Tony Only

I think the amounts of MM mentioned in the beginning of this thread are quite large (3-4 grams). And you mentioned sometimes not having any effects. Is your MM coming from the same source all the time ? I would guess the busting material is faulty. Or if it is not, used by someone else for an example, my second guess would be something blocking. It does not have to be a prescriptive medication, it can be something else. Your CH certainly sounds very resistant so an MRI should be taken (sorry if this was already suggested) and maybe consult a neurologist if that is possible. He/she most likely will not agree with instructions given here. For some changing tryptamines does the trick when one stops working (momentarily) that has been effective in the past. I think LSA (RC seeds, HBWR seeds) is at least as good as psilocybin in MM. I would try that. Then there's LSD like you mentioned but if it's scary put a weight on that feeling as well. Then there is 5-MeO-DALT which did the trick for many of us but it's hard to find outside US. Have you thought about other options than busting, besides pharmaceuticals ? Adjusting you diet ? Anti-inflammatory regimen (Vitamin D + others) ? Herbal Protocol (Liquorice Root + Skull Cap) ? How has your CH reacted to taurine (energy drinks) or have you tried any ?

Just stumbled into this thread, anyone at any point setting anything up in Europe, you can contact me. I think some finnish patients would definitively participate and I can pass on the word about it. We have had meet and greets for patients only so far in Finland. Things will hopefully change big time in future years to more conference like gatherings including doctors and medical field as well.

Hey, where are the PICTURES ? They are everything to me, to be able to see all you fine folks and conferences in pictures afterwards since I am only able to be there in spirit

To add to the above: On this particular cycle I had little to no success on breaking the cycle with tryptamines so I had not used them in a while when going at it with energy drinks, I don't know does this play some kind of part with my great response. I also had no chance to obtain (switching) tryptamines I believed might have worked better than what I had (psilocybin & LSA). I got the idea since I have a habit of listening to shadows, do I need to abort with O2 or not, and sipping energy drinks. I started to notice they might prevent hits completely on very small amounts. When I decided to try it out, I also made very sure not to use any vitamin B supplements (had been using strong vitamin B's every now and then) since I think these vitamins play a role in why energy drinks help (not just the taurine). I was also remembering some posts where people felt energy drinks don't work as well if you're using a lot of vitamin B. So all my vitamin B intake came from these drinks. Preventing with energy drinks worked so well for me that I was able pretty soon to only use half a drink, later even less. But I'm a lazy guy. So when I had a whole day ahead of me full of things to do and even if I hadn't been shadowing or expecting a hit I noticed myself drinking these as kind of extra shelter to last the whole day. The more I used them (on hectic weeks) the more I was worried they might lose their potential like everything in CH. But they didn't, they didn't fail me once. When the cycle was over I quit drinking them. Since then there has been a short activation lasting a week or so (during "sun storm" in Finland) and again they came to my rescue. I'm pessimistic as far as treatments and my personal case goes so I think they might not work this well every year. Then I plan on doing the switching, between liquorice root tincture and energy drinks.

I've never heard of successfully preventing a hit with O2, many have tried. I think the mechanisms of action are very different on O2 and energy drinks. Vasoconstriction probably being connective mechanism on both though.

For those who stumble into this thread later on, just opening their eyes and getting that first cup of coffee http://youtu.be/-bYAQ-ZZtEU

I'm not participating much on english CH discussions at various sites any more and nowadays sometimes I run into trouble when I do (not here since ya all are so sensible!). I have followed our finnish CH group almost daily for around 4 years and there are some consistent observations made in this group that repeat on different patients year after year. Usually I don't take these observations outside the group (to english CH sites) especially when they are something "new" since my fan does not need any more s**t it's got plenty. This came up yesterday on Facebook so I thought I'd post it here as well. It was about steroids' ability to "create" conditions for CH to come over. Some people can kickstart a cycle completely unexpected with having a steroid course for some other ailment than clusters. It's not even usual but there are too many cases for me to think it's a risk for some. I have no idea would some kind of steroid response, or lack of it, play some role in this. But it's fairly logical IMO, we're dealing with a stress hormone here. That has a chance to rock the boat on some of us. One other thing I just have to mention here is preventative busting. The official recommendation is to prevent based on everyone's individual schedule. But it looks like that for some us doing a preventative busting just for schedule sake in a situation where there has not been even a slightest sign of a weak shadow for a long time might rock the boat as well. And at worse case, kickstart a cycle. Would be very interesting to hear observations of others about these, and other things as well.

CH lump. Physio might be good for those on who neck shoulder area plays a role in their cycles. I think in lighter weight cases of CH preventing neck shoulder problems might even affect our condition in some positive way. But it's a consequence not a cause.

I'll have to add my list when I get around to it. How can you people possible remember everything ? I couldn't. Might be due to damage done by some of them though. At the moment I will just leave you with this image - something funny from our finnish site

In my last cycle last year I used energy drinks almost only as preventatives. I felt kind of stupid why I had not tried that ever before. I got the idea to try them out from migraine sites where lots of people aim to prevent their migraines with coffee. The other reason why I went at it was that my usual preventative, liquorice root tincture, was not responding well so I started thinking maybe dilation was a bigger issue for this particular cycle and for me. I would suggest just about anyone who can tolerate energy drinks (especially if they already work on hits but also if they don't) to try them as preventative as well for at least a week - if hits come like clockwork it should show it's response easily. But they took me a few days to reach the optimum prevention. I still don't understand how they worked so well though, I got shelter for hours. It can't be just taurine? I can't recommend topiramate for clusters, for anyone, but that's just me. Lots of great news Suzz ! EDIT: At least on me when I used energy drinks as preventative, I didn't need to use the whole drink, or the same amount used to abort. For me 1/3 - 1/2 of the abort amount worked as a preventative, fine tuning that based on the strength of the shadows.

