Tony Only

Is there any information is PTSD somehow "connected" to cluster headaches ? Like someone wrote on another thread, some clusterheads probably have something that might be described as PTSD after surviving severe CH era. But I am thinking more in a way are there same mechanisms for cluster headache to be born? I finally got around reading about it and the Wikipedia page alone rings all kinds of bells. Any articles, theories, anything, I would be most interested.

If they work well for you, always keep some at home in handy, and freeze them as soon as they arrive. I always have 500+ in my freezer. If you don't have a freezer then store them in cool, dark place.

That's the right stuff. Wishing you great success with them.

That's the one.

Hi there Norm. Most folks use RC seeds because of their efficiency and they are easier to dosage than some. Check out "MoxieGirl's Seed Recipe" that should answer your questions. At the moment I know personally dozens of people who successfully use seeds, mostly as preventative but cycles can be terminated with them as well. I'd say 95% of people I know are not getting any "tripping" using CH treatment doses. High recommendations from me at least. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289 The link you provided seems to have the right kind. I have no experience of that company myself, I use Tranceplants which seems to be a lot cheaper as well. I have been satisfied for their products.

I'm so in

Wishing you all the best spiny, I hope your PF life returns asap. On my last hospital visits I always had my own O2 with me although it was not allowed (it was impossible to get high flow from hospital gear). Plus my own treatments not allowed either (vitamins, herbs). Also my laptop from which I consulted other sufferers + researchers worldwide. I took the lectures in other ear and out the other ear.

My reply is something that you can probably dismiss right away but I thought I'd share since this brought it to my mind. I know 3 people who have had paralysis in their face and at least 2 of them have had trigeminal symptoms either prior or during it. All of them related the cause in some way to "air breeze", 2 were passengers in a car with a window open and 3rd bicycling. I think all were fairly healthy and it was a surprise getting it. I think it is this in english: http://en.wikipedia.org/wiki/Bell%27s_palsy I am not saying your daughter has it, I just thought that maybe some of the mechanisms might "ring a bell" or maybe it's not anything like this at all. We are complex beings, one of these cases is the man who services my car and though his paralysis healed, he always says he has not been well for 1 day since, that this "started it" and he avoids all kind of air breeze on his face anyway he can.

If I try to relate my history to this, my absolute worst was when turned chronic. I know some say it's easier because you don't have to worry about cycles anymore. For me it was vice versa, because earlier I could do a little something, when chronic pretty much nothing - my chronic state was made with drugs so it was extremely severe, not a many hours in a day I could function. What amplified the "no hope" state was the medical field telling me that now that you've turned chronic, there is absolutely no hope anymore. Nothing in the world can ever stop these attacks, only make them maybe easier to withstand. This was the message for 2 years from every specialist and neurologist. But, when I had first heard of Clusterbusters and busting I spent days just reading everything. And I had this belief right from the start (equals hope) that there are at least options, chances, maybe they will not work (and my care did not want to hear about them) for me but there is STUFF on planet earth, not all hope is lost. So in some way maybe I was/am naive and it helped me ? I did not even question anything because the message was so clear and "common sense". I have been pain free now for over 3 years with alternative treatments. From chronic state. It's funny in a grim way that the folks who said it can not be done do not want to hear it out how it was done. So if one traces back what has happened since, at the moment, in my life, in other patients lives around me (and I only mean the Good stuff), all can be traced back to this board and this community and that is something massively positive. One may not always see the impact CB has had for so many but it is always there, ever growing. Awesome ! [smiley=vrolijk_26.gif]

