Women with migraine

37 minute read

My vision has become saturated by flashing shapes that look like patches of oil spilt on a tarmac road. They are growing and it is impossible to see. My hands have become so numb that I am frantically biting at my fingers to try and remember what touch feels like. Confused, I stumble anywhere away from the lights, noise and people that have become distorted, I am now trying to talk but no one understands me. This will continue for an hour until my head begins to pulsate in agony and I will vomit multiple times from the pain. This can last up to three days and it will take me even longer to recover. What is wrong?

I am one of the eight and a half million people in the UK that suffers from migraine.

There are 200,000 migraine attacks every day in Britain, with the condition affecting one in five women and one in 15 men. And whilst it is the leading cause of disability for all neurological disorders and one of the top ten – according to the World Health Organization – most debilitating conditions ever, there is no cure for migraine.

Thought to be the outcome of temporary changes in the brain’s blood vessels, chemicals and nerves, migraines are a system defect in the brain and something that just isn’t supposed to happen.

Dr Shazia Afridi is a neurologist at Guy’s and St Thomas’ hospital in London and she says that no one can pinpoint what a migraine actually is. “During an episode, there is a dysfunction of central brain structures involved in the processing of pain and sensory information.”

And whilst little are known about them, they are even harder if not impossible to predict.

Neurologist at the National Migraine Centre and former professor of general practice and primary care at St George’s, University of London, Dr Paul Booton sits opposite me on a round table and describes over his sandwich, the triggering mechanism. “There are a lot of different environmental triggers, which come into the common pathway of the brain, and any of them or a combination of them are part of the triggering mechanism.”

He gestures toward the harsh artificial light above us and the window from which we can hear west London’s traffic.

“The brain spends most of its time being inhibitory, while you are talking to me you are not aware of the lights being on and the noise outside, we cut all that out because it is the only way to live. When you get a migraine, you lose this inhibition and you are flooded with all of these,” he says.

Perhaps more worryingly, medication solely researched and developed for the purpose of treating migraine is rare. But, recently and promisingly, late-stage clinical trials published in The New England Journal of Medicine have offered a potential drug that could make it on the migraine market. It is a monoclonal antibody named, Erenumab.

For Afridi, these could be of significant benefit to sufferers. “There have been some exciting drug developments in the form of monoclonal antibodies, which I think will potentially improve treatment a lot,” she says.

Erenumab takes the form of an injection and is a specially-designed lab-made protein created to target a specific molecule in the brain, in this case the CGRP molecule (calcitonin gene-related peptide), as this is known to affect the migraine process. It is made up of identical immune cells that block the CGRP receptor in the brain, the only drug known to do so.

Phase III of its trials was completed at the end of last year and this was tested on a total of 955 patients. The patients were split into three random groups; the first were given a 70mg monthly dose of Erenumab for six months, the second a 140mg dose and the third were given a placebo.

The result? A 50 per cent or greater improvement on the average number of days affected by migraine per month.

It is exciting to have this new drug on the horizon, but it is still not going to be, if it is even approved, on the market until at least 2019, which means migraine sufferers are still waiting for a cure.

Taking a bite of his sandwich, Booton says, “It’s great to have another agent. But, I suppose what this really represents is, it shows we are only dipping our toes in to the water of migraine neurology.”

One person who knows migraines better than she’d like is 20-year-old student Amelie Iselin. The memory of her first migraine is hard to forget.

She says: “I was six and I was in class and the room was so loud and every noise was agony. I just remember the lights being so bright.”

Amelie Iselin has suffered from migraine since she was six-years-old. Pic: Maddy White.

Iselin offers me a choice of green teas, either one from her trip to Japan or another she picked up at the local supermarket, we both pick the first, as we talk about our shared experiences of the pain and attempting to ‘live’ with migraine.

She says: “It’s horrible because you are in so much pain you want to cry and actually just crying makes it so much worse.” I tell her I understand this, and say that I’ll tend to crawl toward the nearest bathroom, lie on the cold tiles and cry.

At one point, it got so bad for Iselin that she found herself on the verge of a serious accident. Gesticulating to make her point, she says: “I live on the fifth floor of my flat in Paris and I saw a staircase going to the building opposite. I opened my window to step on to the window sill toward the staircase and I snapped out of it, with my foot on the ledge.

“What’s really scary about this is, it’s not like I can lock up my room or my window, because it is still me who can unlock it. I know where I’ll have put the key.”

Iselin in her home in south London. Pic: Maddy White.

