Tony Only

DAY 3 - Sunday We started our morning with yoga, lecturer, yoga teacher and yoga therapist Tiina Hemminki guided us to safe and relaxing journey, where one could notice the signals from our body following Tiina's soothing voice eyes closed. Yoga Federation of Finland has their own orientation of hatha yoga which is the one we did. Especially interesting were the notions how one can affect to different sides of your body just by thinking and also how we can guide our breathing via left or right nostril, in and out, using only your better non-Horton side for an example. (yoga moment starting and adorable Tiina) Next in line was OLKA coordinator Tarja Kulmala. OLKA means coordinated organizational and volunteer activities in the finnish hospitals. OLKA also helps non-profit organizations to reach their audience and connects them to hospital units. OLKA also has an app called Toivo (Hope) where you can find peer support for any condition you may have 24/7. We have done cooperation with OLKA right from the beginning. (OLKA coordinator Tarja) Last presentation of the day was an Art photographer and an Expert by Experience Riina Sorjonen who talked about peer support via her own story. Main focus was also on keeping up the inspiration in life and always looking for new fun things and not giving up on anything you have enjoyed doing in life. This too was something different and a beautiful closing performance for the great event. Planned Safe room sessions were cancelled due to lack of personnel but we had such an open, honest, wild, limitless and crazy vibe and discussions all the time that there really was no need for "safe space" - everyone and every space was safe. Presentation about psychiatric burden and psychiatric symptoms caused by Horton was cancelled as well. When planning the event we noticed that there seem to be no one in the local healthcare (psychiatry) that could talk about this subject - there were zero volunteers. So, this really needs to be covered next year. Tired but happy, until next year !

Our finnish conference was a complete success. I still don't understand how, with our limited resources and fuctioning brains available. This time we were in my hometown Seinäjoki, it's a bit further away from larger cities. Nice round-shaped hotel called Sorsanpesä (Duck's Nest) surrounded by nature, by the river. Here's a short rundown. DAY 1 - Friday No official agenda. We were welcoming people arriving at the hotel and spent the whole evening sharing stories and having fun, getting to know each other. DAY 2 - Saturday President of Suomen Horton-yhdistys (Finnish Horton Association) Julia Bergroth and treasurer Toni Taipale opened the 2nd ever Horton Conference at 9am saturday. (Julia and Toni opening) We now have a medical advisor of our own, GP Risto Rapila with staggering amount of Horton and ER experience. He is a magnificient person and absolutely priceless to us. Risto presented about our typical problems and possible relief in the future, and also what people with Horton are using already by themselves and why our treatments work. (Risto and Mikko (Horton patient) were interviewed for the local newspaper) Neurologist Matti Ilmavirta presented the injection treatments again like last year and we also had a demonstration about them. There are only few doctors here with an expertise such as Matti's and these options should be available more widely. Matti has trained a few younger doctors for these procedures. Woikoski delivers medical oxygen in Finland, they had a presentation. (Tiina from Woikoski presenting) Then time for some oxygen demonstrations, discussion and questions. (Toni and Aapo explained oxygen) Niklas Koponen talked about coming down the "Horton stairs" and climbing on a hills instead, finding enjoyable views and activities in life. Are you able to get rid of this condition combining the right treatments (psychedelics) and having happiness as a permanent goal in life? How to first treat your own children, then teach them how to manage with Horton when you are not around anymore to guard them. This was "something different" Medical director of local neurology unit, Jari Kankaanpää did a comprehensive presentation about orthodox treatments and the discussion was about lack of functioning treatments. Toni from Finnish Horton Assocation (Suomen Horton-yhdistys, in finnish) talked about the history of our association and before that, a patient community. He also covered the meaning of Clusterbusters in our existence and other international connections and stories behind things. Final presention for saturday was by an acupuncturer Veera Majamaa who shared her techniques of rather simple acupuncture treatment specific for Horton. She shared a treatment guide and everybody was able to try needling on themselves (on the top of the head). So there were a lot of clusterheads walking around with needles in their heads (Acupuncture by Veera Majamaa) Unfortunately there were quite a few cancellations. We were supposed to have body workout for issues one might have in their body created by Horton attacks, personal training session and material you can take home to prevent these issues. There was also a presentation about what Horton does to your ability to work and function and how to cope with this in society. Hopefully these will be included next year. Many of the presentators were Horton patients themselves. I will add sunday later ...

One of very common topics in finnish CH communities is regular use and especially over-use of triptans rendering oxygen ineffective. I have also experienced this myself. Some notice oxygen is less effective when usual and for some it does not work at all. That's a place where you don't want to be. But don't worry, when you stop using triptans the oxygen response will come back. There are also reports on other medications, especially when the overall medication burden is heavy. I see people all the time who have given up on oxygen and they are doing loads of prescription medicines simultaneously and attacks keep on coming.

The Horton conference 2025 organized by the Finnish Horton Association brings together professionals in medicine and pain management and - most importantly - peer support. As a welcome continuation of last year's event, the association is organizing the Horton Conference, this time on September 12–14, 2025 at Hotel Sorsanpesä in Seinäjoki. Due to the wishes of the participants, we are now expanding the event to a full weekend. The event's own website is at https://tapahtuma.hortonyhdistys.fi and tickets can be bought via the site. Our event brings together people with Horton's neuralgia, their loved ones and experts in the field to share information, experiences and peer support. The goal of the weekend is to provide participants with up-to-date information, practical tips for everyday life, and strength and hope through community. The event offers a unique opportunity to directly meet patients and their loved ones and network with other experts. People with Horton's neuralgia have to fight against the most severe pain a person can experience. The more severe the form of the disease, the greater the impact it has on all aspects of life. Pain manifests itself in attacks and these attacks are repeated, this brings fear as one component and leads to traumatization before long. Those who have been ill for a long time may be suicidal and, for example, post-traumatic stress disorder is fairly common among them. Getting control of the disease and the feeling of control experienced by the person are usually some kind of turning point for the better. This is not always achieved, because a proper, effective and safe treatment has not yet been developed for a fairly rare disease. The event can also be found on Facebook. Come join us and become empowered!

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 !