MoxieGirl

It is amazing, although amazing in a good sense may not be the right word. Astonishing, staggering, unbelievable; equally good words to describe how one can be feeling perfectly fine one second, and then within the span of just a few seconds, be in eye watering pain from a cluster. And then, for it to stop just as quickly. Perhaps 'Light switch headache' would have been a better name.

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CHFather, excellent advice and thanks for the link to the BOL-148 website. I didn't know that. Hejada, just to comment on how we are all unique, and some things work for some and not others. For me, alcohol is an abortive for my migraines, and doesn't affect my clusters one way or another. But most clusterheads I've spoken to, say alcohol is a sure way to trigger a cluster. Renée

Hi Hejada, I'm not the expert on when to Bust. Am just starting out myself. There are lots of good articles in the ClusterBuster Files section that will help you. And I'm sure others will comment too. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files When I joined the site, I spent a couple days just reading through all the information there. Eagerly reading it I should add. I think I commented somewhere that I was reading this site like a woman, crawling out of a desert and dying of thirst, would guzzle down a glass of water. You see, I have pencilled in a date in my calendar to say good-bye to this world if things don't improve. So busting is my last resort, my life line. I always considered phisocybin an extreme option, even though I've known about it for a year or so. That is, until I started pencilling dates into my calendar. So I say, do what you have to do. If changing doctors helps, then drop your current doctor like hot rock. If stopping smoking helps, then stop as quickly as possible. I've never smoked, so don't know. Decide now you are going to find a way to stop the attacks, then read everything, and find out everything, and talk to everyone. But maybe, that's just me. Renée PS, Yes, I believe it's Queens Park Hospital I'm thinking of. I have it in a comment from someone, and going to talk to my GP about it when I see her this week.

Hi Hejada, Welcome to the group. Sorry you have to be here. I'm also UK based (US by birth). Years ago I managed to find a wonderful GP that listens to me. Then I got clusters, and she still listens to me, and generally goes with what I want to try. Like coming of my Neuro prescribed Topiramate and trying the D3 Regimen that I found out about on CH.com and here. She's 100% behind me. So, there are good doctors out there, and don't put up with a rubbish one. Move to another surgery if you have to. I also have a good Neuro at Addenbrookes, although may see about getting to the specialist centre in London where there is a cluster 'expert', if there is such a thing. I don't think any doctor out there really knows more than the people on this site. RC Seeds are legal to buy in the UK as far as I know. I ordered some online a couple weeks ago, and as soon as my body has detoxed from the Topiramate, I'm going to give Busting a go. Hang in there. Try everything. Get a good doctor. Avoid weed, avoid alcohol. Renée

PMSL Pixie, that made my day. Sorry to hear about the voice though. But, I can just picture the dogs looking at you, waiting for the words to come out, knowing they must, as dogs do. Renée

Thank you for posting and updating this CHFather. It is a wonderful, concise, list of what is needed for the D3 regimen. I would like to, if no one complains very much, add one item to the regimen. Tic Tacs. I have to agree with Brad, the fish burps are disgusting! Especially as I hate fish. Renée

Thanks for the tips on O2 bason. My GP is very supportive, and I'm not sure why we've never discussed it before actually. I've always known it as an option, but just never thought it would help ME. Always thought it was good for 'real cluster sufferers' who have long attacks. Mine are so short I suppose I don't consider them 'as bad as you guys have it, so not real clusters', but I should stop that. 228 attacks so far this year. Long or short, that's pretty damn real. And I'm ready to try anything and everything. I also thought, and think, my neuro is pretty good, but perhaps not the top of cluster experts. He's Dr. Lennox at Addenbrooke's Hosp in Cambridge. He is also a migraine sufferer, which has warmed me to him, because he has tried a lot of the things I've tried, and he can also relate to a lot of the pain I suffer. But, if things don't improve, and busting and O2 etc don't make a huge difference, or mine get longer, then yes, I'll definitely press my GP to go to London. It also isn't beyond my means to go privately, if need be. I think the main thing is that you guys, on this site, have given me a lot of hope. Hope I didn't have a few weeks ago. Will next year be my last? Will it be my last for really bad string of Chronic Clusters? (hopefully yes) But, will it be my last on planet Earth, I don't think so. Not now. And I have people like you, and AO, and Ting, and CHFather, and Jeff, and Tommy, and everyone on this board to thank for that. Right now, ClusterBusters.com is my drug of choice. With zero side effects. The best anti-depressant on the market!

