Tony Only

First of all, I have to say as far as I know, when treating illnesses, Ayurvedic approach does not aim to treatment, it aims to curing the condition. I had to make this post when I saw people making fun about Ayurveda in Facebook Cluster Headaches group. I think a great place for more serious discussion about this would be here in Clusterbusters forums. As a personal opinion, I think Ayurveda would have a lot to offer for CH patients and I have seen some of this potential myself. This is something we would seriously need to look into. I have heard wiser people than me say that Ayurveda might have a chance to "cure" CH, although I am doubtful, I am not ruling that one out. Here in Finland we were blessed to have a lecture put together for us by 2 Auyrvedic practitioners in finnish CH convention. Clusters were (at first) new to them and naturally Ayurveda new to us. It turned out that Ayurvedic medicine has known clusters pretty much longer than western medicine, which is not surprising at all (after all, our "system" and knowledge is based on these ancient ones). When practitioners started to look for clusters in old Ayurvedic texts (dated back thousands of years) guess what herb they have used to treat CH? Yup, liquorice root. Ayurveda is much about changing your life, getting to know your body type (and yourself), adjusting your diet - many of the the things that will definitively link to anyone's CHs. There is a possibility to arrange a study about this. Anytime. I can also deliver more information about this if there is interest to learn more. I truly wish some people would get into this. For me, Ayurveda is probably the healthiest way I have ever heard of with what anyone could treat their clusters. I simply have to repeat; it's possible to arrange a study to see how Ayurveda actually could help in cluster headaches. How valuable would that be to the whole CH community? Based on what I know about clusters and the little I know about Ayurveda, I can't even imagine.

Thanks CHfather, I hope you are doing well too. I'll try to write a bit in the general board. Been away for too long.

It's the detox, being off triptans. We have (finnish) patient group in Facebook (around 400 members at the moment) that is hidden and for those CH patients only that either use busting as their main treatment or plan to do so. This is one of the most obvious things noticed in our group (and keep in mind, majority have no experience in busting when they arrive) for few years now. We have not observed the other though, O2 being somehow more efficient due to busting. It is so obvious to us that we tend to promise the hits will be much easier after detoxing from triptans. It's also troublesome, outside the hidden group, since an average CH patient demands some kind of research to back this up. This is also one of the key pieces of such information (and there are several) that needs to be available to the patients. This is the problem (for us), that seems to grow as time passes; we have data from a patient community (such as this) that is consistent, year after year. This data is not accepted even for an evaluation in the "official" channels. And it is not allowed to share publicly without research or "official" backing up.

I don't even know what this is about but sometimes we need a break to clear our heads ... .. that said, sharing personal/private messages anywhere is not ok ... in my books The kind of "protection" administrators provide for us members needs to be highly appreciated and can be a tough job. The bigger the crowd and attention CB gets the harder that gets. So my both thumbs up for everyone running the board and contributing

BOL-148 (2-bromo-lsd) is already familiar to so many healthcare folks so let's just hope there might be a some kind of fast forward with it. In case you have not heard about 5-MeO-DALT you might like to read up on that, it's an interesting and very promising new option, now being introduced to doctors and researchers I think. http://figshare.com/articles/Treatment_of_Cluster_Headache_Symptoms_using_Synthetic_Tryptamine_N_N_Diallyl_5_Methoxytryptamine/1119697

It's so much about the teacher; my 1st yoga teacher walked me inside. She showed me how yoga is more of a state of mind, anything you do in practice is secondary, peace of mind is essential. Now for me it's more meditation - a trip, really ! All the other teachers I have seen after her pale in comparison, for some it's just gymnastic exercises. I often think nowadays if only I would've had this world when struggling with CH

