The industry of pain: Living with migraines in Berlin

Some women never leave home without a tube of lipstick. Marcela P. never leaves her Berlin flat without triptan pills. “The mere thought of a migraine attack and no tablets makes me panic. I often switch handbags and I was afraid I’d forget them. So I now always carry them in my wallet. It’s safer,” she says, extracting a packet with a single pill from her black leather purse.

The 37-year-old Argentinean designer is one of the 16 percent of Berlinerinnen – and women in the western world – who live with migraines. Like many cases, it started in her twenties (“More or less when I arrived in Berlin”), with a couple of low intensity spells a month. “They weren’t that bad. I got by with some tablets from Argentina.” But soon the headaches got more severe and frequent, with typical splitting, throbbing pain and accompanying nausea. “I lay in bed, unable to sleep, nauseous as hell. And the pain: I just want to cut my head off. There’s this feeling of impotence: there’s nothing, nothing you can do and that really makes you feel twice as miserable.”

Once, the pain was so bad that she had to rush to the Prenzlauer Berg Poliklinik, where she was prescribed her first triptan. Fifteen years and some 800-plus attacks later, Marcela swears by her pills, but feels anxious because of her dependency on them. She currently takes Maxalt Lingua at a rate of eight a month. “As long as I have one, I’m fine. I just need to take it right away to abort an attack. But every time I do, I feel a bit guilty, a bit like a junky.” She usually pops her pill out of people’s sight – even close friends’. “It’s funny, I don’t mind if someone sees me take a period-pain tablet, but triptan… People don’t understand. I don’t think they see it as a real disease.”

Because of the impact it can have on quality of life, the World Health Organisation lists migraine as one of its 20 most debilitating conditions. More than nine million people in Germany, mostly women (though it could be under-diagnosed among men), are thought to suffer from the disease, making it more common than diabetes and asthma combined. It also means big business for pharmaceutical companies: the worldwide market for anti-migraine drugs is worth billions of euros.

Secret pain

Anna, a mother of two with a Dutch accent and a career in publishing, shares Marcela’s predicament. Now in her late thirties, she feels totally incapacitated by migraine attacks – up to 14 a month. “Migraines are ruling my life – like a tyrant. You never know when it might erupt and when it does, you can only surrender. My life is a mess, whether it’s work, kids or even my love life. I’ve come to the point when I can’t make plans.” Yet, like Marcela, she feels uncomfortable about her condition and tries to conceal it from the outside world. “I try to never call in sick, and if I have to, I’d rather invent another reason. I don’t know why, but I just can’t stand the idea of hearing myself say, one more time: ‘I have a migraine.’ So often, despite the pain, I keep going as if nothing was happening for as long as I can. I’m good at it! Often my colleagues don’t notice anything.” Although there are no statistics for Germany, American surveys found that in the US, a total of 157 million working days are lost annually due to migraines.

While sufferers might try to hide their condition from people ‘who don’t know’, they share with fellow sufferers. Support programmes have mushroomed in Europe and North America. In Germany, the MigräneLiga set up a network of around 100 self-help groups to provide non-medical support. In Berlin, there are two of about 100 members in total in Pankow-Prenzlauer Berg and Treptow- Köpenick. “Migraineurs”, as they’re known, develop an unspoken solidarity. “Although I hate the idea of being defined as such, and I’m not part of a self-help group,” says Anna, “I immediately feel empathy with other sufferers. I once read that Cindy McCain was a migraineur and had hidden her condition from her husband: I immediately felt sympathy for her.”

Doctors or dealers?

With the number of sufferers soaring, headache clinics staffed by migraine experts have opened up in most big western cities. In Berlin two hospitals, Charité and Sankt Gertrauden, offer this service within their neurology departments; the Schmerzzentrum (“pain centre”) in Prenzlauer Berg also treats a large number of migraine sufferers. All have endless waiting lists. It takes six months to get into Charité’s outpatient clinic, and it can take two or three months to get into the Schmerzzentrum (unless you’re privately insured) – provided you manage to reach someone on its hotline.

When a migraine sufferer finally gets to see a “specialist” in such a facility, it’s often pretty underwhelming. They are usually told that there’s no cure for migraine. Yet the doctors seem especially fixated on prescribing expensive pharmaceuticals. The problem is, no one knows how migraines work. According to Uwe Reuter, a neurologist and the director of Charité’s headache centre, “We know what happens within the attack, but we still don’t know exactly what causes it. In 85 percent of cases, we do not know on a biochemical, genetic level, what causes it: we have no idea.” This lack of understanding explains why no single medication has been developed to cure migraines. All neuroscience can do is treat the symptoms and, 75 percent of the time, successfully abort the pain during an attack.

“Neurologists are the specialists and all they do is give you triptans,” sums up Anna. The first triptan (“sumatriptan”: brand name “Imigran”) was developed by the pharmaceutical giant GlaxoSmithKline and went on sale in the early 1990s. As the first migrainespecific painkiller with few side effects, it revolutionised treatment. Now in its second generation, there are seven formulas and eight brands fiercely competing for a highly lucrative market. GlaxoSmith-Kline is the world market leader with Imigran. All the pills are expensive prescription drugs with the exception of Formigran (also from GlaxoSmithKline) which, as an over-the-counter drug, is not reimbursed by the Krankenkassen.

In the 10 years she’s lived in Berlin, Anna has seen five different specialists and been prescribed four different triptans. They differ from one another only in speed of action and length of effect. Right now, Berlin-Chemie’s Allegro (€50 for six pills) is all the rage: both Marcela and Anna have been prescribed it. “It seems the ‘Made in Berlin’ label is cool in all things – even for anti-migraine tablets!” Anna says.

Migraine for dummies

Anna gets her prescriptions from the Schmerzzentrum. “They are a bit like my regular drug dealer,” she says with a laugh. The Schmerzzentrum – a slick, three-storey clinic staffed by young doctors and trainees in red t-shirts with the word “CREW” on them – provides support for chronic pain sufferers, and this mainly takes the form of medication. According to Anna, “Once you’re in as a patient, they keep you coming.”

Patients are encouraged to visit once a month for a chat and a new prescription. Basically, it’s a long-term subscription-based business model whereby everyone profits (the doctors, the pharmacists, the drug companies) probably more than patients themselves. Anna is disillusioned by what is supposed to be the top level of pain care in Germany: “At your docile monthly visit, you’re supposed to bring your homework – a migraine diary, dutifully filled out day after day – and listen to the usual migraine-for-dummies lecture you’ve heard dozens of times before. Provided you don’t sound too knowledgeable or challenging and let them feel they are in charge, you get anything you like: codeine, antiinflammatories, triptans… anything!”

From drug use to drug abuse

A real curse for migraineurs is that overuse of painkillers tends to feed migraine cycles. “They’re happy to prescribe you all the triptan you like as if it were a panacea, but they forget to warn you not to take too many. My first-ever visit to Charité ended in chronic hell. I had to go clean before starting again with any painkillers at all. Now I don’t rush to take my triptan – but, the more I wait, the less effective it will be… you’re damned if you do, damned if you don’t – that’s the sad and lonely condition of the migraineur.”

Yet the two neurologists we talked to at Charité were fully aware of the problem. As Reuter says, “It’s one of the main problems for people who suffer from a lot of attacks. The earlier you treat the attack with the triptan, the better it works: if you take it too late, it doesn’t work well. But if you take triptans or other painkillers too much, they can cause headaches that are equal to migraine headaches. Everyone who suffers from frequent migraines is threatened by drug abuse.”