Iselin’s story reminds me of a hallucination I had at a friend’s house. I knew I was on the brink of a migraine as I was losing my vision. I was becoming disorientated and numb, when I saw a giant spider, the size of a small dog, scurrying all over me. I was terrified, jumped up and ran out of the room.

It is experiences like these that only migraine sufferers can appreciate. “People who don’t have migraines don’t understand. I go into this zombie state and thoughts that come normally to me, stop coming and I can’t remember things,” Iselin says.

70-year-old Margaret Lammiman sits on her wooden chair in her house in Kingston and explains how she describes migraine pain to others.

Margaret Lammiman in her home in Kingston. Pic: Maddy White.

“I had a big car accident and I fractured my skull, and obviously I had a bit of a headache,” she says, pointing at the right side of her head where she feels migraine pain most. “But, I would rather have that fractured skull headache than any migraine ever.”

Mental health nurse Sophie Stott, 22, is another migraine sufferer. She sits down and explains how migraines impact her life. “It is hours and hours of not doing anything.”

And many people do not even believe migraine is a real condition. She seems frustrated and pulls her hair off her face. “People hear the word ‘migraine’ and they think ‘oh it’s just a headache’. It’s nothing,” she says.

Dr David Bloomfield has been the chief executive of the National Migraine Centre in west London since September 2017. He is a scientist and has previously worked in the electronics industry as well as other senior positions. Bloomfield says the charity is unique and goes above and beyond any other, as they treat their patients and nearly all of these clinicians suffer migraine.

Incredibly, he didn’t used to take migraines seriously at all. “If an employee said they were having a migraine, I would immediately assume they were swinging the lead,” he says with a rueful smile.

This all changed when he personally experienced migraines. He says: “My son lost four years of his life because of migraines and it was quite horrifying watching the decline of someone who was a normal, young teenager into somebody that finished up in a very dark place. I then realised my preconceptions, misconceptions about migraine were precisely wrong.”

When Katie Lloyd, 28, a researcher of gastroenterology at the University of Liverpool started suffering from migraines at university her life changed abruptly.

The condition was crippling, she says. “I only started getting migraines in 2010, when I was in my second year of uni.

“After just a week, I was bedbound. The doctor immediately sent me to hospital where I remained being tested on for eight weeks. It took a whole month – using heavy sedatives – to shift the first headache. The outcome of this was, ‘you only have migraines’ and I was sent back to my GP.”

Iselin too says of how she is tired of people not believing that migraines are a real condition. She says: “I don’t know if people think it is an attention-seeking thing, my dad would always say ‘excuses, excuses’. It’s a big deal and if people don’t have them it is impossible for them to understand.”

And while Iselin’s dad doesn’t suffer, her mum does. According to the NHS over half of people suffering migraine have a close relative with the condition.

Both Iselin and Stott speak about their mums’ relationships with migraine as well as their own. Iselin says: “She apologises. She is like, ‘I am sorry I have handed this to you, I know it is a curse, I am sorry’. She feels so guilty and obviously it’s just knowing she is going through the same thing makes it actually more bearable.

Iselin is pictured with her brothers. Pic: Maddy White.

“I have seen her slowly become a hermit, talking to people and going out is painful. I try to not let migraines be a handicap but it does anyways.”

Stott starts to neaten the cushions on the sofa while she speaks about the shame her mum felt having to admit to migraines. She says: “I remember sitting with her in the kitchen and she was so embarrassed. And I said ‘what are you embarrassed about?’ And she said, ‘I can’t go to work and tell them I am having migraines.’”

Migraines are much more prevalent in women than men. Often triggers are hormonal, caused by puberty, menstruation and menopause.

“Every time I get my period it is hell,” Iselin says.

Even more shockingly Iselin speaks of her extreme reaction to contraception. “I have recently had the implant in my arm and now when I have a migraine, I cannot see, I go blind. It must be linked,” she says.

But migraines can be triggered by many other everyday activities.

She explains while she is not completely aware of every one of her triggers, there are certain obvious ones. “I have lots of triggers, movement-based things like jumping up and down, or if I am going to be in a loud room with strip lighting and music, and of course, alcohol.”

I tell her I was permanently excused from DT in secondary school because every lesson the vibrations from the machinery, even if I was just in the room, would induce a terrible migraine. I tell her the teacher thought I was faking.

She laughs and continues. “Then reading off of a computer screen, I do English so I spend all day reading. Even sleeping in my room without the window open, I’ll wake up with a migraine because it’s too stuffy.”

Stott says she thinks her worst spell of migraines was caused by irregular eating habits, another common trigger according to the NHS. “I was not necessarily eating much, but I’d end up spending several days in bed with a migraine, they used to be awful.”