This brick wall analog is pretty perfect to me and I feel more or less exactly the same most of the times. I've had this dream to do volunteer work for animals somewhere far, far away - this for me would (most probably) mean the lack of trusty old O2 plus the other preventative/abortive treatments (busting) would be unavailable. During last months I have tried how would I cope with my current CH completely "naturally" without O2 and busting. It has not been easy and have not been doing well. I know what I want but at the moment it seems impossible to get there. Also had to reply on the Yoga subject. I can't give up on Yoga, no matter what. On my CH I have noticed it's not the increased body temperature that's the major issue (although it plays a role) but it's the increased temperature in my head that gets the ball rolling. I changed Yoga groups to a one where the space the lesson is has much lower average temp than others plus I wear such clothes that it's almost chilling when we start - yes, even Yoga can be very physical even when the movements performed are not very physical, it just gets the whole body going. It's a new skill for me which I probably will always be learning, how not to panic and try to (literally) keep calm using breathing and limiting what one does (what's bad/good for me) during these sessions. Still occasionally there's kind of a panic when that hypo starts to boil. I give up on that lesson, go to abort and participate the next one again. We should have clusterhead Yoga classes ! Thank you for this wonderful post.

Id' say this link is good, it has been online around 8 years You can find other parts via that. In US good supplier for Liquorice Root & Skullcap is Mountain Rose Herbs (I think), Les Genser recommended them. https://www.mountainroseherbs.com/

I can do the finnish one.

Heh, Thanks Fabac, *cheers* for your banana drink ! And PF wishes & *hugs* your way

Even if the assumption is dead wrong, in my case, everything that helps me to get more O2, then max out on "use efficacy" of O2 has always had positive impact on my clusters. Everything from breathing techniques to physical exercise. Certainly caught my attention

Well I was just joking around in Facebook when someone (I think it was b.g.) referred to the importance of learning about your treatments before actually doing them as "do you eat a banana without peeling it first"... then I asked from Dr. Google. Hmm. Dr. Google says banana peels have a LOT of good B vitamins plus magnesium for us clusterheads, but then again, rich in serotonin sounds like trouble. C'mon, do I really have to get me a blender and test this mother out 8-) http://www.dailymail.co.uk/health/article-1325741/Eating-skin-fruit-vegetables-combat-cancer.html http://www.livestrong.com/article/457082-what-are-the-benefits-of-eating-banana-peels/

http://healthwyze.org/index.php/component/content/article/478-naturally-eliminating-cluster-headaches-and-how-the-establishment-is-blocking-cures.html Both Chlorophyll supplements and Budwig protocol are news to me. Old timers probably know better ?

I have to give big thumbs up for Tranceplants. We have around 25-30 patients (in Finland) using their product as main treatment regularly, some have for years already and the quality has not once let us down.

I contacted him on Facebook asking for him to come here. He's had rough time overall and is using internet in library but I'm sure he will drop by and message you back

I would suggest you to make an account to clusterheadaches.com and ask about this from Batch (creator of Vitamin D regimen) directly. We are blessed for a chance to be able to do that http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

If I understood the question correctly, I would not recommend just "getting something" that gives hallucinogenic effect hoping it will help CH. Stick with ones that patients have discovered, which have science backing up their mechanisms of action, LSA (RC seeds or HBWR seeds) probably the easiest (and most legal) first option. Psilocybin when you have a way to acquire it. The hallucinogenic part probably has little to do with us getting relief from hallucinogens since most use them (especially when preventing) on sub-hallucinogenic doses. Wishing you a pain free journey

I have to add that when I was chronic the longest PF stretch I could achieve which official treatments was 4 days (IV steroids). Like you stated everything worked for some time but when chronic there was nothing. My first busting resulted in over 3 years of 100% pain free life. Although CH came back, it's under control now and so far busting has never failed me *knocking on wood*

I will let others advice you, just wanted to say welcome and glad you found us. I would imagine there's lots of fellow headbangers near your area here.

UK patient I was trying to connect with others now has a profile here HelpmeiamfromUK

Male CH sufferer in UK Birmingham contacted me and is looking for other patients in UK who could help him with busting. He is in a bad place right now and is having trouble registering here in the message board. I have his e-mail so if you are in United Kingdom and would be kind enough to help, PM me and I will give his e-mail.

I think we need something physical in the birth of CH pie chart as well, be it just a gene or for some reason funked up hypothalamus but in last few years I have started to think more and more that the emotional/mental part may have such a role that it's almost ridiculous how overlooked it is. Or little discussed. But totally loving this thread as well !