First of all, Thank You each and everyone for your responses. I think I had some kind of good reply in my mind when I first read them and as usual, I should've typed it right away because now my brain is shooting blanks. I think I PM'd to someone that "even if everyone around the patient can see the possibility and believe in a possibility of pain free life, it does not help if the patient does not believe in it". In Mika's case, he has had hard time believing there could be anything that could be done for him anymore but now it's the stories of other patients that have given him hope. It's just the conventional road that has ran him so "far". He has O2 in use multiple times a day and (Thank God) it is still effective abortative. He has now been on D3 regimen for a few days but currently is getting even more attacks. We are hoping this phase will pass and at the latest blood tests will show what has happened with his D3 levels. Next plan is to do busting if D3 does not help, probably RC seeds first and mushies second. I absolutely think the patient is the key, the hope, the support, "seeing the possibility". I even think you can to some extent alter your brain chemistry via your own thoughts. In this case we may need a hammer to help though. I think people who start out chronic are wild cards where most of the stuff does not seem to apply as in others. I have to say it once more - Thank You - without patient communities this effort would not have happened ! Will keep you posted.

CHfather, THANK YOU so much. I will pass this information forward and you already brought new wisdom that I did not know of. I am just looking for other opinions since I feel I am too "alone" trying to help just by myself. And I have the same very careful approach, this guy has been through a grinder and any moves in any direction must be careful and with real knowledge what one is doing. D3 is the first thing and this is actually Day 1 on it. I met this man personally last weekend and this got the whole thing started. I know he has been though hell and still is there but he was also ready for detox time if it seems busting is what is needed to be done. The amount of gut and will power I sensed from him was amazing (and what could he have achieved if at some point given something else than the "wrong stuff"). He is a perfect example how treatment can "build up" and not in a good way. Liquorice Root was not on my top list since I think more and more should be concentrated on the whole holistic approach, that treatment is treating us as whole and not focusing on our faulty hypos. I think understanding the herbal protocol and "embracing" it at this point seems too much plus he needs bigger "tools". One more big Thank You. This is exactly why I made this post.

Actually there was, in the 2nd paragraph. He has O2 and does not go anywhere without it. Sorry if it was a bit hidden there.

I will do my best to translate the reply I got from this man's wife from finnish to english: "I try to remember the past before he went chronic, there was a little time as episodic but not any very clear cycle or pause in it, attacks came about a year before it turned completely chronic. We can notice the difference between good and bad times though, when in good phase there is only 2 attacks per day and in a bad phase (which happens about twice a year and lasts around 6 weeks) attacks come all the time every 2 hours, day and night. Cortisone can somehow keep it little at bay. For years he has been using it 40mg/day ja in the bad times he raises it to 80mg/day and even up to 100mg/day in the very bad times...earlier he has been getting it directly in the vein in 1 gram amounts during 3 days, but that only kept attacks from coming for 1 day. Now there is so much problems from the cortisone that it is necessary to try to run it down, slowly and it has been bad all the time, the goal is to get to 10mg/day because they think that body's own cortisol production has stopped or it will take time for it to start again...he has not been able to drop it again like adviced and sometimes lifts it because he can not take any longer... The current medications; Prednison 20 mg, Verpamil 200 mg 1x2, Neurontin 900 mg 1x2, Relert 40 mg for the attacks and medical oxygen (O2) and the other medications are for the side effects for the cluster medications: for an example Risodion for osteoporosis, Burana 800mg for aches, Nexium 40 mg for his stomach which is completely wrecked... I have been offering Vitamin D for him 50µg (2000IU) 3 tablets per day and Kalsidos-D which has 20µg in it plus calcium. He has not been taking these regularly because he complains about the amount of pills and that his stomach can not take it... Once we had a doctor made us a list about what vitamins one should take but my husband did not follow this through because his stomach could not take it. (Omega3, D-calcium, Vitamin E and protein drink... something like this and total was like 15 pills a day) From different medications we have tried (I don't know how well you know medications but i can look up the different brand names) Propral, Deprakine (too much side effects), Lithium, Neurontin, some other strong epilepsy medication equal to Neurontin but Neurontin was better, Lyrica, Tramal, Fentanyl patch, Morphine patch, cortisone all the time, Disperin 1g, Panacod, Imigran (nasal spray, tablets, injections helped but the side effects were awful), none of the pain killers have never helped. There has been different operations, ganglia stellatum injection twice (anaesthesia through the neck), botulin injections, neurostimulator in the hypothalamus but not in use, another one in neck nerve but neither of the stimulators helped and this one is out of battery and we are waiting for the removal time, doctors offered us new more efficient stimulator...Maxillary sinuses have been broadaned by surgery, his nose has been straightened, received radio frequency treatment to the trigeminal nerve... would there be something else I can not remember... naturally we have tried cupping, acupuncture, "spirit healer" some kind of shaman ) All kind of massages etc. Now my head is all empty, I will e-mail you more if I remember something important, this was not all the medications but these are the ones I could remember. This started around 1996 and in 1999 cortisone was started and has been used ever since with extremely bad results concerning his body (he is 6cm shorter, 20kg lighter, muscles gone, whole man is like paper, what his intestines look like I do not even want to know, stomach is shot to hell that's for sure) He still has pretty bad lifehabits (stress, eats poorly, always working what he can and when he is not he is thinking what he should do, very pessimistic about everything and we have also had a lot of bad luck in many places), smokes almost 2 packs a day, he would have a beer if he could but for years now it has not been possible. This was a long and confusing message.... So, this is the man we could really use help with. Any advices, and I do mean any, would be appreciated. My first reaction was that something has been keeping this up for 16 years. It would be very sad if it is the cortisone used for treatment. He is ready to try any alternative treatment there is. I think we need to figure out what is the reasonable thing to do. I have already suggested to start the Vitamin D regimen since his levels were 39 nmol/L (european measurement). Thank you for taking the time to read. MOD: So he has had DBS and Occipital stimulators, neither one helped. Occipital can probably be removed, DBS is too risky.

