Friday, 28 June 2013

Cindy McCain on Migraine: 36 Million Campaign

Cindy Lou McCain, wife of Senator John McCain, has had a well documented history of health problems. Not many know, however, that she has - for more than 20 years - suffered with migraines.

She recently appeared on The Today programme to launch the 36 Million Migraine Campaign, with The American Migraine Foundation, with the hopes of raising money for migraine research. The idea is that if each of the estimated 36 million migraine sufferers in the USA, or someone who knows or cares for them, gives just a $1, then a substantial sum of money will have been raised for research. Maybe we should launch an 8 Million Migraine Campaign here in the UK!

You can watch Mrs McCain here, or below, the segment also features another sufferer who has found some relief via Botox. What do all think?

Visit for breaking news, world news, and news about the economy

Coming up!
Migraine Book Club Update

Monday, 24 June 2013

5 New Genetic Causes of Migraine Identified? Large Study Results Released!

The Daily Mail, The BBC, The Telegraph and probably even more newspapers and news sites are buzzing with some clever stuff that some clever scientists have been doing at the Welcome Trust Sanger Institute at Cambridge. It's all to do with genetic codes and DNA and migraine. It's exciting because the more we know about the mysterious beast that is migraine the better able we'll be to treat it and create medications. Just read all the articles I've linked to - they're short and will be able to explain everything far better than I! It's exciting stuff I promise.

But I will quote from the Daily Mail (actually this quote appears in most of the reports) but as my friend Fiona pointed out - their article is a wee bit more accurate than the good old BBC....wonders never cease.

"Lead author Dr Aarno Palotie, whose study is published in the journal Nature Genetics, said: ‘This study has greatly advanced our biological insight about the cause of migraine. Migraine and epilepsy are particularly difficult neural conditions to study; between episodes the patient is basically healthy so it’s extremely difficult to uncover biochemical clues.’

Dr Palotie, from the Wellcome Trust Sanger Institute, which is based in Cambridge, said: ‘We are narrowing down the areas that cause migraines.
‘In the future, we will be able to look at an individual’s DNA profile and target them with a more personalised, tailored treatment, rather than a fix all.’"

So there. Give money to research, via charities such as The Migraine Trust so that more exciting stuff like this can happen! 


Tuesday, 18 June 2013

Migraineur Of The Month: Mr June!!! On YOUTUBE....

Inspired by all the exciting Migraine Films that came out of the YouTube Film Hack in aid of The Migraine Trust (which can be seen here) I decided to do two things: 1. Set up a Migraine Monolouges YouTube Channel (sound the trumpets!) 2. Film Migraineur of the Month (gasp!)

I was actually in the YouTube headquarters when this, seemingly, genius idea sprang upon me. I mean, how hard could it be, to simply film a migraine sufferer for 5 minutes or so? Turns out - it's harder than it looks. But I was surrounded by professional creatives and cameramen from YouTube and from leading Ad Agenices in London - and they were making it look easy and fun. I had already chosen Charles Bosher, from The Migraine Trust, for the GREAT honour of being Mr June Migraineur Of The Month (you can see his evident delight in the film). So all I needed to do was shoot! I had my iPad with me so strode up to Bing (a YouTube content creator) and asked for advice. He kindly suggested that I should take advantage of the copious camera store room - and asked the dashing (French) Charles to assist. Dashing French Charles did indeed assist and kindly set up a Canon X34HJ3*&^TFGUIO! for me and Mr June Charles.

Realising I was, sadly, taking up too much of Dashing French Charles' time I confidently assured him I could easily handle the actual filming itself. "Pas de problem Charrrrles. I can point and focus this thing!". Oh je regrette becauoup. As you will see in the below video, Mr June himself is slightly blurry and out of focus. But fear not - the video is still watchable and enjoyable. I'm in focus! Also, the only reason I have my sunglasses on my head is because my hair was wet when I first put them on my head - so removing them I found my fringe had taken on a slightly "There's Something About Mary" quiff. Also, I had something in my contact lense the entire time which is why I appear to have a squint. Apart from that it's a really brilliant video which I know you're going to LOVE. Oh, and I also can't quite work out how to edit these things - but I'm very proud of the fact that I've managed to get words scrolling ontop of the screen. Oh yes.