I tell Stott of one of my most prominent triggers: red foods. Something that experts have said is “bizarre”. Strawberry Cornettos and ice cream triggered the worst ones, every red fruit, strawberry laces, glacier cherries, strawberry syrups and pink wafers, anything and everything red. I became, and still am, scared to go near any of them.

Iselin says of when she relaxes after a stressful period, that this can induce a migraine. “I can feel my body holding one off during a stressful period and then the second I relax, it is a five day migraine, it’s like my body is scheduling it.

“When you start thinking about everything that triggers migraines there is no way you can possibly live a life that is worth living,” she says.

Trying to avoid migraine for a sufferer is not a realistic goal; it’s avoiding everything. What is more realistic is gaining a legitimate medication, which works as a cure. But considering migraine costs the UK economy £3.42 billion ever year according to a report published by the All-Party Parliamentary Group, how likely is that to happen?

Many medications that have been developed for other conditions are used by migraine sufferers. Pic: The Verge, James Bareham and Vox Media, Inc

Migraines have been recorded through history for thousands of years. One of the earliest examples of its acknowledgement dates back to 1500 BC in ancient Egypt, where a description consistent with migraines was written in the Ebers Papyrus – a 110-page Egyptian medical scroll documenting ailments and remedies to them.

Later in 400 BC, Greek physician Hippocrates described the blurred vision and flashing lights [the aura stage] in his work, the ‘Hippocratic school of medicine.’

If migraines are a condition that people have been aware of for thousands of years, how have they been treated historically?

Trepanation, a process documented in the Hippocrates text, involves extracting bone from the skull by drilling, scraping and chipping. The oldest trepanned skulls date back to 10,000 BCE north Africa and it has been widely speculated that trepanation has been used as a remedy for migraine.

In the early 20th century, physician Sir Thomas Lauder Brunton published an article in the Journal of Mental Science suggesting that ancient stone age skulls, with holes drilled into them had been done so to cure migraine.

Either way, trepanation isn’t exactly common practise now, so how are people coping?

From botox to support groups, to preventative measures like beta-blocker Propranolol, to the Triptan drug family, to smartphone migraine apps and diaries, the urgency to try anything that might relieve migraine is ever growing. Sufferers are desperately searching for relief.

Booton explains how he approaches treating his patients. He says: “There are three main prongs; lifestyle changes, getting people to drink more water completely can change the perspective sometimes. Then it is between acute treatment and treating the attack when it happens. If it is more frequent or severe, then using preventative drugs to try and cut down the number of attacks.”

A common treatment used to combat migraine attack is using a Triptan drug, of which there are eight types available on prescription. These were developed over 20 years ago and have been the most recent advancement in migraine specific medication. They do not work to prevent migraines as Erenumab has been designed to do, but rather ease symptoms when a migraine occurs.

Lammiman speaks of Triptan drug, Imigran that she has in a nasal form. She gets up and looks in her cabinet for her sewing box, where she says she keeps everything. “They are preloaded with about a quarter teaspoon of medicine and they taste a little bitter. You take them as soon as you know you have a migraine,” she says.

Stott speaks of the preventative medication she uses, Propranolol. She takes 40mg in the morning and again in the evening. Propranolol is initially used to medicate anxiety, but it has proven effective in preventing some cases of migraine.

She says she also uses the migraine-logging app, Migraine Buddy, she pulls out her smartphone from her pocket and shows me. “It follows your sleep, diet, your fluids and stresses. It is good, but sometimes having a migraine is just unavoidable.”

Iselin says of her strained relationship with medication.

“I know eventually I will have to go on preventative medication, when general painkillers stop working. I know Advil [Ibuprofen] doesn’t work so well for me anymore.”

I tell Iselin how I was excited to try Migraleve, a combination drug marketed to counter migraines. As soon as you are aware of an attack you take two pink tablets and then if the migraine persists, you take two yellow tablets four hours after. Perhaps unsurprisingly, neither tablet eased the pain.

Iselin pauses as she begins to speak of her mum and the problems she has encountered with migraine medication.

She says: “My mum has burnt a hole in her stomach because she has taken so many painkillers and her body is completely immune. All of these drugs she has been given have opium in them and so now she is hooked. There is no way of stopping them, because that will lead to withdrawal and then her migraines will get even worse – it is a very vicious cycle.”

Iselin sips her green tea. Pic: Maddy White.

