Tony Only

I can't just reply to questions and be done with it (so you can skip my reply if you wish). I work in psychiatric ward and get sometimes called to help when there are patients who are suicidal and have CH. Very, very often when CH is managed to get under control, the suicide plans vanish and again, very, very often never return. But there are people who have more complex problems and conditions and need help beyond getting CH under control. Then you need to keep reaching for help - relentlessly as long as you need, or better yet - find a support person who helps you fight. And it's incredibly tough when the things that work for others do not work for you - these people would need a community of their own. People with torturous chronic pain - whatever the diagnosis or no diagnosis at all, who have not yet found help and those who have found something that helps mixed in one group. I hope you keep reaching out and find help.

Some of the reviews on Google

Google search of Gliacin reveals pretty much immediately that ↑this↑ is a scam.

Yikes ! Didn't even think of that ! Few more photos

4am in the morning I wandered to a moose statue - someone had painted it's eye purple. Got a bit lost there but then the owls started whispering.

I will try to post some pictures here. First of all - Thank You to Clusterbusters for paving the way. We are just following your fine example. The only way we managed through our conference was because Bob Wold sent me a spare brain. We love you all. Horton 2024 conference - Hotel Arthur, Helsinki - 14.9.2024 09:30- 10:00 Welcome words, the day's program and the association's activities 10:00- 10:20 Woikoski tells about medical oxygen therapy 10:20-10:30 Break 10:30- 11:15 New European treatment recommendations - Ville Artto 11:15- 11:30 Injection treatments in Horton's care - Matti Ilmavirta 11:30-12:15 Lunch 12:15-13:00 Possible problems of the treatment path - Risto Rapila 13:00-13:30 Peer support as part of the official treatment path. Information about Horton's self treatments - Toni Taipale 13:30-13:40 Break 13:40-14:15 Horton's steps - Niklas Koponen 14:15- 14:45 Discussion and questions 14:15-15:15 Coffee service in the meeting room 14:45-15:15 Your quiet spirit - New book about Horton - Tiia-Lotta Lintula and Janne Haakana 15:15-15:30 My experience of surviving Horton - Henry Scheinin 15:30-15:45 My experience of surviving Horton - Panu Järvinen 15:45- 16:00 Responding to intermission performers and association representatives 16:00-16:30 Watching video greetings and video call to Clusterbusters Conference in United States 16:30-16:40 John Fletcher 16:40-17:00 The future and finishing the official agenda 17:00-21:00 Free time together and conversation

It's in northern Europe, Sweden.

Thanks so much @Bejeeber That's a familiar nuisance ! I see a lots of interesting articles on the web on your side of the world, but nowadays can't often access them

@Bejeeber Ahem. I have an alternative explanation for the poster ! (Prediction to the future) There will be a US doctor named Dr. Seuss who will administer some serious doses of psychedelics in sessions spaced 5 days apart to patients suffering from Horton's neuralgia. In every session, an album by an english rock band called The Who is played in it's entity. Patients describe that in these treatment sessions they feel how their illness is slowly but steadily becoming fearful of the Who's music, and during their trips they actually see how every power chord struck by Pete Townshend is breaking bricks in the brick wall of Horton's neuralgia. Major breakthroughs for forced remission are usually achieved around in the beginning of the 5th - "Who's next" session when psychedelics are kicking in and Baba O' Riley is playing (and needless to stay, bricks are flying). This leads to a saying "Horton hears a Who" when talking about this treatment !

Wishing great Awareness day to everyone Still refusing to call it a headache in Finland https://www.facebook.com/hortonassociation

