Wolfgang Q. (39) electrician and his wife Kathrin. Diagnosis: cluster headache for twenty years

Kathrin: Before our wedding a year ago, I had experienced a few cluster attacks with my husband, but the last phase of pain was worse than anything before. The attacks occurred up to eight times within 24 hours, mostly at night. I hardly recognized him because his whole personality changed. He became very aggressive, like a caged animal pacing back and forth restlessly. I was scared out of my mind! He never attacked me, but pushed me away and wanted to be left alone. The cats also noticed this and hid. I wasn't afraid of him, but I was afraid of him. Sometimes he also cried a lot.

Wolfgang: Yes, that was really hell. Of course, when the cluster started about twenty years ago, I didn't know what was going on. The pain was in the left temple, especially when the air was dry and lasted thirty to sixty minutes. During the attacks, which occurred during working hours during the day, I would quickly run to the door. Somehow this always worked without attracting attention, for example by taking fewer breaks or not writing down one or two overtime hours. I tried to keep my nerve, but once the thread broke, I became very, very angry, and unfortunately my wife felt the same...

Kathrin: I begged you to go to the doctor!

Wolfgang: I had that behind me a long time ago! For example, the ear, nose and throat specialist. He operated on the nasal septum and the turbinate, and after that there was peace and quiet for a while. But then it started all over again. I became a big Thomapyrin fan and over the years I financed at least one luxury car for its owner through my pill consumption. Now I know that regular painkillers don't help, but back then I popped a handful. When the attack is over, you think the drug helped and take it again next time. I also instinctively did something that is now expensively prescribed: oxygen therapy. Regardless of the wind and weather, I went out on the balcony at night and just took a breath, concentrating completely on breathing.

Kathrin: One Sunday we drove to the Baltic Sea, and on the way back you had this attack. You simply drove to a bus stop on this busy federal highway and jumped out of the car. I sat there and turned on the hazard lights. I was in a panic that you might throw yourself in front of the next bus!

Wolfgang: Up there on the country road I just couldn't do it anymore. It was bright sunshine and heat is really bad. I just wanted to be in the shadows!

Kathrin: Another time you almost beat up a police officer...

Wolfgang: We were traveling in the car while half the city was closed due to a major event. When the attack came, I stood somewhere on the edge where I wouldn't interfere with anyone. As soon as I stood, a police officer like Django came towards us. I was about to attack him, but I pulled myself together and kept going. I stood again at the next intersection.

Kathrin: You turned off the engine and just walked away. That was so terrible! I felt so alone and helpless and vowed never to ride with you during a period of pain again. I don't want to have any trouble with the police!

Wolfgang: The police officer wasn't actually that bad.

Kathrin: But you were so aggressive!

Wolfgang: I just wanted to escape from the sun into the shade. It was a relief for me, but you felt let down.

Kathrin: I just didn't have any strength left. You can't be seen today, but back then you looked like death. You couldn't sleep at night, there was no understanding at work, you had to go to assembly at times and you cried at home. It was all so terrible! At some point I thought: it's over now, I'm not going to do this anymore! I knew this couldn't be a normal headache. So I ran from one bookstore to the other and read migraine books over and over again for hours. Until I came across the word cluster. The symptoms were in the book: the watery eyes and the runny nose and this restless feeling. I thought: that fits and went to my internist...

Wolfgang: … who referred me to a specialist. For the first time I got a remedy that really helped. I was still having four to five attacks a night, but then I would turn on the light, give myself an injection, and go back to sleep. That was already a huge improvement over what was before.

Kathrin: I then found contact with the self-help group online, and within twenty-four hours they got us an appointment at the pain clinic, where you were given this long-term medication...

Wolfgang: ...that has kept me pain-free for a month and a half now. The previous bad phase lasted seven months. You can imagine what that means for social life! You don't want to do anything anymore and you won't be invited anymore because your friends don't know how to deal with it. Many people want to help and come up with the craziest things. Reyki or distant healing by fax, laying on of hands or laying cards... It's not that you don't try everything possible, but it always depends on who makes the suggestions. In the self-help group we exchange ideas and try the craziest things. The group has created notes for relatives, friends and bosses on which the illness is briefly explained in an appropriate tone. That's very helpful.

I have officially been 30 percent disabled for six months. I tried to talk to my employer about my condition, but he doesn't want to hear about it. The problem is that you can't tell from looking at me. I then take my pack with the syringe, which I always have with me, into the toilet and then everything is fine again. It works within three minutes.

Kathrin: The only positive thing about this misery is that I didn't have time to think much about my own illness. I would rather go through the cancer surgery and all of it again than what I had to experience with you. Seeing my beloved partner suffer was very, very terrible for me. I have never cried as much as I have in these seven months. You really wanted to get out, but that wasn't possible. I have to be honest: in this phase I would have liked to work overtime because I knew that now I would be back in this mill. The worst were the nighttime attacks. Now we are enjoying the pain-free period, but I am very afraid of the next attack.

Wolfgang: This is a big burden for you, I know. I wouldn't have gotten through this without you, and I wish more family members would come to the group meetings. Then you could talk to other people affected.

Kathrin: Of course, the best place to talk about it is in a group. Other people don't want to hear about it. I once tried this with a work colleague with whom I have a very close relationship, but she refused to do so. My husband and I talk about it a lot and try to be enough for each other.

Wolfgang: During the attacks I sometimes thought about our love and tried to console myself with it. Today I no longer have any ambition to jump from the balcony and I have you to thank for that. As long as I lived alone, the despair was greater, as was the thought about what I might have done to be punished like this. When you sit on the bed at night with this pain, the strangest thoughts come: “Why do I have this of all conceivable illnesses? Am I being punished for breaking off contact with my parents years ago?” You help me. I feel at home with you. You mean everything to me. Getting through this terrible year has made me stronger. I'm not afraid of the next cluster phase either, because now I have these injections that will help me.

Kathrin: It’s different for me. The memory of the period of pain is still very strong in me and I am very afraid of the next one.

Wolfgang: You are afraid that the illness will become chronic. Then there is hardly any help because the painkillers I take are not for long-term use.

Kathrin: Frankly, I doubt that you've gotten any stronger. Well, you now have the injections to help you, but you're taking too much. Who knows what they do to the body and whether it will stop working at some point? There is still a lot of excitement in me and I wait every day for it to start again. I still can't believe that you'll be fine for a long time. (Tears come to her eyes). It's so terrible when the man you love feels so bad! I'm grateful that it's been quiet for weeks now, but I'm always afraid it'll start again!