So - now you're all excited - may I present Mr June - Charles Bosher - Migraineur Of The Month!

(Apologies to Bing and Dashing French Charles! I feel a little bit like I let you down - but next time I'll wow you both, you'll see!)

Issues/Medications mentioned in the video:
Medication Over Use Headache -

NSAID - Naproxen -

Imipramine -

Please talk to your personal Medical Practitioner about any of the medications mentioned above - this is not an endorsement or recommendation  Call the Migraine Trust or visit their website for more information on any of the issues raised.

P.S  I can't even work out how to set up my YouTube channel properly! I can't seem to get a profile picture or background picture that has the right pixels? Someone, anyone, help....

Thursday, 13 June 2013

Migraine Films – Behind the scenes at YouTube Film Hack with The Migraine Trust: Part I

For the last two weeks the best, brightest and keenest creative minds, from seven incredible advertising agencies, have been slogging their guts out to create short films as part of YouTube’s Film Hack challenge, all in aid of The Migraine Trust. The stunning results can be found HERE on The Migraine Trust’s YouTube channel.

I’m pretty sure this is the biggest (if not most exciting) event to take place in the migraine movement. Nay, this may have even created the UK’s migraine movement! Seven short films are currently on YouTube. Seven. About migraine. On YouTube. This is a movement I tell you.

As a media volunteer for The Migraine Trust, I was asked to speak at the Kick Off event, at YouTube’s headquarters, for this mighty challenge. As I stared out into the sea of blank faces I knew I had to do two things: 1, get these (rather trendy and seemingly intimidating) people to understand that migraine is a real neurological condition that can be incredibly disabling and 2, prove that the stereotype of a migraine sufferer as a spindly middle aged, hypochondriac spinster - is false. I was meant to speak for 10 minutes; I spoke for over 20. I cried, I sweated, I mentioned Eurovision (ask me why if you really want to!).  I’ve got no idea if I achieved my aim but I damn well tried.

As I sat down, I looked around the room and was suddenly aware that something monumental was about to happen. Several other incredible presentations were made from YouTube, from Mofilm, from The Moving Picture Company(MPC) and of course The Migraine Trust. I saw the fierce concentration, and then animation, in all the teams from the ad agencies. They were set. The challenge was on, and every migraineur out there will know what a challenge it is.

The advertising agencies, including Dare, Rainey Kelly and Saatchi & Saatchi where then partnered with YouTube content creators such as the infamous Bing, Crabstickz, and Ninebrassmonkeys (they have real names too!) to advise on the ins and outs of YouTube mastery. Each team was also given a mentor in the guise of a consultant from MPC, to mentor in moving picture, film, stuff. Over the next two weeks YouTube gave the agencies, (rounded off by M&C SaatchiKarmarma, Leo Burnett and JWT) every resource possible (including cupcakes) to make said films.  Most were actually shot and edited on roughly the same day, which is what a ‘film hack’ is all about. But the amount of planning and hard work that went into the films constantly rendered me speechless, and if you know me, that’s saying a lot.

YouTube cupcakes! You've no idea the excitement &
pleasure this created.

I was overwhelmed by the genuine dedication and commitment from every single team.  I watched as they slowly became absorbed and dedicated to the cause; they weren’t just in it to win it. One team auditioned 24 actresses for their film, and told me that almost every actress had a personal migraine story. Another creative told me that after the Kick Off event he immediately rang his sister and apologized for not taking her migraines seriously for all those years. Another even got his wife, a migraine sufferer, to feature in the film…. and I can give you a similar example from every team that took part. It became personal. And this is what happens when you start talking about migraine.