Article in swedish: https://www.hjarnfonden.se/2023/03/varldens-forsta-centrum-for-klusterhuvudvark-oppnat-pa-karolinska-institutet/ And a Google translate: The world's first center for cluster headaches opened at Karolinska Institutet Cluster headache (Horton's headache) is the most painful headache there is and is sometimes called a suicide headache. Now the world's first research center completely specialized in cluster headaches has been started at the Karolinska Institutet in Solna. The center has been made possible thanks to support from Hjärnfonden and a large donation from philanthropist Rune Andersson and his foundation Mellby Gård. On February 3, the world's first center for research on cluster headaches was inaugurated at Karolinska Institutet in Solna. The coordinator of the center is Andrea Carmine Belin, associate professor and research group leader, who for many years has received support for her research from the Brain Foundation. She is the spider in the web and the one who decides which projects should be pursued. - We needed to create a center for research on cluster headaches in order to gather all the expertise at Karolinska Institutet, start new collaborations and to make the disease visible, she says. At the new center, research and clinical activities can collaborate with the goal of better understanding the mechanisms behind the disease in order to be able to make a diagnosis earlier and develop better treatments or even a cure. - The fact that the center is right next to clinical operations that treat patients with cluster headaches and migraines means that we can easily test what we come up with, new treatments and other things, directly on the patients, says Andrea Carmine Belin. Donation of 34.3 million made the center possible The new center has been made possible through a donation of SEK 34.3 million by business leader and philanthropist Rune Andersson through his foundation Mellby Gård. The support is divided over seven years, which guarantees a long-term perspective and continuity in the research. Gilberto Fisone is a professor of neuroscience and has been involved in the project to set up the cluster headache center from the beginning. In addition to being on the board, he is head of the department of neuroscience and sits on the Brain Foundation's scientific committee. - It all started with the support that Andrea Carmine Belin's research received for many years from the Brain Foundation. The opportunity to build this center for cluster headache research was already created there. At an earlier stage, a donor in the form of the philanthropist and business leader Rune Andersson and his foundation Mellby Gård came in via Hjärnfonden's Donor Program and supported the research that Andrea was conducting, he says. At Karolinska Institutet, the conditions for creating a center have existed for a while with modern research environments and a well-developed contact with care. But above all because of the completely unique biobank with biological samples and clinical information from patients diagnosed with cluster headaches. - The biobank is the world's largest and it is the entire core of our research. With it as a base, we can do both biological and epidemiological survey studies. We continue to build it all the time, says Andrea proudly. What has been missing for a research center to become a reality has been funding. Therefore, Rune Andersson's donation of SEK 34.3 million was absolutely decisive. - Rune Andersson's contribution is extremely important, above all because it is long-term support, says Andrea. We have received funding to run the center for seven years and this investment will be able to lift our research even further and bring us closer to the goal of finding a solution to this disease mystery. What does the Hjärnfonden's support mean for the centre? - The brain fund has meant an enormous amount to me and the research I conduct, says Andrea. I received my first scholarship as a newly awarded researcher from Hjärnfonden and it enabled me to continue on this path. Getting support early in the career is extremely crucial for many researchers, in order to be able to continue at all. If the Brain Foundation had not supported my research from the very beginning, we would not have a cluster headache center today. What projects do you have going on right now? - Heredity is our greatest interest. Between 11 and 20 percent of cluster headache sufferers have a close relative with the disorder. We look at some different genes, if you have certain types of deviations in them, it means a greater risk of getting the disease. Circadian rhythm is also important as we know that nocturnal attacks of cluster headaches are common. That's why we follow patients' sleep patterns closely. We are also very interested in gender differences and have seen that women suffer more from the chronic variant of cluster headache while men more often get the episodic variant. The result can be of great importance for how and when a diagnosis is made and what treatment the patient receives. How was the inauguration of the new center? - Very funny! It was a good opportunity to invite those who supported our research, collaboration partners and the rector of Karolinska Institutet. The support from the private sector is incredibly important for our research to continue, says Andrea Carmine Belin. What does the center mean for KI and your institution? - It is very important for both the department, for Karolinska Institutet and for research into cluster headaches. There is no other center in the world that is focused on cluster headaches. This puts the diagnosis on the map internationally, says Gilberto Fisone. The fact that the support to the center is also long-term, that it will be implemented over seven years, gives us opportunities to coordinate the research better and gives room for new ideas and to test new angles. It is unusual for medical research in such a specific field to have the opportunity for such continuity at all.

Oh no, not me, it has been submitted by PhD student Felicia Jennysdotter Olofsgård in Sweden. Here is a little more information about Centre for Cluster Headache, sounds very very promising ! https://ki.se/en/research/about-the-centre-for-cluster-headache https://nordiclifescience.org/the-worlds-first-research-centre-for-cluster-headaches/

Same for me too ! Doing 10k I still got migraine activity and sometimes CH too, now 15k keeps me pain free. Happy for you @spiny