– Without this treatment, I see a rather dark view of the future. I simply don’t know what to do. That’s what Kenneth Worpvik (35) says. He suffers from chronic cluster headaches and is distraught about the situation. Without treatment, the disorder causes daily attacks. 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. Without the treatment from St. Olav, there are almost no other alternatives that give the same effect. Photo: Karoline Opsal / news Not publicly approved The treatment Worpvik has received at St. Olav’s hospital in Trondheim 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. But now it stops. – Now there is a temporary halt in treatment due to the accumulation of side effects in this particular patient group. That’s according to senior physician and research leader at St. Olav’s hospital, Erling Tronvik. – In addition, follow-up of side effects with an experimental treatment such as this is very resource-intensive when you do not have the safety net and routines included in clinical studies. The side effects are, according to what several in the patient group have been told, a risk of double vision. – If someone had told me that the risk of going blind was present, I would not have cared in the least. – I am willing to sacrifice quite a lot to avoid that pain, says a despairing Worpvik. And he is not alone in his despair. Research leader Tronvik confirms that the patients have a strong desire to maintain the offer. 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 very low priority since there are so few of us. The treatment Worpvik is dependent on is called Multiguide, and consists of shutting down a nerve center located deep in the head with Botox. This is what it looks like after completed treatment. Photo: Privat It is done using a surgical tool that can resemble a long needle. It is introduced through the cheek and into the head. Didn’t believe it Inside the patient group, rumors of a temporary halt in treatment have been spreading since November. On 12 December, the phone Worpvik dreaded came. – The world just collapsed a little. Or it crashed. Worpvik feels he and the few others who are in the same situation are being de-prioritised. Photo: Karoline Opsal / news Only 13 people in Norway have received this type of treatment. This corresponds to 50 treatments a year. – I question the decision that there are not enough resources to follow up 13 people. I find that very strange, says Worpvik. Tronvik, on the other hand, points out that it has been demanding to offer 50 treatments of this type a year, for a small team who do this on top of their regular work. – We must therefore make an overall assessment as to whether we have the opportunity to continue with this within reasonable limits. According to Tronvik, resources have never been set aside for this treatment. Erling Tronvik during the opening of the research centre. Photo: Jøte Toftaker / news Worpvik had her last treatment in November, and should have had her next at the turn of the month in January/February. Without the treatment, he will be bound to go to his GP three times a week to put a nerve block in the back of his head. It has an effect of about 48 hours. But this must be repeated every week, and Worpvik fears that his quality of life will become even worse. – This treatment has been my lifeline. It has been what has made me able to live. Afraid at night The attacks come when he sleeps. Then he suddenly wakes up from intense pain behind his left eye. – It hurts so much that I feel like tearing my eye out. To protect myself from doing that, I tie a towel around my hand. During the period with many seizures, Worpvik sleeps in a room down in the basement. There are towels, syringes and oxygen ready. Photo: Karoline Opsal / news Seizures can be broken with the help of high-pressure oxygen. With the right breathing technique, it can be over in 20 minutes. But if the pain makes it too difficult, the attack can last up to 40 minutes. The oxygen does not provide any relief by itself. The knowledge that the attacks come when he is sleeping has made it difficult to go to bed at night. – I am terrified of sleeping. Really scared to death to sleep. The oxygen tanks last for about three bouts. Photo: Karoline Opsal / news As a result of the illness, he has been in and out of psychiatry. Depression and anxiety characterize large parts of everyday life. – My mental health is completely destroyed. – Makes you want to turn off the light The disorder causes such severe pain that it has been called “suicide headache”. – The thoughts come when things are at their worst, hence the name. It makes you want to just turn off the light when it’s at its worst. The father of two has felt the thoughts creeping up on him several times. The only thing that keeps him going is his family. – My partner and children are the ones who keep me going. That’s a tough claim, but I don’t know where else to get my will. – Without my children, I would have lost all motivation to continue. Photo: Karoline Opsal / news
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Now he loses the treatment – news Trøndelag – Local news, TV and radio
