority of people who tried RC Seeds, Shrooms or LSD see an improvement. But this doesn't come from one bust. It does take persistence. I also want to stress, I don't mean to be pushing busting down your throat. There are a lot of things that can help - as already mentioned by others. MG