16-year-old boy
“During the time in Datteln I was slowly weaned from the cortisone and learned how to fight my pain. And so lost my fear of it completely and in that way actually got my pain under control. ...” More
I’m 16 years old and my story started in the 2010 summer holiday. I suddenly got really bad headaches every morning – always at exactly the same time. The pain was mostly over the left eye. The pain was so bad that I felt sick and dizzy. I just wanted to be quiet in order to somehow get through it. After two hours I was better, but from then on it was like that EVERY day. Always at 9:30 these incredible headaches would start. We were even in the clinic during vacation, but without the pain medication, there was no going further.
Back in Germany we tried to find out what was wrong. That was very difficult. The pediatrician sent us to a specialist at the university clinic. The doctors there very quickly said to me that I had cluster headaches, also called killer headaches. The problem is just that these headaches are hardly researched and adolescents don’t actually get them!! There was also no medication that adolescents should take.
It was really awful: The clinic had me on cannulas with strong pain medication every day, which I sometimes tore out because I couldn’t tolerate it anymore; I literally lashed out.
Then I got cortisone and for the first time the horror was over. I was so thankful. But cortisone at my age is really not so good, but at that point I simply needed strength again.
In order to get other opinions, we went to an alternative practitioner. I learned a lot there, but the remedy still didn’t stop the headaches.
My pediatrician was our greatest support at that time. He was also the one who recommended the clinic in Datteln. He was at a further training course and met Dr. Boris Zernikow - from the current standpoint, my absolute savior!!!
My parents, sister, grandma and grandpa were all powerless, they were helpless in the face of the whole thing and wanted so much to take the pain away. They really supported me hugely. Especially my mother did everything to find someone who could help us. She wasn’t well at that time either, because I suffered so much and she felt every attack every day.
My family also supported me very much during my time in the clinic; they were always there, although we live in Cologne and the drive is rather long. They all took turns being there, and that was great and really helped.
The people at school also reacted well. When I was supposed to get oxygen therapy they immediately offered to store it in the school, so that I would receive help immediately if I had an attack. Since not everybody always understood what was happening, not all the teachers reacted well, of course, but complained all the time that I was unmotivated and was just looking around. But that was just when I was trying to endure the pain!!!!!
The time in Datteln was very nice and helpful. I felt very good on the Lighthouse ward and it was unexpectedly helpful to get to know others who also suffered from pain. Of every sort.
It was nice to hardly have to explain anything to the doctors and the whole team, since they knew immediately what I meant. I immediately had a lot of trust in them. During the time in Datteln I was slowly weaned from the cortisone and learned how to fight my pain. And so lost my fear of if completely and actually got the pain under control. It sounds like magic, but the psyche plays a very big role in it. I have a graduated plan for how and when to react and distract myself and it has worked. My stay in Datteln is now almost two years ago and I’ve never had those killer headaches again. I’m certainly prone to headaches, but they are quite different now and don’t make my life a living hell. In this, my stay was a huge success.
At the final consultation the doctors made the point that we shouldn’t talk about the headaches anymore. No one should ask me about them, so that nothing would be set in motion again.
Each one of these questions costs 5 euros. Good idea from the team, but I haven’t gotten rich, since everybody has stuck with it. If there’s any news, I’ll let you know!!
Unfortunately I didn’t manage at school anymore. Even though I passed my year, I quickly had to admit that I had simply missed too much and had lost track of things. I then tried to repeat the year but that also wasn’t very helpful because the gaps were from the time before.
Two months ago I changed schools and I’m very happy. The director knew about these killer headaches and we were immediately on the same page. He accepted me in the school and I’m learning well again. I’m among the best in the class, have new friends but haven’t lost the old ones, so everything’s finally good again.
I still have friends from the time in Datteln; we were a great group. Okay, we live far from each other, but we still write.
Thank you, Lighthouse team!!!
I can only recommend to anyone with pain to go to you; don’t despair, but let yourself be helped. Believe in it!!!!