Tony Only

Lately I have been thinking about the homeostasis in human body, the state of "equilibrium" which Les Genser for an example often mentioned. I have always thought that when dealing with clusters, sleep is absolutely The Treatment number one which we often do not remember to mention. Sleep is crucial for maintaining homeostasis. What if cluster headaches lead to homeostatic imbalance due to lack of proper sleep? (One might think what if they are result of a homeostatic imbalance in the first place) What if in different treatments that are effective the treating component is only partly responsive of the healing and the rest of the work is being performed by our own bodies? This might explain the reported record-breaking long stretches of PF after first busting for an example, and how clusters can "get better" after getting rid of lots of medications. And maybe lots of "official" medications also prevent the body ever reaching homeostasis (what your body IS trying to do every second of your life) and may lead the condition to get more severe and even turn chronic. Some of the big puzzles may be rather simple in the end. Any thoughts ?

Welcome aboard TedM. Clusterbusters and people on this message board saved my life. I will let others guide you further but I just need to address the triptan factor (Imitrex, Zomig, many brand names). For me, continuous use of them was the main reason (with steroids + others) for my cycles getting longer and in the end turning from episodic to chronic. They are dangerous, when doctors started to use them for cluster headaches at first they were only allowed to give them on practise in case of severe side effects. In cluster headaches triptans have the power (for some patients) to extend our pain cycles, bring additional attacks and intensify attacks already happening. The biggest danger being turning to chronic. I had a huge improvement when deciding not to use them ever again and many others are telling the same story. Oxygen must work at least as well (it may take some experimenting and practising and developing your gear) as triptans for us to be able to replace triptans with O2. It is scary that triptans are so common prescription for us considering how they are able to evolve our condition into worse. When I got rid of them I went straight to busting and got 3 years of pain free life (from chronic state). Triptan molecule is binded in our serotonin receptors for around 5 days so you need to not to use them for 5 days or preferably longer when using these actually efficient treatments. Nowadays I use Vitamin D regimen and Herbal protocol and busting when needed and my CH is completely in control. Will add the links below. It is entirely possible to get better, without prescription drugs. Wishing you all the best. Vitamin D (anti-inflammatory regimen) http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 Liquorice Root (Herbal protocol) https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

Thank you so much for updating us who have been following eagerly. Good news on Bol & psilo ! Yay !

Hi Luigi, I'm around the same age and have similar story to yours. I had to face death via treatments and medications for cluster headaches and the only option left for me was life via busting. It took me years to get rid of all the medications though. I was on over 1000mg verapamil per day, 4-8 imitrex shots daily, steady cortisone medication + pulse treatments in hospital, 3 different epilepsy meds + several others. I had more hits than ever and had turned chronic few years back. Now I see that on my case it was the official medications that turned me chronic and kept adding the insane pace and severity to my attacks. I was waiting for 2 stimulators to be fitted plus several new medications and current ones dosages to be lifted. I knew those would kill me, did not walk anymore at that point (cortisone), heart failure (verapamil) and what not. So, with the help from people on this board started detoxing from meds. That's one the hardest things I have done in my life. Oxygen made it all possible, can't imagine I could have dealt with that amount of attacks with sheer guts. Just in few months when triptans (Imitrex), cortisone and epilepsy meds were out of the window I had a huge improvement. Roughly after one year I was living again, I almost could have been satisfied with that but had the determination to do the busting and that resulted for 3 whole years completely pain free. Since then the attacks have returned (and I will probably be chronic for the rest of my life thanks to doctors "breaking" my episodic CH) but I am nowhere near the amount and severity I used to have (nowadays I get 1-2 baby hits per month, I call it caressing). Currently I use Vitamin D, Herbal Protocol (will add a link for you below) and busting and will never use a prescription medication for cluster headaches again (unless we will some day get a 1st REAL CH medication that works as well as natural options and has practically zero side effects like they do). Glad you are here. You can change your own life for the better with the amount of knowledge in here and of course; with help from Mother Earth. Welcome ! Herbal Protocol (great treatment option once it comes available when/if official medications have been discontinued): https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol Here are couple other fine articles which I personally like http://newsciencejournalism.com/01/2013/suicide-headaches-how-the-failed-war-on-drugs-is-perpetuating-the-worst-pain-that-humans-experience/ http://www.thedailybeast.com/articles/2014/02/05/longtime-sufferers-of-cluster-headaches-find-relief-in-psychedelics.html

It's completely illegal here in Finland (in Europe). But for me that's not an issue, if there is a magic bullet for my CH am ready to even relocate. It seems that anything which ends up on the illegal list here will stay there no matter should potential medicinal uses be revealed later on. I am eyeing this thread with huge interest for other possible experiences with this. Thanks for posts everyone.