The YouTube team
YouTube-ing away in-between filming
Below you’ll find the seven films. The range in approach is fascinating. Some (in my opinion) appeal more to non-sufferers, trying to show that we migraineurs are young, fun people who are not total wimps. These films have a sense of humour and show that we do too! Remember that these films (designed to raise awareness of migraine and The Migraine Trust) are for a YouTube audience, and also have a social media and twitter campaign that go with each one. I was, therefore, so excited to see that only 24 hours after they went up young people (ranging from a ten, thirteen and twenty-year old) had commented on some of the videos, talking about their own experiences. This age range typically doesn’t realize that The Migraine Trust is there to help them. Now they know it’s OK (even cool) to talk about migraine and that they’re not alone.

(Behind the scenes: I took part in, and advised on, some of the films. Below are some shots from 'I'd Rather... Than Have A Migraine by the awesome team at Dare.) 

Nice and dry
Getting nervous


Anyone bring shampoo?

It was cold. It was wet. We did 2 takes. But I'd do it again.

One brave soul had his beard waxed!

Another fool offered to eat a 'Century Old' egg
i.e a Horse Urine egg! 

Other films demonstrate, in more visceral and gut wrenching ways, the severity of the condition. If you look at the comments under these films you’ll see that sufferers are sharing their stories and saying how much they can relate. You can share these films too and say ‘look, this is what it feels like for me’. I find these films both beautiful, scary and (as with the above collection,) am so grateful that they exist. I now have something to show my friends. Every film is based on the experiences (and descriptions) of real life migraine sufferers, mostly drawn from The Migraine Trust’s media volunteers and supporters.

(Behind the scenes: These are from 'The Vice' shoot. I spent the day observing the uber talented Rainey Kelly (RKCR - Y&R) team hard at work and even got to clap the sound board thing! Aren't I useful...)


The crew setting up for the shoot.
The lovely Amy Bell brushes up on her lines

Me being very helpful. 

 So here they are, in no particular order. Which one do you most relate to? Which one will you be sharing on your Facebook, Twitter and YouTube account? And you must share them – because that’s what this is all about. We now have seven very different ways (because migraine is so very individual) of showing people what it’s like for us. It may be you want to share one of the more lighthearted films (which at their core have a serious message) to show you have a sense of humour, to help challenge the stereotype. Or you may want to share one of the films that you feel best describes how your migraine feels. Or you may want to share them simply to raise awareness of The Migraine Trust. But get clicking and share.

(Rainey Kelly (RKCYR/Y&R)

(The Vice almost exactly, word for word, describes what a migraine attack feels like for me! 
I almost can't bear to watch it. It's quite scary isn't it?
I even found watching the shoot a bit emotional...)


(The amazing dancer in this video is a migraine sufferer, and actually had an attack the day before.
I think this is such a haunting and beautiful interpretation of a migraine. I observed some of 
the filming for this and was completely mesmerised.)


(This fabulous and cheeky film was inspired by migraine sufferers graphic descriptions 
of their symptoms - from a single Facebook discussion on The Migraine Trust's page. 
My brain definitely feels like this at times! Ouch!!) 


(This is a montage of famous YouTube virals and memes, with a twist! Clever stuff. 
Life really does stop when a migraine starts.
NoteTopiramate (Topamax) & Amitriptyline are preventative migraine medications
not pain killers. None of these drugs should be taken without first consulting your Medical Practitioner.) 


(Real life migraine sufferers volunteered to take part in this incredibly powerful film, to show 
what a migraine feels like to them -  including my buddy Dr Fiona Russell
I know she found the process emotional and thought provoking (more about this in Part II)
Actions often speak louder than words.) 


(Yes, this is the one I'm in! Several other brave volunteers took on challenges to show 
that migraineurs are not hypochondriacs or whimps. In fact, we're pretty tough - though I scream
quite loudly! And that we'd rather do ANYTHING than have a migraine. 
What would you rather do?) 


(This hysterical video shows both the funny and serious side of migraines. Yes, we've
all met someone who has used a migraine as a 'fake' excuse - making life impossible for
those of us who really suffer! Don't buy Steve's book!) 

