Our Petition in 2020

Did you know:

There is a medical condition that has a nasty nickname: “suicide headache”. This is because the suicide rate among people who have this horrible condition is about 20 times the average. The official name of this condition is “cluster headache”, but many patients prefer the term “Horton’s neuralgia” because headache is such an understatement, and it can lead people to underrate the severity of this condition.

This syndrome – often described as the worst pain known to medicine – manifests itself as attacks of severe pain that appear suddenly, that can feel like being stabbed in the eye or getting a violent beating. These attacks can happen many times a day, and often they wake a person up from sleep. If you can imagine an attacker visiting you every night and beating you up in your own bedroom, you can understand how many patients with Horton’s neu end up traumatized – sometimes diagnosed with PTSD – and live with constant fear of the next attack and how bad it will be.

Here comes the amazing part and a cause for hope. There are several substances, usually with psychedelic properties, that can often prevent complete pain cycles and attacks from happening. Horton patients describe them as “resetting their brain” (perhaps by acting on a malfunctioning hypothalamus, which might cause these attacks, according to a credible theory). These substances dramatically reduce suffering and can actually save lives. But they are still illegal in most countries. Patients who choose to use them anyways to prevent their suffering are therefore on their own in solving safety issues, cost issues, interactions with prescription medications etc. They are also forced to break the law in acquiring these substances, even though they have a legitimate need to treat their own pain. Needless to say, this is unreasonable for everyone.

These and other treatments are being used by patients and shared among patient communities, but the research is lagging too far behind. Supporting this research and making these treatments well known and legally available for everyone is, to extend the metaphor, like ensuring that the police that will catch the attacker and prevent him from entering the patient’s bedroom. We ask you to imagine the positive effect this will have on quality of life, saved work hours, marriages, health, and so on.

It’s 2020, yet patient communities fighting Horton’s syndrome and sharing experiences and knowledge are still very fragmented around the world. We need to join forces and together create a movement that will make effective treatments legally available for everyone in need and bring an end to patient suicides.

To achieve this, we are working together with OPIS (Organisation for the Prevention of Intense Suffering), a Swiss NGO promoting compassionate ethics in global decision-making. OPIS advocates that people suffering from cluster headaches should be able to legally access the most effective treatments known.

Our joint approach includes:

  • Raising awareness among physicians worldwide to help reduce time to diagnosis
  • Communicating information on cluster headaches and evidence for effective treatments
  • Supporting efforts to develop promising therapies
  • Advocating for changes in legislation to reduce obstacles to availability

Read more: https://www.preventsuffering.org/cluster-headaches/

If you wish to join us or find out more about our plans, please contact either me or OPIS. This will take us one step closer to a pain-free life for all Horton patients – together!

Tony Taipale

Horton Association Finland

#hortoninsyndrooma #sarjoittainenpaansarky #hortonssyndrome #clusterheadache #CHAD2020

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