Finnish Horton Association: Horton 2025 conference 12.-14.9. in Finland

[Tony Only]

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!

[eagleswings]

Thank you Toni for serving the members in Finland- much love to all of you in Finland!

[Tony Only]

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 ...

Edited September 15 by Tony Only

[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 !