Tony Only

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

Since this story has alcohol involved, impossible to say. Vodka (one of the almost acetaldehyde free) is the protection alcohol of choice for those who get shelter from attacks using alcohol. It's a matter not often discussed since it's one of the worst triggers. But some get pain free days, even weeks with heavy intoxication from alcohol, but it's fine adjusting and imo not recommended for anyone since it's destructive in the end.

What an awesome happiness and well being post ! Nice to see you back here Ting !

I have reached 5 hours but that would not have been possible with some good (read: bad) drugs helping me out. There was at least verapamil (over 1000mg per day), cortisone (prescribed for daily until the end of time), triptans way over daily max + couple of epilepsy meds. How horrible the extension was they brought me my first hits ever where I lost consciousness. Kinda grim relief. But in your case, no medication, this is very, extremely rare so I would get a head MRI asap. I am guessing something strange in brain chemistry, might be a good idea to check out the bad options away first (tumor, blood circulation things etc.) before heading into busting or other options.

For secure messaging I would like to add privnote. Every message is destroyed after it is read for the first time and can be read (once) only via URL link.

Welcome to your new family Unclebird Others can help you with tests who are more knowledgeable on that subject. This is a wonderful place to be to find the best tools for completely controlling your cluster headaches.

It has only been removed from website very recently, I'd say in the last few weeks. I tend to check it when I guide people here.

Up until this point the busting and CB method has always been presented as website material as far as I am aware. CHfather: Yes, especially in Facebook people throw links around to Clusterbusters all the time and when CB method and information about busting was available that was ok. You came to the site, you got it, stayed or left. Now it's very hard to understand what this is about if you don't have any clue on your visit. I know, word of mouth etc. but still.

Yes, sorry everyone, it's my lousy english again. I know where it is here in the message board. But it has disappeared from the main website www.clusterbusters.org The last time I checked it was under "Treatment". I guide people here from our finnish group, international groups etc. and it has been praised how "complete" and clear it was (in the website, not in the message board) plus easy to find. Especially if you are limited in english skills, you need to hit the CB method easily (to be able to print it etc. and have it translated). I don't know how it is world over but I can say here in Finland people are not too good with boards, even when some crucial information would be on the message board, they avoid it and rather ask around. Clusterbusters method is something to be very, very proud of, it should not be hidden - it is just as valuable and serious treatment as the official ones.

Only thing I can find is via the Links, 1st link directs here. Imagine someone coming to the website for the 1st time and wondering what is busting, maybe a bit skeptical. Clusterbusters method was well explained, easy to find and the this site only place that offered it easily. Now it's way too hard to find for the newcomers, subject hard to "open up" unless someone is guiding newcomers step by step.

I have to give up, could not find it. Where has the Clusterbusters method been moved to ? Please don't tell me it's message board only nowadays. I believe it is absolutely No. 1 reason for people to come to the site and should stay easy-to-find. I think the CB method is something to be proud of, to be presented over various papers now replacing it in the "Treatment" section.

The goal is well explained in the link above "Is there a vent for CO2 to escape? Yes the vent holes are I the top. They are put in the top for a reason. The fundamental principal behind using air entrainment is to sufficiently mix the two (fresh air and stale air) together and then re-distribute them back into the environment in a more balanced way that is then more beneficial to the mushroom crop. Without this sufficient mixing of the gasses present within the grow space, the crops will remain stunted and will likely never reach their optimum potential. With the poor mans pod, the settling co2 air is met and diffused by a curtain of fresh air rising from beneath the Geolite surface. This rising flow of air is created from the air diffuser rod situated below the Geolite surface, which is powered by the air pump. The rising air pattern not only prohibits the heavier co2 air from settling down onto the bottom surface as usual but it also simultaneously diffuses the co2 with fresh air as it is distributed back into the environment or grow space where it can be put to good use. In this way, the poor mans pod creates the same desired phenomenon as offered by more conventional means of air entrainment found in much larger-scale commercial applications where a mixing box is commonly used to accomplish this important task. "

Naturally I have not tried any of these myself. I just happen to know this stuff. PMP can produce twice as big flushes as shotgun when set up right. But it's a process to get it working properly; good plan to start would be for an example terrarium of 70 liters, ONLY 2 holes on top (10mm wide each) and naturally 2 holes on the side for air hoses and pump that can deliver at least 200 litres per hour (even more the better). This should produce "o2 mattress" at growing level and Co2 should exit nicely. When it is set up correctly you will see the results. People I know would not go with anything else anymore

In most boards the guests are members, that will add to guest count before they login. But for some reason most of the board software I have seen counts logged in as guests as well (double count). I have always wondered how something so little can't be fixed. One thing might be nature of our condition, when in cycle people log in and post but other times they just follow not logged in. Dunno.

