Migraine Monologues

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

2013-06-18T07:14:00.000-07:00

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 - http://www.migrainetrust.org/medication-overuse-headache
http://www.migrainetrust.org/factsheet-medication-for-migraine-10509
http://www.migrainemonologues.com/2012/04/drugs-dont-work-they-just-make-you.html

NSAID - Naproxen - http://www.webmd.boots.com/migraines-headaches/migraine-in-adults-naproxen

Imipramine - http://www.drugs.com/mtm/imipramine.html
http://www.migraines.org/treatment/protricy.htm

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....

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

2013-06-13T05:24:00.001-07:00

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 Saatchi, Karmarma, 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

Impact!

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...)

Make_up!

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.

THE VICE

(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...)

MIGRAINE

(M&C Saatchi)

(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.)

MIGRAINE: A REAL PAIN IN THE BRAIN

(JWT)

(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!!)

YOUTUBE IN PAIN

(Leo Burnett)

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

MORE THAN A HEADACHE

(Saatchi & Saatchi)

(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.)

I’D RATHER… THAN HAVE A MIGRAINE

(Dare)

(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?)

EVERY EXCUSE IN THE BOOK

(Karmarama)

(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…

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

2013-06-10T08:28:00.006-07:00

'A Brain Wider Than The Sky: A Migraine Diary' By Andrew Levy

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.

Reviews:

http://www.washingtonpost.com/wp-dyn/content/article/2009/06/19/AR2009061903308.html

http://latimesblogs.latimes.com/booster_shots/2009/05/a-brain-wider-than-the-sky.html

http://www.headachemag.org/Articles/ExpertQnA/QA-Andrew-Levy

http://bnreview.barnesandnoble.com/t5/Reviews-Essays/A-Brain-Wider-than-the-Sky-A-Migraine-Diary/ba-p/1129

DIRECTIONS TO PARTICIPATE:

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!

Migraine Films via Youtube Film Hack 2013 & The Migraine Trust

2013-06-07T11:18:00.001-07:00

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!

Leeches to be used for Migraine Treatment?

2013-06-04T10:53:00.001-07:00

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:
http://www.dailymail.co.uk/health/article-2334337/Gruesome-medieval-utterly-bizarre--leeches-freed-awful-migraines.html

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 FightingHeadacheDisorders.com.

Migraine Skull Art - Chapman Brothers new sculpture

2013-05-29T23:47:00.000-07:00

An article in this Sundays Observer caught my attention.

Journalist Laura Barnett, herself a migraineur, interviewed notorious artist Dinos Chapman about his current exhibit. The article opens with:

"Dinos Chapman knows a thing or two about migraines. As a child, he got one at least three times a week - "on Mondays, Wednesdays and Fridays," he recalls, grimacing. "And birthdays and Christmases and the first days of holidays. They were the vomity, shitty, explosive kind – the worst." Now, he gets them more rarely, but they've evolved into something stranger: "They're these quite surreal, visual and mental distortions that aren't actually painful, but they're really weird."

(Observer 26th May 2013)

Turns out Laura was there to interview Dinos because the brothers new sculpture is called 'Migraine'. It is an actual human skull, which Laura describes as "characteristically grisly, featuring hundreds of tiny men writhing from the eye and mouth sockets." The Chapman Brothers were commissioned to create this new work by a London gallery for an exhibition called Memento Mori.

I checked out the exhibitions' website and found a picture of the sculpture. What do you all think?

Taken from www.pertweeandersongold.com
Migraine, 2013 by Jake & Dinos Chapman.

Guest Blog: "My days of losing words" - a photo book about chronic migraine by Rachael Jablo

2013-05-22T00:49:00.000-07:00

I have a guilty secret. I don't like going to Museums. In my defence - they make me feel car sick. Someone should insist on more sofas and popcorn, I'm sure that would help. What I'm really trying to say is that my sister, the Art Historian, got the art appreciation genes. I'm the ideas person, the musical person. OK, what I'm really trying to say is that Migraine Art often freaks me out. Maybe it's supposed to, maybe that's the art doing it's job - but often I just can't relate.

Until now. Until, I saw the work of American Photographer Rachael Jablo and I had one of those gut reactions; similar to when I was sitting in the front row hearing Pattie LuPone singing "Everything's Coming Up Roses". She actually spat on me. It was a moment I'll never forget. When I first stumbled across Rachael's photographs, from her upcoming book** "My days of losing words", I stopped in my tracks and thought "Oh shit, I think I'm going to cry." And, I think that's art doing it's job.