Don't wait another hour to get the oxygen, don't wait for the next doctor's visit. Get it know, asap, every triptan (imitrex) used to abort is too much in your situation and will either keep it bad or make it worse. When you start aborting hits with oxygen you can take your next step. It may take a while for oxygen to build up efficiency, in other words when your body keeps on detoxing from triptans, oxygen will work better and better. Oxybar might be fun but won't help in clusters. CH attack also has little to nothing to do with saturation how oxybar's sell their idea. To treat an attack you need high-flow oxygen like CHfather advised. Meaning a lot fo oxygen delivered into your body, fast. It's measured as litres per minute (lpm). Usually in clusters we need 15 lpm or more. Sufficient oxygen treatment at home will change your life.

Welders oxygen or any kind of DIY O2 is not possible here so this is huge. So far if you are not able to get a prescription for it it has meant no O2.

Humble Thank You for your kind words Bejeeber but it's not just me, over the years we've built a great community in here and I couldn't be able to do anything without help from others as well. Together we are strong

Like everywhere, it has been and still is often way too difficult to get a prescription for oxygen treatment in Finland. Sounds silly, but often the underlying reason is that doctors don't know "how" to write this prescription, what they should fill in the text field. They don't want to reveal this so they simply have not written a prescription. We have been working to improve this in recent years by sharing our "oxygen prescription for dummies" documents with example text fields for prescriptions and even images of oxygen prescriptions available for doctors. I just received an e-mail today, now it is possible to get the oxygen treatment here even without prescription. Especially in long term use it's still wise to get a prescription for oxygen though, since by having it, finnish social insurance institution (Kela) will pay part (40%) of the costs. Now every cluster patient in here can finally get oxygen if financial situation allows (it's high priced). Maybe this will happen, or is already happening, in other countries as well.

Suzz: treating attacks with oxygen is just as effective as treating them with injections. I would never ever advice to use both, when you get O2 start detoxing from injections. O2 will be more efficient alone and does not have risks for keeping the pain cycle on like injections do. Way too often people who have been on injections (or other form of triptans) for a long time try oxygen and give it up too fast (if triptans are "weakening" it's effectiveness). It's a project but in the end you are able to abort at least as efficiently if not more so than with injections. And how much better you will feel will make all the difference in the world.

What a wonderful advice from CHfather, oxygen certainly is the best tool for you to start climbing from that evil hole. If your injectable is a triptan (Imitrex or similar) that may also be the cause or at least contributing factor for your 3 year suffering. While triptans still continue to work as an abortative, they have a nasty tendency of keeping the pain cycle ongoing, even causing additional attacks and/or intensifying the ones already happening. Lots of people contribute changing from episodic to chronic to continuous triptan use. And the O2 (oxygen) usually starts to work more efficiently when detoxing from triptans. Wishing you all the best.

Right now feeling hopeful for year 2016. I think I have finally been able to start gathering up some pieces of my life that 20 years of uncontrolled clusters led to and the havoc that all did. I'm hopeful to start understanding and solving other related issues, mainly PTSD and depression. It's strange understanding there are these big parts of my life that I have not admitted so far or even begun to understand. Why I am hopeful and being able to do this is because I am still alive. And for being alive I thank Clusterbusters and this wonderful community. THANK YOU everyone.

Happy holidays and wonderful new year to everyone reading the forums !

Here is an additional file that can be shared to ayurvedic practitioner or doctor, since cluster headache is also a rare condition in Ayurveda and not all are familiar with it. This file contains treatments that can also be carried out at home by patients as self-treatments. Yoga-RatnÄkara-Å›irośūla-cikitsa.pdf

Here it is. Ayurveda is an ancient indian medical science and health care tradition. We here in Finland were blessed to find an Ayurvedic practitioner Ossi Viljakainen who took interest in cluster headaches 2 years ago and now has compiled this work for us. Ayurveda does not see clusters as incurable. Also the first writings about cluster headaches in Ayurveda are dated back to 1500 BC (there may be even older ones). Any and all research would be so valuable and to find patients to participate in this. Ossi did this work and put this together for us. If there would be weaker response I would imagine that might be among medication resistant patients who have turned out that way due to heavy long term over use of prescription medications since ancient Ayurveda treatments naturally could not take attention of prescription drugs. EDIT: File was too big for upload as an attachment so I have placed it here: http://tonyonly.pp.fi/ch/AYURVEDIC-MEDICINE-for-Cluster-Headache.pdf

I will deliver some additional information here when I get it. My knowledge about this subject is so minimal. EDIT: A member of this forum sent me this link: http://www.ck-wissen.de/ckwiki/index.php?title=Bericht_Nalana You can translate the page for an example with https://translate.google.com/ 2nd EDIT: I sent the link to finnish Ayurveda practitioner, he said this is only the nasya treatment. This can be taken lot further. He wrote to me "If diet + one herb + nasya can do this, imagine what 21-28 days of ayurvedic treatment could achieve?"

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