Poor man's pod is an automated chamber so it ventilates (co out, o2 in) and humidifies (o2 coming through the water) by itself. Can easily be left unattended for 3 days even much much longer. http://www.shroomery.org/9047/Poor-Mans-Pod

Bejeeber: I have always wondered are these happening all over the world already (as I would presume) but is it that patient groups in other countries just do not "advertise" about them? I am pretty sure everyone of us who have attended these here in Finland can't imagine their lives without them anymore.

I have been throwing the idea around in Facebook to have an international meet & greet here in Finland at the same Friendship Inn. They certainly would have enough room and I can't think of any other place better suited for this; Friendship Inn welcomes everyone, throughout the year, in a bad situation in life, maybe emotionally or maybe financially - they do not require payment if you wish to do volunteer work for an example. This place was magical. I felt that us clusterheads belonged "there". Quite a few clusterheads from US have been saying that some day they would like to visit Finland. Now wouldn't that be great ?

I will try to explain my personal opinion about Wikipedia one more time. I think people removing everything that do not benefit pharmaceutical companies (more likely harm them) are cluster patients, they have a name and I myself have a pretty clear idea who these people are. It does not matter if we would have 100 studies. We still don't have a chance because they have been preparing for this (to manipulate via Wikipedia) for quite some time. I have been in a CH group where there was discussion about this (to take "control" of Wikipedia to keep all and any alternative treatment talk out). Now reading through this thread and the Wikipedia changes log all I see is that we have been cleverly "played out", important additions removed justified with this, that and everything possible. They are experts on this and if you Google for an example some of these users (I did, to try to find out are they people I know) you will stumble into comments like "Something tells me they are sponsored by pharmaceutical companies" or "Perhaps this is a new occupation, editing Wikipedia for companies?". Concerning cluster headaches that may be not the case but their personal agendas are too strong for them to have the power to do what they do. If I am right, they have planned this a long time ago, been doing it for years and know how to roll it. Few of us who are interested about the truth and want to correct things do not have a chance because (I think) most of us are not manipulative, calculating or deceptive by our nature - that's just not what we do. To me it seems our best chance would be to challenge these people because games are games and they won't hold the test of time. I don't know is it possible to discuss about this with our real names. Real names would tell a lot. Now I will give up about the Wikipedia subject. It's very sad, the state of cluster headaches but after looking into these users the state of some other conditions as well that would have efficient treatments outside pharmaceutical company field.

Yep, that's me. There are also few CB board members in the picture, I'll let them shout out if they wish

Warm and happy PF wishes from Finland ! We had our 3rd conference among finnish CH sufferers (from Cluster Headache - Natural Treatments group) last weekend here in a beautiful place called The Friendship Inn. Lots of sharing, caring and good feelings and energy. Patients around the world were involved a lot in our discussions. We were also lucky to hear about very promising treatment option, traditional indian natural medicine, Ayurveda. Wishing everyone reading this all the very best - there is always Hope. Love & Light Our group The Friendship Inn

I think for a lot of folks FB is a place to spend (or lose) time. Majority seems to prefers FB over boards. I think for some people in a bad place FB offers "relief" to reach others fast and get support. Boards are more for serious information searching, learning and sharing. Facebook is pretty awful at that since posts in groups get forgotten over time, only way to really save information are notes. And then there's whole advertisement s**t and the NSA etc. I started out in the boards. Created a board for finnish CH folks. Then FB became more and more popular and it seems to enchant the majority, sadly, boards suffer. Nowadays I am a bit tired of the FB because there is so little crucial and important stuff, more of the daily chit chat which hides the important messages pretty well. Leaning back more into boards again. But if we have 5 active members in our finnish board, there's always ten fold (50 members) in the FB - board is too old school and not social network enough for most. I think people find and seek what they need. As a personal opinion it's a little shame so much CH power is in the FB.

spiny, oh yes ! 8-)