...or for other reasons hypothalamus just happens to be the affected part ("in the line of fire") and since it is our internal clock the pain manifestations happen scheduled by it. I am recalling Genser suggested something like this when describing the "inside out" and "outside in" triggering of our attacks in episodics vs. chronics I have thought of this too. If there would be a chance for this kind of treatment to affect anyone's CH I think it might have to be really deep, similar to what we are doing right now, fast-forward-psychotherapy with psychedelics. But it would be super interesting. Questionnaire to those fortunate old timers whose CH has disappeared at certain age would be interesting as well, some interviews in Gabor Maté kind of way to let the patients speak and maybe find something in their stories.

Oh my, 3rd reply in a row, maybe I need to cut down on the coffee. Anyhow, I was just a reader on different boards for years, trying to figure out why my CH was going worse. At this time I started to form an opinion that people who used no medication seemed to stay the same from year to year and from decade to decade and people who used prescription medication in growing amounts (bigger dosages or added meds, not replaced) seemed to go worse in a relatively short amount of time. Even with all the information I had gathered, I could not detox completely myself and quite sadly witnessed everything I knew to come true. My 1st cycle was only 2 weeks and all the years I was not medicated it was always weeks, never more than 4 weeks. With prescription medication cycles started to grow immediately plus the severity of the hits grew; always when I thought there's no freakin' way it could get any worse it did. I believe it always can if doped enough. Just before turning chronic my cycle lasted 8 months (it had been 6+ months for years). When I was chronic I was more medicated than ever. Having more hits than ever (1hr of Pf yet shadows were present 24/7 was very, very rare luxury), harder hits than ever and even the classics (oxygen for an example) became ineffective. With enough meds in my system I could have hits for weeks which O2 did not even start to touch. To cut a long story short, I had to be pushed to the point where there was either a slot 6 ft under or life and started the long, long road of detox (months for most meds, years for others) and was finally able to bust. I was almost ready to be satisfied with how things were after detox; hit frequency had come way down, O2 was working again, dozens of side effects fading and disappearing. But since had made up my mind about busting went ahead with it and received over 3 years of 100% PF life. Looking back now, that makes no sense, I had never had a 3 year break even when starting as episodic. Now that CH has returned, during this year for an example, when I get hit at night I don't always bother to get up. I wait. If I need to get up, low flow O2 will deal with everything in few minutes. I even aborted with Liquorice Root only for long time. For me, this is an astonishing evolution from attacks which always lasted for hours during which time I was completely incapacitated (kips 9-10) to something that bothers a bit. When I reached PF I became much more active in patient communities. I have spent and will spend majority of my time in our finnish groups and never have I been more sure about the effect of prescriptives on evolution of cluster headaches than I am now. Of course there are wildcards, people who differ from majority but my cautious estimate would be something like 90% are affected in a bad way by the prescriptives. I am overjoyed seeing people have even more wonderful results than me just in the detox period. It's just a scary thought for most. We have countless stories of how the evolution have been able to change vice versa, from going worse to getting better. Shorter to non existent cycles. And I am of course talking about all the other treatments than the official, prescription medication treatments. Out of all the members in our groups, I do not know a single one who has had success with pharmaceuticals (without a cost). I'm talking about long periods of time about everything in this post, 10+ years. I'd love to have the wit or even connections to start taking all these information up from people and getting something out of it all. Maybe some day (we have some projects thought up). The only thing I can imagine that can be distorting the information available for me in recent years is the nature of our group, we are very solution centered and (can't think of a better word) filled with hope. So people who embrace their CH as their fate or feel there is nothing in this earth that can help them or at least will never try, would not come into our groups or if they do, they don't stick around. This evolution "ability" or potential triggered by certain pharmaceuticals is in my opinion one of the most over-looked aspects of clusters. I love all and any discussion about this and sorry for this long preachy rant, last cup of coffee I swear. Be well, ya'll

If I imagine these "cavemen" and a sudden lifethreatening event, I'm thinking they reacted 10 out of 10 times - to everything. Those who didn't, died. What if we get lifethreatening events or anything that gets the same juices flowing in our brain, but we don't react at least in a way "nature intended" but we hide our reactions, because that's how it goes in more modern society. Our command center for fight or flight, the hypothalamus, gets all f**ked up in the aftermath and in the very end of the loop all the warning signs morphed into wrong or mixed signals manifest themselves as severe head attacks.