Salander

This was posted on Cluster Headaches Facebook group on 16th of December, latest reply from Entheogen "We are still on track with the medication development process of BOL-148 and made more significant progress so that there is hope that the process will begin with experiments in humans next year. A company was found who is willing to develop the molecule into a medication and the appropriate contracts were signed." Note, WERE signed not will be signed

Was this Cluster Headache Support Group as well ??

I do not see it as cowardly, I simply documented what I saw. Facebook is problematic site but no matter what site it is in my opinion people must be able to talk freely. Chris started deleting this guy's very decent comments about liquorice root protocol then threw him out. Reading this thread now it seems he has done it to others as well. That is no way to make it all better for us cluster headache sufferers. If there is some sensible explanation to that which I do not grasp I'm all ready for hearing it. It is good to remember that just in life, there is all kind of people out there in CH communities. We just have to be patient for the bad eggs to crack.

Exactly my thoughts when I read about fundraising in Facebook Cluster Headaches group... I have seen a lot of things happen via crowdfunding, although in smaller scale but clusterheads surely need one !

I found a bit maybe a little relating so I quote our admin from our natural remedies for cluster headaches Facebook group: Memories from the nineties. On finnish TV channel 1 there was a documentary (1998-1999?) about cluster headaches (back then we had a different name for them here in Finland, forgotten by now) and it already back then described the changes in hypothalamus' size and temperature during a CH attack. What I still remember best about it is 2 details; the only group of people (except CH patients) who had these changes going on in their brain were cab drivers (!). The doctors in this documentary said it was because of the huge maps they had to memorize (way before navigators). The other thing was Mexico City, back then it was the only big city on the planet who had children before school age having these weird headaches treated with oxygen, which turned out to be CH attacks. Doctors said they were caused by pollution, Mexico City being the most polluted city on the planet back then. It would be really interesting to learn more about relationship between not-so-voluntary learning and air pollution and cluster headaches. I was trying to google the percentage of smokers among CH patients and stumbled into an article that says Cluster headache patients have "distinctive facial features" and even describes these features. It might sound like a lot of bull, but in the same (golden) nineties my neurologist gave me an article (and I have sweared countless times not finding it anymore) which had facial shots of CH patients during a CH attack side-by-side. Seeing all these peoples faces side-by-side really woke an weird feeling that there is "something in this", hard to describe. There even was an elderly woman who looked a LOT like me I have later thought by myself that pain attack leaves a certain "trace" to CH people's faces as wrinkles etc. but that we would have similar facial features is news to me. This might be nothing but check out the link below ! http://www.emedicinehealth.com/cluster_headache_faqs/page5_em.htm

How awful, for a child to have cluster headaches. I really feel for him. I hope this community can help. I do not like treating clusters with current medication, cortisone (the worst), verapamil (heart drug), epilepsy drugs and what not even on adults since they are all medication NOT made for clusters and 99% only treat symptoms and bring horrible side effects (at least on the long run) and in child's case it probably is even worse. Great that you are looking for alternatives. I don't know how dangerous it can be treating a child with mushrooms or seeds. But oxygen is safe. That will deal with the attacks. Then there is liquorice root protocol (can't be used with meds though), vitamin regimen (I assume it's way safer than prescriptives but don't quote me on this), energy drinks (with taurine, for the attacks) and melatonin. He is on my prayers. Wish you all strength to endure.

Just wait for the groups admins to accept request to join (do not press cancel!). It may take a while since there's only 2 admins at the moment. I run the board, other people manage the facebook but I sent them a message via my mobile to hurry hurry In Finland the atmosphere towards all natural treatments is rather hostile, that's why we chose to keep our group closed. Which has turned out to be a good choice many times. Great to have more people involved !

Thank you all for your kind advice. "Discontinuing" was a good tip, "taper off" or "tapering off" inserted into Google works well too. We have a lot of people from all over the world in our Facebook group already, everyone interested about natural treatments in cluster headaches is most welcome to join us http://www.facebook.com/groups/385160354828914/ Love ya folks !

I am medication free myself, it was a 3 year long battle. My heart has got used to verapamil, not sure I can ever get rid of that without a stroke. I am asking for behalf of other finns here in Finland since most don't understand english, if there would be a guide, I would translate it. People are on all kinds of different meds for CH here, not just few. Thanks for your help.

I am looking for a guide to detox from prescription medicine. Could not find one. Any links or tips where to search? Thanks.

If I have understood correctly from what I have read, our hypothalamus (where we aim with mushrooms) is in different state in sleep and in wake state. I recall there is at least temperature changes (as in cluster attacks). I was thinking you'd like to "hit" the wake hypothalamus. Just my ideas, would be nice to have some real data or experiences if somebody has tested the same batch several times with sleep right after or staying awake. Not many would probably notice the changes in the length of their PF time though, if not paying attention.