Here in Finland my neurologists prohibited any kind of massaging during cycle. For other reasons stopped listening to them and even going to neurologists appointments back when I was chronic. So went to massage (physiotherapy) anyway dispite of told not to. For me it was a huge relief and help because at chronic state attacks came steadily every few hours and did a carnage on my back, neck and shoulder area and physiotherapy helped me big time. Ever since I have tried to get a word out here how crucial it is to unwind the "chaos" of the body, the muscles and the nerves with physiotherapy / massage to other patients. Yes it may trigger an attack but it will help to cope in the long run. I did a lot of stretching at home with directions from my physioterapist and eventually found yoga which helped me even further. After I finally became PF with psychedelics, whenever the "shadows" or attacks try to return there's always an involvement from neck-shoulder-back area, the muscles and the nerves and for me these are the first signs of trouble on my case. For years I thought it was continuos attacks, the muscle tension and the stress of what's to come to be the only cause of physical problems, now I know at least on my case that they are CH connected in some other way as well.

Just some personal experiences... when I found O2 in the nineties, worked like a charm, even lower flows (was episodic). The more I was medicated 10+ the less impact O2 had on my attacks. When became chronic (thanks meds!) I finally passed the magical 4 hour mark and had hits lasting 6 hours, more intense hell than ever before and my first grim reliefs (loss of consciousness). In my case, these insane hits to which O2 couldn't touch were only possible with loads of triptans (trex) and steroids (cortisone). When those two left the equation O2 started working again. Nowadays I am 100% (prescription) CH medication free and O2 works like a charm.

Magnificient work. I don't have enough words. Closing comments made a guy emotional who has always thought that in the end we are going to save ourselves. I do have a mighty fine hat and I am raising it up on high for doing this and sharing it with us.

After my stomach and intestines blew to hell, the overall condition was treated with several antibiotic courses which in my mind is the absolute worst anyone can do to their intestinal bacteria since it kills the good ones as well as the bad ones, some may reproduce and some never will. In my case it lead to something called clostridium difficile and almost died from that. After that my life was a "horror balance" meaning I had to think about everything I ate or drank and only steady use of supplemental lactic acid bacteria plus several kinds of acidofilus products kept me going at all, but I still had severe downers in my condition, because some of the bacteria that stabilizers everything is now gone for good. After I found kefir I did not hesitate or research it one bit seeing how much good it had actually done to people using it. Nowadays kefir has replaced all my other means to control my stomach issues, it's the "magic bullet" for me. The article I mentioned was the first time I heard that kefir might be an issue, I find it hard to believe though that it could add to acetaldehyde exposure. Most of the acidofilus products sold to us are made like kefir. Kefir just contains more of them and it's as natural as can get. I would simply avoid antibiotics like plague, majority of painkillers (those that create havoc in your stomach) and majority of industrial grade "stomach protectives" as well. I can't answer your question though. I have been wondering the same kind of stuff. Am I "over treating" myself with kefir ? If things some day get really bad, am I already exhausting the most efficient help there is, teaching my body to "too well state"? Dunno. :-[

My use is in direct relation to me smoking regular cigarettes. So I just pay for my stupidity with it. Mainly I smoke e-cigarettes (no acetaldehyde formed or if there is, it's minimal) but if/when I smoke normal cigarettes it's trouble for my CH if I don't balance things with Acetium. Avoiding acetaldehyde when smoking (regulars) it's almost impossible because from smoke it's in the saliva immediately. I take 1 capsule prior to smoking, 1 capsule for 1-4 smokes. On finnish boards the ones who have had great help from Acetaldehyde the minimal dosage that gives results seems to be 1 capsule in the morning, 1 in the evening. And from there up all the way to 10 capsules per day (how severe ones CH is). It seems to help smokers most but also people who have never smoked. In my mind it's all about individual body chemistry plus individual acetaldehyde exposure. It does not help all of us though. Hope this helps. I also want to *raise my hat* for CHfather for the amazing work you do here (and for many others as well). You guys are my heroes. [smiley=tekst-toppie.gif]

