Photo by Tamsin Ross Van Lessen
Over 10 percent of Berliners – 16 percent among women – suffer from migraines. They are trapped in a cycle of debilitating pain, inadequate treatments and closed minded doctors. Meanwhile, the drug companies thrive.
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.
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.”
Preventative meds: ‘side-effect drugs’ with side effects
If you’re a chronic, acute sufferer (at least five to eight attacks a month), your doctor will probably recommend “prophylactic” treatment, which is supposed to prevent migraines from happening in the first place. Patients are encouraged to experiment with a potpourri of drugs that were developed for other conditions, such as epilepsy or high blood pressure, but that, for some still-unknown reason, have positive ‘side effects’ for migraineurs. On the menu: beta blockers or calcium channel blockers (which lower blood pressure); anti-epileptic drugs (anticonvulsants); even anti-depressants
In Germany, where anti-depressants are generally regarded as second rate, doctors usually prescribe beta blockers or calcium channel blockers first – a procedure required by the health authorities. Why? Because, although these drugs have a similar (limited) effect, some are cheaper than others. Reuter’s colleague Lars Neeb, a neurologist and researcher at Charité, says: “The drugs you need to treat migraines right are rather expensive. Sometimes some doctors might have difficulty prescribing some medicines [like the anti-epileptic drug Topamax] because they’re on a budget.”
As her heart was too weak for beta blockers, Anna was prescribed Topamax. “An anti-epileptic drug? It sounded scary. When I asked my doctor about it, he said, ‘Don’t worry, it’s only small doses that might cause memory loss, mood swings and concentration problems – but you’ll lose weight’: two to four kilos without lifting a finger. Isn’t that every woman’s dream?” Neeb says it’s not as bad as it sounds: “The most severe sideeffects are that about 10 to 15 percent of people suffer from concentration problems and mood changes, and they can sometimes be aggressive or sensitised to noise. This can be difficult. But it’s no worse than what happens with beta blockers, or anything.”
Natural treatments off the German health radar
Anna shied away from taking anti-epileptics or antidepressants – the two options offered her for longterm relief. That didn’t make her doctor happy. “When I told my ‘dealer’ I wouldn’t go for it, he took it as a personal affront. He became really passive-aggressive and obliquely referred to ‘people who don’t want to do anything to get better.’” On the other hand, Anna’s specialist was totally reluctant to prescribe her magnesium and vitamin B2 (“riboflavin”), harmless supplements which are said to significantly reduce migraines. “He said he’s had a bad experience with them. But he didn’t even know the dosage. I had to insist to get a prescription!” Anna’s doctor clearly hadn’t read the US bestseller What Your Doctor May Not Tell You About Migraines, which recommends a triple natural therapy of feverfew, riboflavin and magnesium.
Yet the Charité specialist Reuter acknowledges there is potential: “There’s good data about riboflavin. A dose of 400mg twice a day helps reduce migraine attacks by 40 to 50 percent and there aren’t really any side effects. The only disadvantage is that it isn’t covered by insurance. A small study a few years ago showed feverfew – natural aspirin – was helpful. But the company that produced it went bankrupt.” Neeb blames healthcare reforms and cost-cutting: “We used to prescribe magnesium and vitamin B quite a lot before, but we can’t anymore. People have to buy it for themselves. The Krankenkassen don’t pay for them now.” Similarly, Pestwurz (Petasites), another herbal treatment, was available and recommended by neurologists in Germany as an effective preventative until it was suddenly taken off the market a few years ago. It is now only available online from the UK.
For Anna, it’s a bad joke. “They never, never recommend natural medication. They’re happy to prescribe the neuro-chemical artillery with side effects and limited efficacy, but in good conscience they absolutely cannot recommend plants with no side effects... because they are not reimbursed?! The other main reason, they say, is that there are no serious clinical studies to validate their efficacy.” Neeb candidly acknowledges the problem: “The pharmaceutical companies do the big studies and none of them are interested in a big study on magnesium. They can’t earn money with it.” But can’t doctors be a bit more open-minded? According to Reuter, the system might be to blame: “The GP or neurologist who has his own practice is not paid for talking to a patient and giving advice. That’s definitely a flaw of the German healthcare system. Also, I think that most of them don’t know about all the non-pharmaceutical drugs.”
Natural healers or charlatans?
Frustrated by conventional medicine, desperate migraineurs looking for alternatives are easy prey forcharlatans or ‘miracle’ remedies. From chiropractors to osteopaths to acupuncturists to non-descript natural healers. But can they help?
“I was so sick of neurologists,” Anna says. “When a friend gave me the address of a natural practitioner in Geneva who cured a few people she knew, I didn’t hesitate for long.” The man was pretty dogmatic and very self-confident. Nine visits in 12 months with 100 percent success, he boasted – provided Anna followed his diet, which consisted of eating an unlimited amount of food as often as she felt like it. “It sounds crazy, but I really wanted to believe in it.” The result? A year and a half and some €3000 later, Anna’s migraines are worse than ever. “Those roundtrip flights to Geneva bankrupted me. But apart from that, and a few extra kilos from that diet, there were no nasty side effects!”