Don't worry - you probably wont cry, I cry when I'm watching Home & Away, but I bet you a bag of popcorn you'll be able to relate to these incredible photographs which chronicle her journey with chronic migraine, in a manner you wont expect. Over to Rachel.

**************

My first experience with migraines was when I was 15. I developed a low-grade headache that lasted a couple of months. For whatever reason it never occurred to my parents to take me to a neurologist, but we went to my allergist and an eye doctor and they said I was fine and by the end of all that it had gone away, so I was never diagnosed properly. Which, in hindsight, I'm actually kind of glad about, because if I'd known what I'd be in for in the future, I think I might have gotten really depressed. It happened again in college, and then when I was in my early twenties, and that's when I was finally diagnosed in '08, when this particular cycle of migraine started and never stopped.

"Birthday" by Rachael Jablo

My mother was a photographer when I was little, and my earliest memories are of being in the darkroom in her closet with her. I got my first camera when I was about six, and once I started doing my own darkroom work in high school, I knew that that's what I wanted to do. Ironically, the darkroom is now a trigger for me. Between the crouching and the going back and forth between complete darkness and the bright viewing lights, not to mention the chemical fumes, I am almost always in pain after I print. It's worth it, though, because I love the meditative aspect of it, and so I work around it by spending only 3-4 hours at a time printing (as opposed to the marathon all night printing sessions of my college years), and making sure I eat and drink during and after.

In terms of other major triggers: strobe lights, gluten, alcohol, and sleep disturbances. If I change my sleep pattern, things also get ugly. My main comforts these days are ice packs (wrapped in an infinity scarf! my newest hack!) to the back of the head followed by a hot shower or bath. That will often make things better when drugs won't.

"Trigger" by Rachael Jablo

My days of losing words came out of necessity, for me. As an artist, I can't stop making work, even if I'm sick, and I wasn't able to make the the kind of work I was doing before. I think it's hard when you're in the midst of something to see where it's going to go, and who it's going to be for, and I'm so incredibly grateful to Alexa Becker at Kehrer Verlag for seeing what I wasn't able to see yet: that there are millions of people out there like me, whose stories aren't being told, and who might feel empowered by a book of photographs telling their story.

"Untitled Education" by Rachael Jablo

Rachael, thank you so much for sharing some of your amazingly powerful photographs with us, and the story behind them. In "Birthday" the cluster of medication bottles (lurking in the background) is all too familiar to me, and I'm sure to many others. I think they perfectly capture the loneliness and isolation of living with migraine, amongst other things. But as Rachel talks about in this article, the way she shot the rest of the photographs - also shows hope in recovery. They're beautiful.

**Rachael has a publisher for her book "My days of losing words" and is incredibly close to meeting her Kickstarter target - but she must reach it by May 28th!! So PLEASE let's support her.

Click on the video below to learn more.

'Migraine on Board' - Give Up Your Seat!

2013-05-18T01:40:00.001-07:00

True story, Parents' Christmas Party: circa 1998.

Family friend: Oh Victoria, you're positively blooming! How many months are you gone now? Five?

Victoria: Actually, it's my older sister, Jo, who is with child. Canapé?
(stuffs face with devilled eggs)

True story, Secondary School: circa 1992 (i.e I'd be 12)

Victoria: Um, Isabella, I can't carry all this heavy games equipment because of my special tummy condition.

Isabella: What condition?

Victoria: (sticks out tummy as much as possible) I don't want anyone to know, so you can't tell Miss Hamilton, but basically, I'm literarilly pregnant, so you're going to have to carry everything...for 6 months. Sorry.

********

Apart from proving that I was a chubby and evil lying teenager, (sorry Isobella, I still feel guilty!) the above does demonstrate that I'm pretty good at being mistaken for a pregnant lady. Oh yes.

And last week, I wanted so badly for someone to think I was pregnant and give me their seat on the tube. But, alas, they did not. I think it was karma payback for Isabella.

I was having a very bad case of migraine hangover (postdrome phase), so I felt as if I was walking around in waste high water, with sacks of sand tied to my feet, and generally battered and bruised. Standing on a crowded rush hour tube, I kept thinking my jelly legs would give way. And because we migraineurs 'look' fine no one is going to offer up their seat unless we make a fuss and ask for one - and obviously that's not British, or sensible. i.e I was just too embarrassed.