Finally, a massive, massive thank you to all at YouTube  (especially Charlotte Morton and her team) and the seven incredible advertising agencies (M&C Saatchi, Karmarama, JWT, Leo Burnett, Dare, Rainey Kelly, Saatchi & Saatchi) that put so much time and effort – for free – into this project. I hope you all know how much this means to migraine sufferers and The Migraine Trust.

Now, let’s get YouTube-ing!

I’d love to hear your thoughts on the different films. Which one is your favourite?

Coming up!
Inspired by the YouTube Film Hack – I set up my own YouTube Channel
And FILM Migriaineur Of The Month….with slightly disastrous results…

Monday, 10 June 2013

A Brain Wider Than The Sky – Migraine Monologues Book Club Review

Published by Simon & Schuster

This migraine memoir, come historical exploration, come philosophical grappling with the ‘what’s’ and ‘why’s’ of migraine, had me crying on pg 4. I was on a train at the time so it was rather embarrassing.

What set the old tear ducts streaming was a description of Andrew Levy’s two-year-old son, Aedan, who features heavily throughout. Levy writes that from an early age his son has understood that “he had to negotiate with the headache, as if it were a third party”. (pg4) This isn’t what made me cry by the way – but this sense of guilt – and the heavy weight that a migraine brings to fatherhood and marriage is a large, and poignant, part of the book. I started to sob a few paragraphs further down page 4. Levy is alone with Aedan, he’s meant to be looking after his baby, when a bad headache strikes; again the guilt strikes just as hard as the pain of the headache itself. Levy lies on the floor of his son’s nursery, he’s in so much pain, hoping his son won’t need him. But Aeden walks in: “discovered me that way, and wrapped his arms and legs around my head…all firmness and feral grace, catching the pressure points of my temple pretty well….We lay like that for a few minutes, maybe longer….there are empathies that go beyond what we should know.”

The imagery of a two year old, silently trying to cradle his father’s pounding head just got to me. This is what Levy does so well in ‘A Brain Wider Than The Sky’ – he vividly and evocatively paints a picture of life with migraine, you can almost touch and taste it. It’s far more visceral than almost any other migraine book I’ve read, but as Levy is an English Professor and Writing teacher at a University you’d expect great prose. And you get it.

For example, he describes the onset of a migraine thus: “I can feel the shuffling under my brow, the blood and the nerves mediating, a little rush, a little constriction. It almost feels as if they’re considering whether to make a commitment.” (P.g2)

But actually my favourite description is: “And then a throb hits you on the left side of the head so hard that your head bobs to the right. You look to the referee counting you down to ten. There’s no way that came from inside your head, you think. That’s no metaphysical crisis. God just punched you in the side of the face.” (P.g11)

Where Levy slightly lost my avid attention, or rather where I sensed a chronic migraineur desperately trying to make sense of what was happening to him, was when he meditated on the moral and philosophical reasons behind why we, as human beings, get migraines. At one point he tries to make sense of migraine from a evolutionary standpoint, i.e cave women (perhaps) had migraines so that they’d stay indoors and nurture their young, while the cave men had brains that were sensitive to environmental, i.e. dangerous, stimuli. Thus, migraine is an evolutionary hangover (p.g 201). But just as I thought he’d gone mad (though there may be something in it?), he says the system really isn’t that elegant or neat. Levy eventually find his own sense of peace, and hope, when he “understood it’s crude language”. The ‘it’ being the migraine – and this is, on one level, what this book is all about. Levy trying to almost communicate with the pain. Levy describes migraine, rather wonderfully as ‘death-in-miniature’ – pain so great it shuts off thought, drives you into darkness – but there is an upside. It makes you hyper aware of being alive, of the good days. And in ‘A Brain Wider Than The Sky’ Levy also explores the creative outpouring that migraine can bring. For him, if I understood correctly, this is part of the piece and joy, he finds at last in just accepting life with this incurable disease. He stands back and takes a long hard look at every aspect of it, and learns to live with it.