One thing I have been wondering for few years and have not found an answer anywhere on the internet so I decided to ask you good folks. Can going to sleep pretty soon after the dose weaken the effect of mushrooms when treating cluster headaches? By weakening I mean the length of pain free time mushrooms can bring when used off-cycle as a preventative. I have a gut feeling that after dosing one should stay awake and not dose at bed time for an example. In my mind clusters are married to our sleep so this might not be that far fetched. As as example (my english ain't that great so I am not sure will anybody understand what I am trying to say) : You dose with mushrooms when NOT in cycle and go to sleep right after, you get 3 months of PF time. You dose with mushrooms when NOT in cycle but stay awake the time you feel the "effect" and get 6 months of PF time. Just a theory but it would be interesting to get solid facts.

I witnessed the strangest thing today...there's a new Facebook group, "Cluster Headache Support Group" I think it's ran by Chris Hannah. Somebody posted about Les Genser's protocol and was attacked rather personally and all his posts was deleted and he "left" the group. I sensed this was something personal between Les and Chris Hannah but it seemed really odd reading the disappearing posts and now nobody gets to know about this whole protocol. I don't even want to post about anything because of this Chris dude. The amount of censorship on the groups 1st day is mindboggling and really sad, people suffering from cluster headaches get only the "selected" information by the groups admins. MODIFY: Seems they are both from Philadelphia, just a coincidence? On Chris' profile it says "Hey, no worries. Opinions are good... that's how we learn from each other." Oh, yeah, right

My oxygen bills are roughly $500 here in Finland per month (when in cycle) and about $250 per month to have a bottle just in case. It's a business built in our sickness back here. I have 2 written documents from local hospital (written by 2 different doctors) that I should not have to pay for O2 at all, it should be normal health care as a citizen in my town. The head doctor has dismissed these documents and made me pay these for years and years, I think there has to be some kind of almost conspriracy here; head doctor probably benefits in the form of money, or something. Needless to say I have been broke for years. O2 equals staying alive for me.

I just read a post on finnish CH site, someone had managed to end his cycle with herb called Maca root. Anyone know anything more about this? Found this with Google: "Maca stimulates and nourishes the hypothalamus and pituitary glands which are the "master glands" of the body. These glands actually regulate the other glands, so when in balance they can bring balance to the adrenal, thyroid, pancreas, ovarian and testicular glands." Source: http://www.naturalnews.com/027797_maca_root_hormone_balance.html

We have been trying to reach Les Genser by e-mail and facebook for quite a while with no success. Could anyone help us out? This is concerning our finnish message board and treating clusters with more natural ways.

http://survey.constantcontact.com/survey/a07e5lc5y7agyhhgd2b/start Please remove my post if this has been discussed here already but I could not find it mentioned. Strange since it mentions Clusterbusters. Filled mine already. Great to see liquorice root is mentioned as well.

Ahoy, ahoy, we could really use that links page ! I don't know are these the ones you mean, I hope so http://www.mushroomvideos.com/BRF-Pf-Tek

If you are detoxing anyway, you might want to try liquorice root protocol. I found it way more powerful than melatonin or D3/Omega3.

It's been removed and other people probably can guide you better than me but pretty good O2 page is http://www.clusterheadaches.com/O2/index.html. Get that oxygen, no matter what and kiss the triptans goodbye. You will live longer. Avoid the unavoidable complications from Imitrex shots in the long run.

One should also not be in too much haste with the floating test. Let them float for a while then poke them under water with your finger, some of the floaters will sink when air bubbles are released. I think these late-sinkers are usable.

I myself found liquorice root being really effective on treating CH and I know quite a few people here in Finland trying it out as well. We know it is not to be used with triptans or verapamil but what about topamax? I am asking on behalf of somebody, do not use dopemax myself.

There was also a great links page (in CHFather's post) that I think could be included in the first post. Now that links page does not exist or it may exist somewhere else.

I think most people (myself included) coming to the Clusterbusters message board for the first time end up on this thread. But many of the links provided lead to "not found" page so I think this should be the first thing to do here to modify this post. Urgent !

I don't have the real knowledge but I have understood that when you have CH your hypothalamus is completely messed up, more with others and less with others. And this condition is for life; people who don't get attacks anymore still have "faulty" hypo in their head and it can be seen in head MRI for the rest of their life. When in pain cycle there's a storm in your hypothalamus and I think this is why mushrooms work so well for clusters. I do not know that much about migraines but I think they differ in this ?