I know I'm not the only one who finds travelling on the tube, in the foggy mists of a migraine hangover, incredibly hard. A friend of mine recently tweeted she had to stop on her journey to work, and hide out in a Starbucks to rest - she was so drained. And it's not just when you're in the hangover phase.

Having a migraine on public transport is no picnic. Another friend recently got into real difficulties on the tube. Again, there were no seats in the busy rush hour - and just as one seat came up - a pushy commuter snuck in under her - sending my friend over the edge. Already feeling dis-orientated, tears started to flow (a symptom of her migraine), and to block out the fluro lights (her biggest trigger) she had to cover her eyes. At this point she got a seat, and a kind person did help her out at her stop. As my friend sat covering her face, (I've done the same many a time) worried passengers finally began to pay attention and asked if everything was ok; she explained she was having a migraine. A man in ear-shot said "Oh, a headache." She responded that she couldn't feel her face, this was no headache.....

Anyway. Back to me. So there was I was, jostling along on the tube, debating whether or not I'm going to have to get off at the next stop just so I can find somewhere to sit down, when the red sea of commuters part....and makes way for a pregnant lady bearing a badge with the sacred words "Baby on Board". She is offered about 6 seats. I evilly eye her as she smugly settles into her seat. You can barely tell she's pregnant (which, by the way, is why these badges are amazing, I've had MANY awkward incidents offering my seats to ladies who were not with child.)

Above is an example of one of the badges, which I'm sure many of you will have seen. They're everywhere (probably because Katherine Middleton - right - was recently seen sporting one!) They've revolutionised train travel. No more half hearted debating do you stand up, don't you, do you just avert your gaze and leave it to some other poor sucker to decide.

I think these badges are great and here's my proposition. I want one too. I actually, physically, want one. You can claim them from your local train station, so I was considering just getting one and wearing it on bad migraine hangover days! But then.... maybe poor pregnant ladies would feel hard done by, and also this doesn't do much for furthering understanding of migraineurs and what we go through. So, let's have a migraine badge!

This month's Migraineur Of The Month (Migraine Chick) has already made some rather funky Migraine badges. But she calls them buttons, or pins. Because she's American. She can't help it.

Image from http://migrainechickie.blogspot.co.uk copyright DL

Just think what our migraine badges could do!!! You could wear them in the office when you need annoying co-workers to shut up and dim the lights? Or when you need friends to muzzle their children and yappy dogs? The possibilities are endless.

And most importantly, well, for my immediate transport purposes, it might get me a seat on the tube. I think my 5 year old niece has a badge making kit so I'm going to start immediately. What should our badges say? 'Migraine On Board - Be Kind.'

Let's brainstorm (excuse the pun) people! Give me your best suggestions.....

MIGRAINEUR OF THE MONTH! Miss May

2013-05-13T00:57:00.002-07:00

A picture is worth a thousands words. So, I'm going to let this rather special Migraineur Of The Month, Miss May (whom some of you may know as The Migraine Chick) tell you her story in her own special way.

*****

In 2007, I started my migraine blog ‘MigraineChick' to document the consequent craziness that had invaded my life with having chronic migraine. I had always wanted to be a writer since I was little, and I even got my bachelor’s degree in English/Journalism, but in 1999 my chronic migraines started with no relief in sight. They just kept getting worse and I started losing my ability to write.

By the time 2010 came around, I was searching for a new creative outlet. At first, I started taking photographs and making collages because I thought I had no drawing ability, but I started doodling as a pain distraction measure. I found it a great comfort because it made the pain seem to back off.

With the pain distraction in mind, I bought some “how to draw” books and I started creating my own little "Migraine Monsters." I’ve always found my migraines to have a lot of variations, so I tried to show the different natures of a migraine through my creatures.

As I started to draw better, I began creating my “Migraine Girls," (see below.) They were cartoon girls who were trying to express all the emotions that go along with having chronic migraine.

With 2012 coming to a close, I found myself returning to my migraine monsters because I felt I could do them more justice with my improving drawing skills. I wanted to give them more individual personalities with better details.

"During a bad pain flair up, I frequently
feel like someone is sticking pins in the head
of a voodoo doll,
so I drew this little guy."

"Fire Ball likes to run around
on the inside of your skull,
making it feel like it's on fire during a bad migraine."

I find that drawing is my favorite comfort when it comes to chronic migraines. It distracts the pain for me. It gives me a sense of accomplishment and I’m proud when other migraineurs say that they like my drawings and they can relate to them, or they made them smile.