Levy also finds comfort, as I have done, in pouring through the writings and historical biographies of famous migraineurs. Levy intermingles this with his own migraine diary of sorts (though I’m pretty sure yours and mine aren’t nearly so eloquent!) with tales of how we can see ‘migraine’ in the works of Picasso, Jefferson and Freud. Actually, after reading this I wonder if Freud isn’t to be blamed for the stereotype of migraineurs as neurotics because he ascribed one of his worst migraines, “from which I thought I was going to die” (p.g 125) to his daughters first menstruation! Incidentally, Freud, like Nietzsche, treated his migraines with cocaine! Don’t try this at home.

Nietzsche and Frued - both migraine sufferers. 

There really is a great comfort to be found in the writings of famous migraineurs, such as Emily Dickinson. The title of the book is actually taken from one of her poems. I’m incredibly grateful to Levy for introducing me to what will now be (for this month at least,) my favourite poem. On pg 91 Levy transcribes one of the most moving, and apt, poems on headache I’ve ever read. Actually, I found it so poignant I’m going to write it out in full too:

I felt a Funeral, in my Brain,
And Mourners to and fro
Kept treading - treading - till it seemed
That Sense was breaking through -

And when they all were seated,
A Service, like a Drum -
Kept beating - beating - till I thought
My mind was going numb -

And then I heard them lift a Box
And creak across my Soul
With those same Boots of Lead, again,
Then Space - began to toll,

As all the Heavens were a Bell,
And Being, but an Ear,
And I, and Silence, some strange Race,
Wrecked, solitary, here -

And then a Plank in Reason, broke,
And I dropped down, and down -
And hit a World, at every plunge,
And Finished knowing - then -

 Emily Dickinson

Doesn’t the phrase “a funeral in the brain? just describe things wonderfully? I could give you countless examples, from Levy himself, and from the quotations that start the beginning of each chapter, that make this book such a rich delight for migraineurs. As a creative person myself though, I explicitly understood what Levy meant when he said: “My mind felt like an abandoned house, all the furniture gone, the windows open, the wind blowing through, the shutters knowing in that absent way.” (pg 134). It’s only recently, as my migraines are easing, that my creativity, if you will, is beginning to return to me. So, I might argue with Levy’s thesis that migraine, in fact, spurs creativity but I empathize with the need to fully understand the historical and cultural context of what is happening to you. 

I also understand the double-edged sword of wanting/not wanting to talk about migraines at social gatherings. Levy is quite comical on this topic. He says he can spot someone with a migraine a mile off (as I’ve learnt to do) but that talking about migraines at a party, which is unavoidable if it’s consuming your life, will initially create a buzz of conversation that will eventually suck all the air out of the room. What to do? But, as Levy points out, until you start meeting migraineurs “hiding in plain sight” (P.g 184) you can’t appreciate the scale of the problem. And talking about migraines, might also spur more onto treatment.

In the end, Levy realizes (quite late in the game, as is all too common) that he must see a migraine specialist, rather than rely solely on his home made ‘cure’ of self help books, historical research and varying spirituality. He ends up on Topamax, which seems to work quite well to begin with but eventually, he decides to give up the drugs and what he calls ‘monkish’ (no caffeine, diary etc) lifestyle. He relies again just on Triptans etc. He concludes:

“When dealing with a shape-shifting disease like migraine, the best treatment is some combination of self-knowledge and a really good, trustworthy pharmaceutical.” (pg 198)

Reading ‘A Brain Wider Than The Sky’ will give you a very thorough over-view of the history of migraine treatment (including the poor Anne Conway who was so desperate for relief she let her own brother cut her head open!)  and philosophy (and Levy clearly read every migraine self help book out there,) as well as a very real and intimate understanding of being in a relationship with a migraine sufferer. Indeed, he is disarmingly honest about the impact chronic migraines had on his marriage. I was particularly moved by an issue that I constantly push to the back of my mind, “If you have a migraine, it’s fifty-fifty your kid will too.” If both spouses do it’s three out of four. “Should you have kids at all then…and how much guilt should you feel about the ones you’ve already had?”

The book ends with his son, Aedan, telling Levy that he’s started to see shapes and colours bobbling about in front of his eyes. Aura? And Levy says, if you haven’t already guessed, that the book is now, his way of “showing him the ropes.”