Hi Sherry, Thank you very much for the reply. I haven't done body suspension yet, but I have some body mod friends, and plan on doing it. But not for pain relief, but cause I'm a masochist and want to explore that aspect of pain. I'm also going to be getting a brand soon too. Partly to see how much it hurts compared to a cluster, but I have other reasons too. No, I know I'm not weird. Not for the circle of friends I travel in, and I've never thought me abnormal. Just the world abnormal and narrow minded. I have a passion for pain, and a great hatred of it. But, different kinds of pain. However, my experience on the other cluster sites, and around *cough* 'normal' people, is most people don't get it, and, oh, I'm a bit weird. Oh well. If they knew the places I went to through good pain... My heart goes out to your daughter. Doesn't sound like it's been a nice journey. I want to write a book one day about pain. I read about a bug specialist once who had himself stung and bitten by every but and insect he could, and then described it in detail in a book so that other people could relate it to other insect stings. I want to do that with pan. If, on my pain scale, a cluster is a 10, and kidney stone is a 5, then getting branded is x, suspension hooks is y, child birth is z, back pain is 4, etc. Described in more detail of course. But people reading it can then relate these different pains to things they have experienced, and then, ultimately, related where cluster headaches are. xx Renée

Hi Jeff, Yes, I gave step-by-step up above. But if you have needle phobia, you won't like it. It hurts worse coming out the other side than going in. The needle pierces the skin twice, and then lays flat against the body. I didn't like needles either, years ago. TBH Not sure when I got over it, perhaps in the Air Force. They jab you often enough. Then I learned how needle play really kicks off the endorphins, and I am a bit of an endorphins junky. But, you have to be safe, very safe! Not something you can just buy some needles and do! It's also not something I would really advice if you have other options. I don't know if it would work for many people, and I'm not promoting it as an abortive. It is something weird that I do, that sometimes works. That is all. But, I also do my own body piercings. And people think that is weird. So go figure. Renée

Interesting! Very interesting. I have, on several occasions, had clusters triggered by the solo variation of the above mentioned activity (and yes, women do it too). Love how we are being so coy about this. I used to rank a cluster when driving as the worst possible time to get one. Now it ranks as the second worst. Damn annoying too.

Interesting idea. Although personally I'd op for an iPhone or iPad app. I know there are a few iPhone migraine/headache logs out there, none of which I've found very useful. I have a very detailed spreadsheet that I use to track my sleep patterns, headaches, migraines, clusters, all the meds I take and the alcohol I drink. I'm going to expand it to include Busting dates. The advantage of the spreadsheet is it is expandable, and customisable. The disadvantage I suppose, is it doesn't ping me like the calendar you are thinking of, or an iPhone app would. Also, I'm a chronic sufferer. I've never had clusters so spread out that I need reminding. I think my longest gap has been 6 weeks - 2 months. So, have never put thought into such a calendar. But a good idea, and I can see where it would be useful.

Thanks Michael, My reading hasn't gotten so far to include much on the Bol-148 yet. Have touched on it a bit. The legal variant of LSD if I'm not mistaken. But even with the mild trip effect - so a person might have to take the pill in the evening, or not drive for 6-8 hours, etc. How does that differ from many other meds on the market now with 2 pages of side affects? Also, with proper study in a lab, who's to say the trip effect couldn't be mitigated and dosage better designed and administered? If someone has a migraine, they are likely going to be out of work for a day or two, in my case, 3-5 days. If I could take a pill that would guarentee to stop the migraine in a few hours, even if I had a mild trip for 6 hours, that would be amazing and get me back to work much, much sooner than anything I have now. (OK, haven't tried Bol-148) Renée

I'm sure this has been looked into, so I'm probably teaching my granny to suck eggs, so forgive me if I'm bringing up a point that is already being developed. The only real way to change law, in either the US or UK, is with money. (obviously) But not necessarily by having money, but by demonstrating financial benefit. Trying to pin down a figure on how many work hours are lost to headaches is difficult (still running Google searches), but initial indications is that it runs into the Billions of Dollars! Here are what a couple websites say about it: The World Health Organization: http://www.who.int/mediacentre/factsheets/fs277/en/ And from the migraines.org website: http://www.migraines.org/myth/mythreal.htm I know we are largely focused on Clusters. But I also know psilocybin works on migraines. And what if the law could be changed so that legal studies could be conducted on psilocybin, the result producing a drug that was effective on headaches, migraines AND clusters - and what if that drug got all these people back to work. Now wouldn't that get business men to sit up and take note. And business men of course drive our politicians, who write our laws. Just a thought. Renée

I have become addicted to this YouTube video from the 2006 Secret Policeman's Ball. It may not be fall of your chair with laughter, but it is funny, and it really makes me smile. http://www.youtube.com/watch?feature=player_embedded&v=pqNl6Tc70M0