The Migraine Chick (@birdonthehead) lives in Southeastern Michigan, you can find links to her fabulous and charming migraine blog (with further descriptions of the drawings above) and drawing blog via:

http://migrainechickie.blogspot.com/

http://www.deborah-leigh.blogspot.com/

Wow. One of the many, many things I love about these drawings is that they're so deceptively simple; yet they totally get to the core - and bring to life - many varied aspects of migraine. The Migraine Chick often puts up new drawings and I always find them incredibly evocative - plus I love that they provide comfort for you (migraine chickie), too. And yes, they often make me smile. Thank you for sharing them with us.

The migraine chick was nominated by @Infiniteknot who said: "I am so very happy to nominate MigraineChick for a spot as an amazing blog resource for people with migraines. I stumbled across her blog as my migraines went from episodic to chronic a few years back - and it was so reassuring to be able to read about someone who was going through the same thing (debilitating pain, struggling at work, dealing with all of the symptoms of migraine) - she gets daily migraines. Also, she is an Amazing and Phenomenal Artist. She was creating collages when I first started reading her blog (some of them about migraine) but now she actually draws her own art (see her latest migraine monsters). I am always incredibly impressed and awed that she is able to use art to help her cope with chronic daily migraine. She is a continual inspiration to me to keep positive when living with migraine."

If you would like to nominate someone to be

Migraineur Of The Month just get in touch!

Guest Post: A Hemiplegic & Basilar Migraineur's battle for diagnosis and treatment

2013-05-07T06:12:00.000-07:00

You know you hear about those migraines that are often mistake for a stroke? Well, Mark Hutchence has those. You know those migraines that can cause paralysis? Mark has those, too. You know those headaches that are so excruciating they're known as suicide headaches? Yes, you guessed it, Mark has cluster headaches on-top of hemiplegic and basilar migraines. That's quite the triple whammy.

You'd expect to meet a man cowering in pain, scared to make even the tiniest move for fear of triggering an attack. Not Mark. Mark has an extraordinary tale to tell and I first met him, and his lovely wife, back in April, at the "Living with Migraine" event organised by the Migraine Trust and the Royal Society of Medicine, where Mark was one of the patient speakers. The first thing you notice when you meet Mark is the big smile on his face and his positive and determined outlook on life. Mark is the kind of man you want to go and have a pint with. But more importantly, this is a man who took his treatment and health in hand - and didn't give up until he got the specialist care and help he needed.

For any migraineurs out there who are feeling helpless, who are feeling neglected by the medical profession, who have been told "there's nothing more we can do for you, then you absolutely must read Mark's story below.

Mark's Migraine Story

Mark looking very suave

I have had migraines since the age of seven and until my mid-thirties they were always diagnosed as 'migraine with something extra'!!! So I went on the hunt for a correct diagnosis, as in Suffolk the neurologist I was under moved his stance to stress, anxiety, or a figment of my own imagination!! Anything but migraine.

So I hit the World Wide Web and from that hunt I found several good sites - the most interesting I found was BASH, (medical professional findings on headaches). From this I found articles written by the University of Neurology and Neuroscience (UCL) at Queens Square London. In one of those articles I found an email address for a Professor Goadsby. He seemed to describe what I had, so I emailed him (he wrote back) and from this I was referred. Being referred was a battle in itself and I had to enlist the help of PALS to get the referral over to him, as the current neurologist felt I was wasting their time and nobody could do a better job then himself!

In 2004 I was finally diagnosed with Sporadic Hemiplegic Migraine. In 2008 this was moved to Chronic as with the attacks, which totalled 14 days per month, I had chronic daily pain. I have been under the care of Dr P Shanahan since 2008. In 2011 I was then diagnosed with Episodic Cluster Headaches and in 2012, during respite care in UCL - which was DHE - this triggered or provoked my first basilar attack. The basilar, in my case, paralysed my right arm and everything below the waist for 10 days. I thank god I was in hospital as it scared me half to death but having the reassurance of the team helped immensely, I was told the basilar attack had mimicked a spinal cord failure!!

A hemiplegic attack can seem frightening to anyone watching, as it looks like a stroke and matches all key systems. In my case right sided weakness and numbness, dropped face and slurred speech with a phobia to light.

The Cluster headaches, in my case, were four attacks per day at the same time each day, which is common. These lasted for 18 months. I don’t know how to describe the pain. Towards the end of 18 months it became like a plane preparing for a crash landing. Getting myself comfortable was difficult, having to lie down, high flow oxygen at the ready, the attacks lasted, using high flow oxygen, around 20 minutes, 45 minutes without the oxygen, I can truly see why these are called suicide headaches.