Now looking into acetaldehyde, I can relate lot of the stuff in my life having to do with it and clusters. For years the doctors and communities mostly said I'm nuts and imagining things. And in my case, the gut & stomach certainly has a role in my CH. I've lived in a city that has the most poor air quality in here during summers (pollution) and I always draw a direct relation to my clusters. Pollution itself can be an issue (anyone heard of Mexico City where kids have clusters) but via acetaldehyde exposure it actually suffocates us and leaves our brain less oxygen, even if you're in good physical shape. I've lived in a house that had mold long time ago, again direct relation to CH going way worse. Back then I read up about aldehyde toxicity, I think it was this article, then found more information about mold in living areas and acetaldehyde. And again, the doctors thought I was more nuts than before. CCH changed the ballgame completely and at the worst point when I had lost ability to walk (due to cortisone->bone loss) my intestines blew to hell. Was practically living in the toilet and this again drove CH into a new evil gear. And the healthcare offered cortisone to treat this. So for me the detox was double hard, when I managed to deal with CCH (via busting) it took years to get my intestines back together. Monitoring just about everything I put in my mouth, learning ways to cope with stress etc. and for the first time having actual weapons against CH naturally helped. Nowadays I manage my stomach & intestines only with kefir. And browsing that article now it's kind of funny that it could be a potential hazard, acetaldehyde-wise. But it's working for me. I'm just as nuttily convinced as didgens that Big Bad A may be a big piece in the puzzle. Let's hope the finnish research can dig something up, although (I'm cynical you know) it's motivated by making lots of money with their own product.

This is the product I have been using for quite some time, maybe this will help all of you further: http://www.acetium.com/ You can get the site in english (clicking english flag on top right corner) . Ingredients of my Acetium capsules: L-cysteine Eudragit RS-PO calciumhydrogenphosphate hypromellorose titanium dioxide And the brief description: "Microbes in the mouth and pharynx, which result from anacidic stomach or the use of anti-acid medication, will survive and increase in the stomach. The microbes always produce acetaldehyde when you consume sugary foods and beverages or when you consume alcohol. Acetium binds carsonigenic acetaldehyde in your stomach." Smoking can be added to this list as well. For these reasons I have believed for years acetaldehyde being the Mother Trigger for us. It may even have a larger role. And whatever the discussion about Acetium involves at the moment, in no way it was developed for clusters or the manufacturer was not even aware such thing as cluster headaches. Through several reports where people had just noticed by accident it's efficiency in their clusters, the manufacturer took interest to research this. And possibly make a zillion dollars.

No, they didn't want me, I am doing "too well". I think they need people in a cycle who don't have means to control their CH. It has been available here for quite a while already, one can buy it without prescription from a pharmacy. I only use it when I am stupid enough to smoke cigarettes which equals trouble for my CH. E-cigarettes don't form acetaldehyde so mainly use those nowadays.

Acetium has helped me quite a lot, but it's too expensive for me and and almost same results could be achieved getting rid of or staying away from acetaldehyde. It's interesting to follow this one though since it has already seemed to help so many (in Finland).

I find it odd that at least in here (Finland) there seems to be no "alternative" treatments for migraine similar to busting cluster headaches. If treatments for CH work so well for migraines as well, maybe they could be refined somehow to help people even better. For what I know, especially the older migraine patients often are heavily medicated with little relief to actual condition.

And for those detoxing from medications, always the longer time passed from our normal prescription meds the better. 5 days minimum, 50 days great, 500 days awesome.

I think it's around 3 to 6 months stored in normal room temperatures, protected from light and air (air tight). Storing them in freezer can extend this up to 1-2 years.

Interesting post, about Cellfood, this is first for me I've heard of that. Would not have found your post btw if you would not have hinted about it here. It's not long since we didn't have Vitamin D, Herbal Protocol for an example. Always excited to learn about the new stuff. Thanks

