It must have taken about two years to get a diagnosis

I then went from one doctor to the next. I wanted to find out what I had. Eventually my current family doctor diagnosed cluster headaches and prescribed a painkiller that you can use as tablets or a nasal spray. I was able to manage the pain a little with them.

But it must have taken about two years to finally get that diagnosis. The form of cluster headaches I have probably made it more difficult to diagnose them: I have episodic cluster headaches. I only get them during a certain time period every year, lasting about 2 to 3 months. The rest of the time I don't have any headaches.

After getting the diagnosis, I read up about the illness a bit. Not too much because otherwise you drive yourself crazy. And I wanted to gain my own experience.

I can sometimes feel an attack coming on. I then often have a very slight headache or feel a little jittery. Then I wonder whether I should take something so that it doesn’t get too bad if I do end up having an attack. I don't want to take the medication too often. So I sometimes wait a little.

It's fine when I'm at work because I'm distracted there. But at home I can't stop wondering whether an attack is coming or not. Then I always say to myself: Something's knocking at the door, let's see if it comes in.

The pupil in my right eye sometimes gets smaller before an attack and my eye turns red. I often don’t have any pain yet at that point. My wife often notices it before I do and asks if I'm having an attack or am about to get one. Then I try to run ice cold water over my temple – or lay my head on the corner of our cold marble sink, holding my eye against it. The cold sometimes helps.

The strength and length of the attacks vary each time. They may last 20 minutes, or even up to three hours. Some attacks struck during the day, and others came at night. By the end, I didn’t know what was going on at all. I don’t know how an attack will be when it starts. Sometimes they happen during the day, sometimes at night. The only constant is that the pain is always on the right side of my head.

The pain feels as though somebody is pushing a knife into my right eye from inside my head. My nose is then blocked and the pain sometimes spreads right down to my jaw. That feels a bit like toothache. It affects the whole right side of my face, which turns bright red. You can literally see a dividing line down the middle of my face. My nose is often runny and my eye waters when I'm having an attack.

The right side of my face goes red in the same way when I do sports. I do a lot of cycling, and if I'm really pushing hard the right side of my face turns bright red and the other side is completely normal.

Unfortunately, I don’t know what triggers my attacks. But I've tried all sorts of things – like changing my diet, for instance. Other people had told me that they had fewer attacks after changing their diet, and the attacks were shorter too. I thought it would be worth doing, even if it only provided a bit of relief. We started cooking other types of food. But the attacks stayed the same, nothing changed at all. I guess everyone reacts a bit differently.

I've also tried to avoid situations where the intensity of light changes, like when driving down tree-lined streets, and I only used special toothpastes. None of that helped.

Of course I try to figure out whether I did anything out of the ordinary before an attack started. I often retrace my steps like that. But I normally can't pinpoint anything unusual. I've never found that particular foods or drinks, or any other factors, trigger the attacks. I get the impression that I don’t have any influence on things. Because I don't know what causes the attacks, I just have to live with them for now.

I have a small portable oxygen cylinder that I always have with me at work as well. And a big one at home. If I feel an attack coming on during the day, I try to breathe the oxygen straight away to fight it off a little. But if I wake up at night because an attack is coming on, injections are more helpful. Sometimes I simply have to experiment a bit to see what helps most.

The doctors have told me that I shouldn’t use the injections or nasal spray more than 2 to 3 times per attack. But sometimes that just isn’t enough.

I don’t get any side effects from the oxygen. At first I was worried that my body might get used to the medications and then they wouldn’t work anymore. But that hasn't happened yet, thank Goodness.

My employer is very understanding, and I told him about the cluster headaches straight away. But nobody had heard of them, like I hadn’t either. If you tell people that you're off sick because you have headaches, a lot of them say that they sometimes have headaches too but wouldn’t stay at home for several weeks because of them. Then I explain in more detail, and have even sometimes given people my doctor's number so they can get more information.

I try to carry on going to work for as long as possible. Sometimes I only sleep for two or three hours during an episode and am awake for the rest of the night. And then go to work early, for as long as I can manage. But if my employer notices that I keep using nasal spray or injections during the day, he approaches me about it and sends me home. He also knows that I’ll come back to work as soon as I can, though. I work for a company with a very caring culture. I'm really grateful for that.

I have learned to cope with the cluster headaches. My family had to get used to them at first, too. I feel quite anxious during the phases when I have the headaches. It’s okay at the beginning because I still have the strength to put up with the pain. But after a while I have trouble sleeping, feel restless and often become irritable. Then I tend to get worked up about small things that wouldn’t normally bother me. It doesn't take much. My wife and children often bear the brunt of that. I then feel bad about it in the evening.

I’ve been living with cluster headaches for 16 years now. I try to stay on top of my family life, work and other activities while at the same time managing my headaches.

I think it’s important not to drive yourself crazy. And to get to know your body. To find out how it reacts, and how best to deal with that. I always take things as they come. And if necessary I talk to my doctor about it.

You shouldn’t believe everything you read on the internet, either. People who feel desperate enough may end up spending a lot of money on useless things. I wouldn’t do that. It’s important to find a good doctor who knows about cluster headaches and who you can trust.