Over my time with UCL I have tried a multitude of tablets, triptans and tried numerous block injections, these are Greater Occipital Nerve injection (GON) for me they worked for about two weeks then faded, multiple cranial block worked for about a month. GON is in the occipital nerve just below the ear canal either in one side or both sides on top of the occipital nerve, it feels and sounds really strange, I have a single injection in each side. The Multiple Cranial injection is like Botox, you have 25 injections in the forehead, temples scalp it cover all the major nerves, it’s an anaesthetic based injection with something else so after a few injections you cannot feel it. Whereas Botox is 32 injections, without anaesthetic, but in very small doses in a halo pattern follows the same path as the cranial block but extends down the neck and into the shoulders hence more injections. For me GON worked for about two weeks then faded, multiple cranial block worked for about a month. I have been more than happy just to have a break from the pain. UCL made me aware the blocks were not a cure. The process was a little uncomfortable, but it was great to escape the pain, however briefly.

For anyone reading this and trying to understand the pain, my brother-in-law saw one of my attacks at full flow whilst I was in UCL. He told the consultant that it was the worst pain he had ever seen any human being in; he was a Chief Fire Officer in central London for 25 years.

The migraines and cluster headaches do impact on my life. I work full time but it is a delicate balancing act and with flexi work it can be achieved. However, it does raise a lot of questions every time I go off work with an attack. It also effects my home life and family events. I try to manage my life around the attacks so if I have any event I am aware the next day I need to give myself time to recover. I have fought it for years but in recent years I learnt to trade off days and that works for me.

I would say to anyone with migraine that life is not easy by a long way. It’s one of those conditions that gets the flippant shrug off. However, in order to get the correct diagnosis and support (outside your family) means you have to sometimes fight. I am under UCL and to date I can’t fault their support to both my wife and I.

My recommendation to anyone just starting this journey is to write a diary and track the pain score of the attack, note food, drink, type of day you have had, weather, hormonal cycle for a month etc, this should help you build up a picture. Migraines are complex and this includes triggers. There is no magic tablet or cure and I have tried multiple drugs, some with better affect than others. I am now on Botox and it has made a huge difference but it is a stop gap and in my case an excellent one.

Mark, thank you so much for sharing your incredible journey with us. I'm sure I'm not alone in wishing you every success and luck with the Botox and upcoming treatments, you're a true inspiration!

Mark can be found on twitter at @MnHutchence and I know if you leave comments or questions below he'll get back to you as he can. I think we can all take a leaf out of Mark's book in his positive outlook to life, and in his determination to seek out the right healthcare team. Go Mark!

Links & Further Information:
Do call the information & enquiry line if you have queries about any of the topics raised in the above post. The Migraine Trust's website also has links to migraine clinics throughout the UK.

Dr Silver, who also spoke at "Medicine and Me: Living with Migraine" has made his presentation available to download - click here
Cluster Headache Fact Sheet
Hemiplegic Migraine Fact Sheet
Article on Basilar Type Migraine
GON article
Botox Fact Sheet

Childbirth v Migraine

2013-05-01T03:29:00.001-07:00

I should just preface this by saying: Mum, don’t worry I’m not pregnant.

Last weekend I went to my first ever baby shower, for my oldest friend in the whole world. I wish her, above all, a pain-free smooth-sailing birth, and a healthy happy baby. The below, so she doesn’t punch me in the face, is no reflection on her at all.

But being surrounded by all the baby grows, which inevitably led to talk of epidurals versus cesareans versus hypno births, once again got me thinking about the similarities between the pain of childbirth and the pain of migraine.

So I am now about to have a debate – with myself – on the topic of Childbirth v Migraine. You might think this is impossible, you might think I am crazy (probably true), and I also hate debating so this will probably fail. I was the kind of child who, when taunted in the playground, would return two days later with the perfect come-back retort, usually to a blank face as the bully had, by then, completely forgotten what we were debating/pulling hair over. But here goes…

I should also point out that I have never given birth, so obviously I don’t really know what I’m talking about and don’t mean to cause offence!

Migraine: Pro

On the introduction page to “The MigraineBrain” (actually the opening lines) by Dr Carolyn Bernstein, is a quote from Melissa, a woman in her 30’s, who has suffered excruciating migraines since childhood. She has just given birth to her first child, and asked to describe labour she says that the obstetrician instructed her to let him know when the pain got really intense so he could give her an epidural but before she knew it – her daughter was born “without any anesthetic”.