Person, who has one of the absolutely most severe cases of chronic cluster headaches that I have ever heard of joined our finnish CH group over a year ago. He had the stimulators fitted and had gone through every possible medication there is, usually several side by side and on such dosages that when he was joining he was losing eyes, hearing, bone structure already gone etc. He was still getting hit at record breaking rate of 4-8 attacks every day. I myself was always hesitant to take part on advices to him, I did not want to think in such way but on back of my mind I thought that there is a line after which there is no return. I had no idea how to help him because the whole detox process seemed impossible. But he started to try out the alternatives, one by one. At this point triptan use finally caught up with him and he had 2 cardiac arrests. Things were looking even worse if that's possible. But he kept trying, discontinuing meds and finally started busting. Here is his post from our Facebook group, translated in english (with his permission) "How could I say this. My brain functions with electricity, in my ears the Incus and Malleus have been replaced with a bone drilled from my skull, my eyes are made of glass, teeth are plastic, I have 2 computers and batteries in my chest, my other hip is titanium. These are the costs for me using too much imigran and verpamil for 19 years and of course the cortisone. How can I ever thank you enough. I have not had this long attack free time for years, or could I carefully start talking about a remission. During June I had 1 attack and now 11 days pain free." Knowing this man's history this is a miracle. Something I would not have believed to actually happen. And the reached state and progress for the better has continued to this day. I wish to thank Clusterbusters again on behalf of our whole community and everyone on this board reading this !

In our finnish group (350+ members) mostly females seem to have additional headache condition (usually some form of migraine) on top of cluster headache. When they have treated their clusters with busting, the other headache types have either disappeared or dramatically decreased as well.

I'd say you're on a path that will eventually lead to success, finding things out. Take some time and read up on Vitamin D. 10 micrograms will not help. I take 10,000 IU (250 micrograms) daily, even when pain free. Vitamin D has been by far the best CH managing option for me, to keep even those shadows for me. When I last was in active cycle I was on double dose and people take even large "loading doses". But that Batch's thread I linked above will tell you everything you need to know and if there still is questions that's the best man to ask from. The idea is to have Vitamin D level in your blood (serum concentration of 25 - Hydroxyvitamin D, also called 25(OH)D) to around 60 to 110 ng/mL (150 to 275 nmol/L). Levels can be measured with simple blood test. Here is a converter you may need at some point. Verapamil, being a calcium channel blocker may interfere to some extent with Vitamin D regimen. But it does not block busting (or even interfere I think) like triptans, steroids etc. so you're good to go. Wishing you the best and success

Nope. 5 days is the official recommendation, even less can work in an emergency, 6 is good. It does not mess up anything if time frame is longer than usual, they key is to wait at least 5 days.

I got the stronge sense of morphed cluster headaches when I read Echo's post for the first time, been through that myself. I was medicated for roughly 20 years each year medications either raised or added. First years: Episodic, around 50 hits annually. Able to function at least some level during attacks, except the most severe ones, overal attack duration from 30mins to 1 hours, 1½ hours max. Cycles lasted for weeks, most attacks during sleep. 10 years later: Episodic, around 300-500 hits annually. Unable to function at any level during attacks, the pain volume much greater, duration from 1 hour to 3 hours (max). Cycles lasted for months, daily and nighttime hits equally. 20 years later: Chronic , around 1500 hits annually. Attack severity reached maximum that I have ever experienced, during hits unable to even move my limbs, lying on the floor until losing consciousness. Overall attack duration 2-4 hours, 5 hours maximum. Hits had lost all the regular schedule they had when CH began, I could be hit anytime, anyhow. My morphed CH could not have been possible without ridicilously dangerous continuous prescription medication. Ever since got rid off them, first experienced the longest pain free stretch I have ever had (with busting) and now CH is very, very slowly, day by day, going back to it's "original form". I'm thinking it could be something else but could very well be just medication morphed clusters.

I think it's also important to look in the past, how we got from there to here. To my eyes, the absolutely worst things from those you mentioned capable of altering our condition worse are verapamil, steroids, lithium and topiramate. After years (for decades for some) of these pretty much never results in anything good. Melatonin is good though it does not help us all since not all of us have funked up melatonin production. If it was me, I would detox from the meds asap, that alone may bring improvement though slowly. To support getting better wonderful option would be Vitamin D regimen and if able to reach medication free state also Liquorice root protocol. Busting certainly would be more efficient, healthier and wiser option over the meds you have been on looking at it from any perspective. But like pointed out, set and setting is important and when in cycle we are rarely happy and calm state of mind. Then again, treatment doses are rather low, and when working from small doses slowly upwards I would be amazed if one faces a "bad trip". Some prefer RC seeds as their busting material, since all the effects are far less than with mushrooms. But when seeds are not "enough", usually severe chronics etc. then the only option is mushrooms. I can't recall a single patient with "Morphing and worsening of symptoms" by the way who has not been on prescriptive medication. I think it's our dear meds that do that in the long run. Take care of your body, choose treatments that fortify it and not work against it. My best regards to you.

Yes, highly recommended: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404