My migraines follow a certain pattern
Veronica, 51 years old:
“During an attack I’m extremely sensitive to light and noise, and can’t stand being touched. I won’t even let my husband stroke my arm, I just can’t take it. Odors also bother me.”
Even as a child I used to have headaches now and then. At the age of 16 I had my first migraine. I had the most frequent and most severe migraines between the ages of 25 and 30. After that, things got better for a while and I only had them about once every six months, but then they gradually became more common again. I’m now 51 years old and have migraine attacks about once a month, around a certain time in my menstrual cycle.
When the attacks were less frequent they were more severe than usual and I even went to the hospital a few times because I couldn’t stand it. Since becoming more regular, they’re less extreme and I can deal better with the pain.
Attacks can rob you of your time and energy
I usually have migraines on the weekend, from Friday evening to Monday morning. My weekends are always wasted – I can’t stick to my plans and I don’t get any rest. It’s really draining. I feel like I’m wasting my life in bed because of the headaches. That really gets me down. Another distressing thing is being scared of something inside my head going wrong or bursting, and wondering whether to call an ambulance or go to hospital. It’s terrible feeling so helpless and not being able to influence anything. For a long time I couldn’t believe that it was just a headache and worried that I might have a brain tumor or something else.
My migraines follow a pattern
My migraines follow a certain pattern and I know exactly when I’m going to get another one. About a week before I have my period I feel extremely tired, I yawn a lot, my eyes water, I feel hungrier and so I eat a lot, have no control over it. I don’t exactly have a headache, but there’s a feeling of tension in my head and I feel really groggy. My whole posture changes and I tense my shoulders. It just happens and I can’t do anything about it. That’s how I notice that it’s starting again.
My migraine attacks usually last about two days, or three days in bad cases. There's no general rule about where the pain will occur. Sometimes it’s on one side of my head and sometimes it’s on the other, and another time it will switch during the course of one migraine attack. It always used to start at the front of my head, but now it often starts at the back of my neck. It then gets so bad that I can hardly move my neck.
During an attack I’m usually extremely sensitive to light and noise, and can’t stand being touched. I won’t even let my husband stroke my arm, I just can’t take it. Odors also bother me. If the neighbor downstairs is smoking and I have the window open, I feel sick. I already feel nauseous anyway, and that just makes it worse. Sometimes I sleep sitting up because lying down makes it hurt even more.
I’ve already tried out quite a few things, including acupuncture, medicine, and massages. But I simply can’t do everything – or pay for everything – that others advise me to try, ranging from pendulums to yoga, Tai Chi, acupuncture and new diets. If I tried out all of that, I wouldn’t have any time left over for other things. There’s also a lot of pressure. I feel like I have to explain myself if I don’t try things that have helped others. The only thing that actually helps me besides taking painkillers is waiting it out.
Last year I went to a pain clinic, as recommended by my neurologist. I expected to be given a complete physical examination there. I also thought I’d be prescribed new or different drugs. I had sort of lost track of which painkillers I was taking, and when. I often took the wrong dose – sometimes too much, sometimes not enough – and overall I took a lot of painkillers.
My stay at the clinic was a real eye-opener. First of all, they helped me to quit the painkillers, and I stopped taking all of my tablets. I wasn't allowed to take any painkillers for almost four months. A completely new experience for me! That made me realize that I wasn’t dependent on the drugs. And also that I can control a lot myself, even without medication.
Taking time out and relaxing
Nowadays I think differently about my migraines, and I also have a different way of coping with them. For example, I no longer make any plans when I feel a migraine attack coming on. I tell myself that I’m allowed to stay home and don’t put myself under so much pressure anymore.
I never really drank a lot of alcohol, but whenever I did, I got a migraine. That was a major trigger for my migraines. I now hardly drink any alcohol at all and feel a lot better! That was an important realization for me. I now have a little more control over my migraines.
Relaxation and meditation techniques also help me feel more in control. I try to keep reminding myself that I don’t have a tumor and that nothing will burst inside my head. It helps to know these things! At the clinic we also learned about the different stages of pain, and I go through them in my head when I’m in pain. Doing sports helps too, especially endurance sports. I go to the gym regularly. Getting fresh air does me some good, but doing sports helps me the most.
I’m very glad that I now get on fine without tablets. They always affect my circulation and it’s like I’m on drugs, which is scary. It gives me the feeling that I’m no longer in control of my body. And the tablets often make me feel sick. But I make sure that I don’t get too ambitious about avoiding medicine, and still take tablets if the pain gets too strong.
At home I always have a first aid kit with medicine at the ready. Peppermint oil helps me, so I make sure there’s always some of that in there. When I’m not feeling well, I know where to find things.
When I notice a migraine attack coming on I now think: “You don’t have to do anything, you can cancel everything, you don’t have to go anywhere. You have no obligations or duties.” That sounds so simple, but it actually isn’t that easy to say: “No, I can’t,” and actually follow through on it. It feels good whenever I manage to do that.
Back then I would really put myself under a lot of pressure. I always used to tell myself: “Take a deep breath and just get on with it!” I also still went to work even when I had a severe migraine. I often almost passed out, but I was always able to somehow grit my teeth, although I could hardly stay on my feet. I didn’t want people to notice how much pain I was in. And in the evenings I would fall into bed feeling exhausted. I was completely drained. But I’ve stopped doing that.
I now try to have more quiet time. Sometimes that works pretty well. But I feel especially distressed when I have migraines at weekends or on vacation. That sets off a spiral of thoughts in my mind: Why now? Why me? I keep having to remind myself to say “stop!” in time and then to accept that I can’t do anything about it. That involves a lot of effort, though.
You can't see pain
My husband is always very worried when I have migraine attacks. He’s very compassionate. But he can’t really help me. My mother is the complete opposite. She’s tougher and less understanding. Instead, she says it won’t kill you, and it will pass. That’s even less of a help. But it’s hard for your friends and family to know what to do.
I simply need someone who is there for me. That’s difficult for others to understand, and I find it hard to describe. Each person perceives pain in a different way. That’s what has always bothered me about this condition: you can’t see the extent of pain involved. It’s not like having a bruise that everyone can see.
I always do all I can to prevent people at work seeing that I’m in pain. I’m pretty good at it. I don’t want them to know about my migraines. I’m not sure if it’s a good idea. But I usually have the attacks on the weekend so I work until Friday and then go back to work again on Monday.
The important thing that I learned during my time at the clinic was to just let go and accept. Don’t fight it. Balance out the pain by meditating, for example. In the past I always used to get very upset about having to cancel my plans, would struggle to accept things and feel sad. I’m trying to change that: I do activities that are good for me, or I just lie down for a bit. But it’s still difficult for me to admit that I have migraines or that I’m not feeling well.
I found it very hard to accept that migraine attacks are a part of my life. I think it’s important to find a middle path: to actively seek treatments that help me, and to simply accept the migraines.
Our real-life stories summarize interviews with people who are affected by the medical condition. Our interview partners have given us permission to publish their stories. We would like to express our sincere thanks to them.
The real-life stories give an insight into how other people cope and live with a medical condition. Their opinions and comments are not recommendations by IQWiG.
Please note: The names of our interview partners have been changed to protect their identity. The photos are of models.