Hi Red, and welcome. The brain can only really process one pain at a time. So when another, more intense, pain is introduced, it will focus on that pain and forget about the first. I once had a killer migraine, absolutely intense. A 10, and then some, on my 1-10 migraine scale. Then got a cluster in the middle of it, and it drove the migraine away for about 2 hours, even though the cluster only lasted 20 minutes. I like to think the migraine was scared of the cluster. Pain scale wise, I've not found anything that comes close to the pain level of a cluster. Even a kidney stone is only about a 5 on a cluster scale of 10. O2, RC and D3, good advice. Is the route I'm going and I'm chronic with my clusters normally lasting 10 - 20 minutes. Renée

Fantastic article!! Thanks for sharing. Renée

I had found the following article very good, and nice because it is concise and explains the intensity of Clusters. Great to show friends or family to try and get that initial explanation across. http://www.guardian.co.uk/lifeandstyle/2011/oct/17/mapping-the-body-trigeminal-nerve?INTCMP=SRCH However, when I posted it over on CH.com, we all agreed the last 4 words were a bit headline grabbing, and not a single person had EVER heard of this being used as an abortive. LOL For me, it can sometimes be a trigger Renée

I've not heard of Monster except for seeing it mentioned on here. Jolt I think I've seen, and Red Bull they have, but I've not actually tried it for clusters. Funny though, I've seen it mentioned often enough. Ponder.. ponder... ponder... or have I? I think I may have, back in the early days, but worth another go. Although, maybe it wasn't Red Bull. Don't remember, so shall try again. Will also talk to my doc about Oxygen. See if I can get a small tank. Thanks xx

Cool, thanks Ron. :

Thanks Mystina, I also found in one of the FAQs where it mentions it helps migraines. Will pass your comments, and the FAQ's comments onto my friend. I so can't wait to start busting!!

Um.. Yeah, I knew I was being silly even mentioning it on a site like this one. But, I think even for you lot, you will think I'm pretty extreme and back away from me a few paces. The brain can only process one pain source at a time. The old saying, if your finger hurts, smash your toe. There is some truth to that. Although, I'm not that crude. If you pinch a part of your skin, to create a fold. Someplace on the arm, or leg perhaps, where you can get some soft fleshy bit. Then, take a hypodermic needle and push it through the fold, so it goes in one side and out the other. When you release the skin, the needle should lay flat against the body. The technical term for this is 'needle play', although you may not consider it play. It produces a very sharp and intense pain, while releasing a significant amount of endorphins in the brain. It doesn't always work, and it requires that I'm able to be in control of my body, which I'm not always. So it depends on the severity of the cluster. But when it does, it provides an intense enough distraction that the brain forgets the cluster. But, like I say, it may be only because I have short clusters. Someone with very long ones, it may not work. Or, it may generate enough endorphins and would work. I don't know. I've been doing needle play a long time, and have trained my body for it to trigger endorphins. No, you probably don't want to know. I actually tried it a few minutes ago for my third cluster attack of the day, and had moderate success. But, it has been months since I've had the needels out, so am out of practice. It's something that takes practice, skill and a lot of knowing what you are doing. I wouldn't try it without seeing it done and being shown the safety aspects and risks. OK, Yes, I'm now officially a werido.

OMG! People in England often ask me why I left American and moved here. Well, there is one answer. America, the land of the free. Yeah, right! Not much longer if they have their way. I may even be at risk returning for visits. How messed up is that! Renée

But I can't take them until the 16th. That'll give me 5 clear days after I'm off Topiramate and will be sufficiently detoxed. I ordered 4 packs, which is 200+ seeds. So should give me enough to trial for a few weeks. My plan is to start with 35 seeds on the 16th, as my body can be quite sensitive to things sometimes. And at other times, I need to double meds. So it all depends. But, best to start on the side of caution. Thankfully, I'm not working much over Christmas, so will be able to adjust the dose every 5-6 days. I presume I should store them in a dark, cool place?

I suffer with migraines as well as clusters (and daily chronic headaches). But, more to the point of this thread, I have a good friend who REALLY suffers bad with migraines. She has actually been registered disabled because of her migraines. She is taking SO MANY FREAKING pills right now she probably jingles when she walks. And I can imagine many are cancelling each other out. And I know for a fact the side affects she is dealing with are horrific. She, like me, is on Topiramate, to name but one. So, from what I've been gathering, busting works on migraines too? I've told her she needs to visit this site, but would like to give her some more hard evidence. Thanks, Renée