I know the next phase of attacks is on its way, and that will pass too

I went to see an eye specialist, ENT doctor and dentist. I had a tooth removed because the doctor thought that was the cause. But the attacks kept coming. Then they said it might be a tumor, and after that they thought it might be AIDS. But all of that was ruled out. I still didn’t know what I had, though.

By chance, my mom then saw a TV report about someone with the same symptoms. The next day, I went to the local hospital to see a neurologist and have it checked out. He diagnosed cluster headaches straight away.

They kept me in the hospital to work out which medication I needed. That helped me at first.

Then the attacks got worse. At one stage, I was having an attack every night at about 12:30. My dad often had to take me to hospital in the middle of the night and pick me up again in the morning. At the time, I only had small oxygen cylinders at home to treat the attacks, about the size of diving tanks. But that wasn’t enough for me, so I often didn’t have enough oxygen at home and had to go to hospital. They would put me on a drip and then I felt better.

I was later given bigger oxygen cylinders and other medication, too. That was better.

Over time, the phases took on unbelievable proportions. For instance, one particular phase lasted three years, with attacks every day. I was using about 5 to 6 cylinders of oxygen each week. And at some stage it went away and I felt fine again. Then I had another long phase of attacks like that, but the last one only lasted a couple of months.

I have episodic headaches. That means I have long phases where I don’t have any headaches until a new cluster headache period starts. The cluster periods are irregular. In other words, the phases without headaches last different lengths of time.

It's not clear what causes my cluster periods. The only thing I know is that alcohol is a trigger for me. I mean alcohol in any form, even in chocolates. We went to a restaurant once and I had fish in white wine sauce. I had to go to hospital after that.

At first, I tried using the nasal spray when I had an attack but that didn’t work at all. I found it really unpleasant. I was then given a different spray that I always have with me for emergencies.

But I use oxygen if possible. That always helps me. I usually have three cylinders at the ready: one in use and two for emergencies. The oxygen starts working really quickly. The pain is gone within about ten minutes. I don’t worry then. I know it will help.

I tried some other approaches here and there, like treatment in a naturopathic clinic. But nothing ever helped, other than the oxygen and the nasal spray.

I think it’s important to see a headache specialist. There are now specialist headache doctors and clinics. The disease is still quite unknown, even among doctors.

Support groups are very important to me as well. It's good to know that you’re not alone with this problem. Talking to other people helps.

When I have a headache-free phase, I know the next phase of attacks is on its way. And that will pass too. That’s how it will always be, and I can live with it.

It has become much less distressing for me now. At first, I found it very hard to not know when the headaches will go away again. But I don’t think about that anymore. My cluster periods may last three months, a year or longer. I never know. I don’t think about it anymore.

The disease does restrict what I can do in life. For example, it’s quite a hassle to always have the medications and oxygen cylinders with me, when I go on holiday or am traveling elsewhere.

The mental strain affects my relationships, too. Some of my relationships ended because of it.

I had a very understanding employer for a long time. They allowed me to go and sit in the car and have a sleep if I had an attack during the day. If I had an attack at night, I often went to work about two hours later than usual. If possible, I reduced my working hours. I had always done a lot of overtime so I could use some of that up. If I wasn't able to work at all, though, I would get a sick note from the doctor. We had a great working atmosphere there! But the company was sold at one point and I struggled to find a new job.

Because I usually have the headache attacks at night, I'm often awake at night and sleep in the morning. And because you don’t know how long a cluster period is going to last, you can’t say when you'll be able to return to work regularly again and when you’ll be off work again. Everything is totally normal between the cluster periods, but then you're off again for half a year or more because of the headaches. It's really frustrating.

After struggling to find a new job, my doctor recommended that I apply for a pension. That went pretty quickly, and I'm now retired.

Since then, I've had three long phases of attacks lasting almost 1.5 years each. The last severe attack was 2 years ago. I’ve been fine since then.

Other people in my life have got used to my illness. I talked openly about it with my family, friends and in my sports club. That made everything much easier for me. I didn’t have to hide anything. Of course, it isn’t always easy. If push comes to shove, you just have to distance yourself from people who aren't interested or can’t accept the restrictions the illness brings with it.

I’m a member of a sports club and was the president for a number of years. I actually wanted to step down when the illness got worse. But the members wanted me to carry on. We then reorganized the club a little, so I could still run it despite my illness.

Living with the uncertainty and the restrictions is, of course, frustrating. I can never say for sure whether I’ll be able to go to parties or other events. That’s not nice for the people planning them, or for me. But it’s simply not possible to plan ahead because I don’t know when the next cluster period will start.

I try to enjoy the pain-free phases more nowadays. I do a lot of Nordic walking. I play chess and tend to my house and garden. I do a lot with my friends and get on well with my neighbors. The people around me are very understanding. I'm really lucky in that sense. People leave me alone when I have my attacks. That all works brilliantly.

It makes it easier for me to accept that I can’t travel as much as I used to. I still went abroad to tournaments with the sports club the last few years. I always had my oxygen cylinder with me. But I haven’t flown for more than ten years. I don’t really miss that, though. I've got used to the idea of not traveling as much anymore. It is what it is.

It takes a while for you and your loved ones to accept that you have this illness and that there's no cure. Once you've come to terms with it and accepted it, you can rearrange your life a little. It is possible to live with this illness.