Hopelessness turns one into a sucker for miracle treatments. The weirder, the better. Anna explains: “I even caught myself becoming superstitious, trying to identify lucky garments, bags or a pendant. My experience with food is pretty similar.” American websites provide endless and often contradictory lists of ‘trigger foods’, from smelly cheese to avocado and fish.
The crackpot schemes Anna has followed include the “Alkaline Diet”, which involves green veggies at every meal and a bell pepper for dessert, or the “Blood Type Diet”, according to which she was supposed to eat beef but not lamb, avocado but not artichokes. Marcela is currently on a gluten-free diet… The only thing doctors and patients seem to agree on is that dark chocolate and red wine do trigger migraines.
Oliver, an American architect and Berlin bar owner who has suffered from migraines since childhood, is one of the lucky few who discovered his own cure. When he gets the first signs of an attack (otherwise known as an aura, in his case: flashing lights in a zigzag pattern crossing his field of vision), he immediately drinks several shots of vodka, soon followed by two double espressos – and stops the migraine in its tracks. But the 37-year-old is among a small minority who suffers from optical migraines, a type of migraine with aura but no pain. His technique is unlikely to help the majority of migraineurs.
A plastic surgeon to the rescue?
When we last talked to Anna she felt she “had run out of options.” She had crossed the path of Dr. Thomas Mühlberger, a German plastic surgeon who offers a controversial surgical technique purported to cure some migraine sufferers: the corrugator muscle in the forehead – which is pierced by the transgeminal nerve, known to play a role in migraines – is paralysed with Botox, and if this proves successful the muscle is removed in a minor operation. Mühlberger claims great results, but stresses that not everyone is eligible.
Anna had received her first €450 Botox shot above her eyebrows a week before, couldn’t frown any longer and was full of hope. “If you ask me, it’s no more controversial than the drugs. I liked the guy’s attitude: he sounded much more in sync with migraineurs than any other specialist I’ve met so far. He talks to you as if you were a grownup, and takes the time to explain his method. It was refreshing!” So refreshing she doesn’t mind that there is only a 50 percent chance the treatment will work. “That’s actually not that bad for a treatment with no side effects.”
But the experts at Charité warn against the treatment. Neeb cautions that the placebo responses in migraine treatments are very high and the placebo effect is higher the more invasive the treatment. The existing trials suggest the patients treated are preselected as placebo responders with the Botox-test. “All in all, you can conclude that the trial does not provide enough evidence to recommend this treatment, which has potential operative risks and high financial costs (€4,000)”.
His colleague Reuter is even more sceptical: “I think it is ridiculous. Clinical trials which have shown surgery to be successful do not hold up to rigorous scientific validation. There are two studies, both published in the Journal of Plastic Surgery: they are not published in a neurological journal, not published in any high-standard scientific journal. They’re very subjective.” Anna has not told her migraine doctor about the Botox shot. “I will if it works. Just to see his face.” In the meantime, she’ll keep on going to him for her monthly fix.
A light at the end of the tunnel?
When neurologists say migraines are incurable, it doesn’t mean they don’t sometimes go away. Neeb says he has observed radical change in some patients. “Like all chronic diseases, it’s not curable. But it usually stops at a certain point in your life, sometimes with retirement. With women, it’s usually when they go through menopause.”
For Penelope, a successful Greek writer living in Berlin, the ‘miracle’ happened in her forties, after two decades of misery. During her most active years, she often fell victim to migraine spells which she experienced as ‘real punishment’. “Most terrifying was the point when I understood that it was there, it was going to get worse and there was nothing I could do to stop it. There’s a narrative of the pain you’ve stored inside and it is terrifying.” Yet she never succumbed to prescription drugs – just over-the-counter painkillers and patience, until, like 80 percent of women, pregnancy gave her some respite.
Finally, when she moved to Berlin, she decided to tackle the problem head on. “I was so terrified that for the first time in my life, I started to become disciplined.” She read a lot, started to drink 1.5 litres of water a day, to exercise, to do yoga and “to remember to breathe”. She tried alternative treatments like the Grinberg Method, which she experienced as “psychotherapy for the body”. She took vitamin B supplements. Three years of effort paid off: Penelope now feels better than ever before, with “maybe six migraines a year – that’s bearable”. She still keeps away from cheese, red wine and dark chocolate.
“Incurable” means that when migraines do subside, it’s never thanks to drugs. Paradoxically, pharmaceutical companies and pain practitioners are thriving on ‘treating’ migraines, exploiting an exploding market. “Altogether I spent €10,000 on migraine treatments in the last two years, 70 percent of which was paid by my private insurance, and I’m not counting the Botox,” says Anna.
In their desperation, migraineurs fall prey to a system in which profit seems to mean more than the actual welfare of the patient. “It feels so crazy that in 2010, no one has come up with a cure. Until they do, maybe the doctors should be a bit more humble, go easy on the pharmaceuticals, and listen to us more. Could doctors actually learn from their patients?”