This is a desperate but at the same time optimistic cry for help. We had a CH patient gathering here in Finland last weekend. We met a patient who has been severely chronic for the last 16 years. He has 2 stimulators and (in my opinion) terrible medication history. He expressed that he is ready to try the alternative treatments. The reason I am writing here is because although I know a thing or two about the alternatives his condition is so severe that we will probably have a lot of questions along the way. The first thing to try is the Vitamin D regimen. His vitamin D levels are awfully low. I am waiting for some basic information about the current medication and the CH history and will post here when I get them. When I met him, I really, really felt for the guy and the first thing that came in to my mind where to ask for help is Clusterbusters.

So sad news. R.I.P. Andrew Sewell. But his work will live on. Last weekend I met several clusterheads who now have a better life quality and HOPE and via RC seed information most of their gratitude goes to Andrew Sewell. He has and will change lives, for the better.

What about your busting material, is it "fresh". Mushrooms will not keep their psilocybin indefinitively. Luckily, if I understood correctly you still have the RC seeds and Vitamin D to discover. I can also warmly recommend Liquorice Root protocol as well: https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1330748491

Yes, this article was one of the great big finds in last years for me (found it on Facebook). I like this guy's post as well: http://trusting-the-disgusting.tumblr.com/post/47351482695/so-the-eu-and-the-uk-government-are-blocking-the

LEGION, you are in the US right ? I have read of people finding great doctors to treat their clusters, it just might take some time. For me it has been a discovery to see it written that people can actually find good doctors concerning clusters. I have seen 95% of simply awful doctors, mostly neurologists in my 25 years. Around 50 doctors total. Before the internet I thought they are so "out of it" because we are in Finland (I always took latest CH information in english with me I had gathered from libraries, not once anyone read anything or was willing to hear me out) but nowadays I am not so sure. During the years there was several stuff I told them about, mostly they labeled it nonsense accompanied with a phrase "you are not a doctor, you don't have a medical degree" and few years passed and they offered the same things to me because they had become official forms of treatments. They just needed someone ranking higher than them tell them so. Back in the nineties I tried to get verpamil having read about a study and research. Nope; opioids and a appointment for a psychiatric, maybe I am "imagining the pain". Then O2, when I told them about it, the doctor laughed so hard and even invited his secretary to the room; "this patient wants oxygen for pain". 8 years later same doctor said "there's a new form of treatment, medical oxygen..." the list goes on and on.. About melatonin neurologist said it is a hormone and not intended to use in a pill horm; refused to hear me out. Few years later, "Have you heard about melatonin?" I am often sorry how much my experiences have affected my attitudes towards doctors (in cluster headaches). Nowadays I know several people under who's care I would be safe and well treated. None of them are doctors. Sorry for the rant. Keep looking LEGION, these folks can guide you further