Lloyd explains of her reliance of sedatives and her trial and error with medication. She says: “I was on sedatives and heavy-duty pain killers when I was discharged, but this couldn’t keep the pain away long-term. I weaned myself off of the heavy drugs, you become reliant on them and then the attacks used to happen all the time.”

Often sufferers will speak to several specialists and try many drugs in order to find the one that might be able to offer some respite, Booton acknowledged this.

“One of the terrifying things is when someone says, ‘you are the fifth neurologist I have seen.’”

Lloyd says of the drugs she had to trial. “I spent most of my first three months out of hospital with a migraine. I tried anti-depressants, anti-convulsants and anti-anxiety medications, but they gave me horrendous side effects.”

And what about the cosmetic treatment that paralyses underlying muscles resulting in nerve-blocking effects, which can counter migraines?

Booton tells me of the first migraine patient he treated with botox. Resting his hands on the table, he says: “She lives just up the road from me and for her, it has completely changed her life. She didn’t have a life before and now, she still gets quite a lot of headaches, but she is out there getting on with things.

“Seeing it with real patients, is so transformative and quite emotional, but it is an expensive procedure and more of a last resort.”

And whilst there are options to controlling the condition, the inadequate research, developments and funding for migraine is just not good enough for these sufferers who have to live their lives in constant pain and judgement. Afridi says the insufficient understanding of migraine has been a contributing factor to the lack of cure. She says: “There is relatively little funding for research as it is often not considered to be a serious problem and as “only a headache.”

Migraine sufferers are optimistic, because with incurable conditions there is no other way to be.

Iselin is one of those positive sufferers searching for an effective treatment.

“I have heard there is progress in curing migraines with the new trials and I’m praying that a cure for them does happen in my lifetime”.

Iselin stands by the window in her apartment. Pic: Maddy White

Erenumab’s double blind randomised controlled study included work by researchers at King’s College London. They say their results “suggest that Erenumab may be useful for the prevention of episodic migraine.”

However, “further trials are needed to determine the long-term safety of Erenumab and the durability of its effects.”

Booton takes a sip of water as he comments on the drug. “The good thing about it is, it looks like it has very low side effects, whereas a lot of the stuff we are using at the moment has very unpleasant side effects.”

He also stresses that he doesn’t think it is a major breakthrough and migraine neurology should be further advanced than it is. He says: “It doesn’t seem to be doing a lot more than what the existing drugs do, in that it affects about half the people who have used it and they get about a 50 per cent improvement.”

The potential practical problems of new wonder drugs like Erenumab cannot be overlooked too. Lloyd says: “From working as a researcher in science, I know the costs of making these drugs and that this will be the major issue.

“Those that get to have the benefit of it, will be broke or lucky – the NHS probably cannot support this.”

How can migraine sufferers accept this? Considering the condition results in 25 million lost working days every year in the UK, the only reason that there is a lack of research and funding is because migraine is not seen as a legitimate illness.

And really, have medical professionals ever done enough, from treating patients to finding a cure?

“Migraines are subjective”, a GP once said to a younger me and too nervous to speak up at the time, I let it slide.

I say this to Sally Flatau and Sally Willis who are sitting with me and Lammiman. Flatau looks irritated at this suggestion and says she had to quit her job and now works from home because of the disruption of migraines to her life.

“It is not subjective at all, that GP needs to be struck off. That is not okay,” she says.

Lammiman picks up her tea and a digestive biscuit as she talks about previous sufferers she has known and the continual lack of treatment choice. “There were people before that I knew that used to have an injection of Ergotamine. It was the only thing they had then.”

Ergotamine’s side effects at low doses can cause nausea, and at higher doses can result in high blood pressure and vasoconstriction. This can cause serious conditions like stroke, as it damages the brain’s blood vessels by causing them to narrow, leak and rupture.

Lloyd is cautiously hopeful on the idea of wonder drugs and supposed medical breakthroughs. “From a researcher’s point of view, complex conditions particularly ones involving the brain, are difficult to explore because the research we are doing is adding to our understanding.

“Medical breakthroughs come like buses, there are none for ages and then loads will come at once.”

Erenumab, while promising, will need to be further tested until its efficiency and side effects can be licensed by the European Medicines Agency, then assessed by the National Institute for Health and Care Excellence and then eventually be made available on the NHS, providing it is viable and its cost is not too high. And how long could that take?

Until this happens or more intensive research that results in a resolution is done, the many women who have spoken up about their condition will have to live with the stigma and incurable condition that is migraine. Something that reduces quality of life, is completely disabling and isn’t understood or even sometimes acknowledged by medical professionals.

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