– I don’t celebrate until I see that it is back on properly, but I am happy. That’s what Kenneth Worpvik (35) says. news told in December 2023 about Worpvik who lives with the painful disorder cluster headache – also called suicide headache. Starting up again Worpvik and 13 other patients have received treatment at the research center at St. Olav’s hospital in Trondheim in recent years. Just before Christmas, they learned that the treatment would no longer be offered. The patients have now been informed by the hospital that treatment will start again as soon as the practical arrangements are in place. This is revealed in an article published on Headache Norway’s website. Worpvik does not dare to celebrate quite yet. Photo: Karoline Opsal / news – I was a little put off by the fact that it turned around so quickly, says Worpvik. He received a phone call from the senior physician and head of research at St. Olav’s hospital, Erling Tronvik, on Friday 12 January that the treatment would continue. – I did not believe that they would start up again at all, it was perhaps a bit pessimistic, he admits. Tronvik, on the other hand, says there was always talk of a treatment break. – We have followed our plan and carried out this evaluation, as well as had a constructive dialogue with the hospital to ensure adequate follow-up of this patient group. Life-saving treatment – What does it mean for you that treatment starts again? – It is life-saving. It’s that simple. – Just being able to function a little in everyday life and be with my children. That’s what matters. Simply being allowed to live. – And you can do that with this treatment? – Undoubtedly. Still, he dares not hope for too much. In a letter from the neurological outpatient clinic, it is stated that in December the hospital refused to include the treatment under its clinical operations. – It is negative because then the treatment will most likely stop again when the studies are finished. Photo: screenshot / Karoline Opsal Tronvik confirms that they have applied to include the experimental treatment as part of ordinary hospital treatment. – The answer was that the treatment is currently not sufficiently well documented and that the treatment must be discontinued. Accumulation of side effects The treatment has been study-based and not part of the hospital’s publicly approved treatments. It has been done on the initiative of doctors and researchers outside working hours. The hospital previously informed that the cause was an accumulation of side effects, and a lack of resources to handle these in a good way. The start-up only applies to the 13 patients who have been in active treatment recently. The hospital will not accept new patients for this treatment until efficacy and safety can be documented. – We understand that patients who are already receiving this treatment end up in an unfortunate situation with such an interruption. The hospital has therefore allocated some resources so that treatment can be continued for the time being for exactly these patients, says Tronvik. He adds that the plan is to start up again as soon as possible. – The 13 of us are lucky now, but there are many in similar situations who are just as desperate and wish they had this treatment, says Worpvik. Worpvik would also like to thank the team at the neurocentre. – I have to add that I think they have stood up for us. I want to thank them for continuing. Few alternatives Without the treatment from St. Olav, there are almost no other alternatives that give the same effect. – It is an insanely bad treatment option. I feel we are getting very low priority since there are so few of us, says Worpvik. The treatment he has received at the research center is called Multiguide, and consists of shutting down a nerve center located deep in the head with Botox. – This treatment has been my lifeline. It has been what has made me able to live. This is what it looks like when Kenneth receives treatment. Photo: Jøte Toftaker Without treatment, the 35-year-old has daily seizures. The accompanying pain is unbearable. – It feels like someone takes a knife straight from the forge and slowly pushes it into my eye, and at the same time twists it around – without me being able to do anything about it.
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Taking back vital treatment for patients with cluster headaches – news Trøndelag – Local news, TV and radio