In my case the Imitrex (and a bunch of others meds) made busts fail, even when working on that at least 5 day window. You sure you're not on any medicating that actually blocks busting from happening or is interfering? When med free, various busting techiniques became even more efficient. Wish you luck.

Detox walk is long and hard. Though it's only a few days. On your next attempt, gather as much helpers as you can. Good luck.

Very great to see you here Darby. This place more or less saved my life when battling with chronic CH. Warm welcome on my behalf as well.

Awesome thread and I am so glad I happened to find it. This is what I have been wondering from patient point of view for years. What are the actual receptors that need to be "hit" for the efficient treatments of Cluster headaches? It took me years to get rid of the prescriptive medication and start treating my CH with alternatives (with great success). Understanding the chemistry of triptans and how they affect our receptors in not a good way when considering the development of our condition was a big part in my decision to get rid of the pharma. I am also interested about the "condition" of the receptors and what part they play in Clusters. What harms them and what is good for them. I think in depression, alcoholism and in lots of things you have less receptors to be able to receive anything - some of these mechanisms probably apply to cluster headaches too, especially over time. I have sometimes thought that if I was forced (with a gun in my head) to use a prescriptive for treating CH it would be something that would mimic busting. Something affecting serotonin movement and if I would know the certain receptor(s), something to hit them. So am very interested in reading how this turns out. We have a danish scientist in our FB group who in my mind would be The Right Man for you to speak with. He knows his receptors and has written articles about them (in cluster headaches) Our group is at https://www.facebook.com/groups/ch.naturals/ I will also message him and direct him to this thread.

All you need is at Clusterbusters website. I would consider preventing and not waiting for the cycle to start. For busting you can find plenty of advice here on the board and on the website, how to prevent your cycle from starting. I also consider D3 vitamin regimen as busting and for most it's an easier option than old school. More info http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404 If you are not on any medication that prevents the use of these 2 wonderful herbs, they might be an option as well https://sites.google.com/site/hortoninneuralgia/resurssit/englanti/liquorice-root-protocol Good luckÂ

Awesome ! Not a familiar name to me though and I consider I know most of the finns who have CH and spend time online. I want to personally THANK Dan too for telling his story for National Geographic. No matter how much I have spoken or written, it is documentaries like this one that really turn heads and get attention. NatGeo was aired on finnish TV and I did my very best to make sure as many CH folks would see it as possible, advertised it on finnish CH sites (well on those which would publish my posts, since you still can not talk about alternatives here), even on "magic mushroom" sites for recreational users. Just to get the word around. I have often thought there is a lot of CH sufferers in Finlandia. Maybe it is our genes? We also (still) have pretty high suicide rate though it has improved for the better but maybe there is a link, via body-emotion-stress kind of thing. Since the discussion about alternative treatments is more or less forbidden here this creates the current situation; when someone finds relief from let's say psychedelics he "keeps it to him/herself" and disappears from finnish CH communities. Only people using pharmaceuticals talking with each other. Gladly, via our FB group, this has changed a lot. So, Dan, if you would be so kind and pass our address to Jarno, that would be great. We are at http://www.facebook.com/groups/ch.naturals/ Everyone here is welcome as well since we use english in our group too. Thumbs up for Dan for sharing your story and showing a great example MOD: Oh, CHFather had already linked, Thank You mate. jussi is also finnish and there are others but I can't recall the user names since they don't post often. Language seems to be a big barrier over here (as you can probably see from my english)