Discussion points:
  • Relationships & Migraine.
  • Family & Migraine.
  • Talking about migraine at social gatherings/parties – spotting fellow migraineurs and exchanging tips.
  • Why do we sometimes wait so long to seek treatment?
  •  Gender and migraine.
Directions to participate in discussion below!
Let me know what you thought of the book if you can't make the chat
I'll post highlights of our discussion for those who can't attend.

1. Click here to enter the chat room: MMBook Club (will open in a new window)
2. Enter Password: mmbookclub
3. Join in our incredible, life changing discussion! (But wait till 6pm UK & 1pm USA) 

Looking forward to chatting to everyone SOON! Spread the word! 

Friday, 7 June 2013

Migraine Films via Youtube Film Hack 2013 & The Migraine Trust

Stop what you're doing.

Something monumental is happening in the world of migraine.

Check out the Migraine Trust's Youtube Channel and watch as short films about migraine (plus some ads for the films) are being added. This is all part of a massive event called Film Hack 2013 that is revolving around migraine sufferers and The Migraine Trust.

I'll explain all about how and why this incredible opportunity came to be soon  - but right now I want you all to watch. And share. Proudly share these videos with everyone you know on facebook and twitter. Let's start a movement. Email your Granny and ex boyfriend, your cousin and that annoying Aunt.

This is it people. This is the moment that the world is going to start taking migraine sufferers seriously. Because it's not just a headache. And thanks to Youtube and some of the most creative brains in the advertising industry we have some incredible videos to SHOW people that it's not imaginary.

p. s You might recognise some familiar faces in these films.....ahem.
p.p.s I'm only sharing the above film as I can't work out how to share them all and well - I'm in the above one...but I advised on a few and they're ALL AMAZING!!!!!

Much more about all of this, including a 'behind the scenes' to follow! 

Tuesday, 4 June 2013

Leeches to be used for Migraine Treatment?

The Daily Mail has done it again.

I nearly spat out my soy chai tea latte when I read this headline "Emma Parker Bowles cures her headaches with leeches." I'm actually (secretly) addicted to the DM online - how they manage to keep  updated - to the second - with the latest celeb gossip is a marvel! And I was even featured in a DM article about migraine myself, so I do not pass judgment. I was spitting out my hot beverage due to the use of leeches!! (Let's just ignore the use of the word 'cure'...they need to draw in readers after all.)

PB having leeches! Photo by Michelle Thorpe from DM Article 

Af first I could not quite believe that a sensible person, such as Miss Parker Bowles, was submitting to such a medieval method. But then I remembered that leeches have recently been used in modern contexts and the article revealed that the saliva of the little suckers:

"contains a large number of analgesic, anaesthetic, and blood-thinning compounds that tackle pain and inflammation, say researchers"

So maybe it's not so crazy after all. I know I'll do anything to get rid of my migraines;  actually I thought I had tried everything from a hands on healer to Botox but clearly I've missed out! Miss Parker Bowles had 4 leeches put on her head, for a total 40 minutes. The description in the article is quite graphic, it's not for the faint hearted. Apparently, a total of 3 treatments is suggested for maximum effect. Since her first round she hasn't had a migraine and has felt great! I'd love to know how long ago this actually was - i.e 2 weeks, or 2 months? I'm also curious why it's said to help migraines. If a form of paralysis is induced by the leeches, could it, perhaps (I'm completely guessing here) be a natural, mini form of Botox... somehow? If anyone has any experience (or medical knowledge of this) do get in touch.

I'd love to hear from anyone else who has had leech therapy or, hirudotherapy, to give it it's proper name! Did it work for you? Did it hurt? Did you feel sad when the little leeches had to get euthanised at the end of the treatment....

Full article:

Coming up! *********
Don't forget on Monday 10th June we'll be 'meeting' for Migraine Monologue Book Club! It's not too late to join in and grab a copy of the book.

June 2013, Migraine and Headache Awareness Month (USA), is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The 2013 Migraine and Headache Awareness Month Blog Challenge is a project of
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