“When people say childbirth is one of the worst pains there is, I’m sorry, it’s not!”
(Melissa, pg1. The Migraine Brain.)

The main difference, as I see it, between migraine and childbirth is that after 48 hours (or however long your labour lasts) of excruciating pain, you have a beautiful new baby to show for it. It has been worth it. It has been for something. Migraine, by contrast, is a totally pointless pain. Untreated my migraines will last about 3 days, so 72 hours. At the end I will feel battered, bruised, tearful and it will take me days to recover - all for nothing. I also know I’ll have to go through the whole process again sometime soon.

Choice. Women, mostly, chose to bring life into this world. So they willingly (personally I think you’re all crazy and we need to invent some kind of system where you can lay an egg) go through this ‘natural’ process. Migraineurs have no choice.

Perseverance & Judgment. No one denies that childbirth can be one of the most painful experiences, for some of course it’s a breeze. I love the moment in Monty Python’s ‘The Meaning Of Life' when Terry Jones’ character just plops out a baby whilst doing the washing up! (Video below – warning outrageous language!). And of course, it can be the same with migraines. A woman who gets migraines might say childbirth was, for her, far more painful. Everyone experiences these things differently, they’re totally individual and almost impossible to quantify. But I often hear mother’s to-be saying they feel they have a challenge to overcome with getting through labour, they want to prove they can do it. It almost seems to be a matter of pride, of perseverance. Conversely, I have no pride. Knock me out and wake me up when it’s over. And those women who judge mothers for getting cesareans and epidurals, well I judge you. If my migraines last 72 hours un-medicated and I’ve been getting them coming up 14 years, doesn’t that mean I’ve essentially given birth about 1,000 times? I have nothing to prove. I know my body can handle pain thank you very much.

('Every Sperm is Sacred' from The Meaning of Life - explicit language)

Childbirth: Pro

Why don’t we talk about what happens? I’ve seen so many new mothers, right after childbirth, literally shell-shocked at what their body has just put them through. They are traumatized, even the ones who have been to antenatal classes. But people, every other person on the planet, since the beginning of time HAS BEEN DOING THIS. It’s nothing new!!! I don’t understand why it’s all shrouded in mystery, well it’s not so much any more – but I’m always astounded when I meet pregnant women or new mothers who are surprised at what’s happening, or just happened, to them. When new mothers find it hard to breast-feed, for example, no one told them it didn’t just happen ‘naturally’ and they feel ashamed, or when they’re judged for using formula; that is shocking in this day and age. And it’s the same with migraine – we’ve known about this condition for thousands of years. 1 in 6 people in the UK have migraine, 190,000 people every day get a migraine so why don’t we talk about it more, and help each other instead of judging one another as neurotic hypochondriacs? Of course migraine doesn't hold the threat of mortal danger that childbirth can, but that's even more reason for women to openly talk to one another about their experiences.

('The Miracle of Birth' sketch from The Meaning of Life, I hope this never happens to anyone!)

We forget pain. Or rather we forget the searing heat and intensity of that specific pain. If we didn’t, no one would ever have a child again! My sister has three of them. I also think this is the single biggest reason I’ve been able to get on with my life. When you don’t have a migraine and feel fine you forget you ever had one in the first place.

Ok, I’m now aware this debate isn’t really a very balanced argument, I did warn you I was terrible at debating. I once lost our school a national debate because I thought it was ridiculous that fans could possibly be upset at the band Take That splitting up. The opposing team responded that Child-Line has been inundated with calls from suicidal teenagers. Whoops. I also really wish I’d seen Take That live in concert.

In closing, my argument is that all I really want to do is highlight the similarities between the two experiences. My wish is that all lovely mothers to-be get the help and support they need, and that no-one judges them for whatever choices and experiences they go through, and that they prepare as much as possible for childbirth. Likewise for migraineurs. Educate yourself about this potentially disabling condition, learn everything you can about your migraine and get specialist help and don’t be ashamed to get all the help you need. And if it’s comforting to know that, for some, childbirth has been just as painful, or even nowhere near as painful, as a migraine then tell that to those who dismiss you as a moaning minnie with “just a headache”.

I’d love to hear from women who have both given birth and have migraines. How did the two compare? Obviously, as I mentioned above, both are such individual and variable experiences, it’s impossible to generalize but it would be great to hear some more first hand accounts…and obviously I wish all those who are about to give birth a smooth speedy labour.

Book Club Update: Next Book - "A Brain Wider Than The Sky"

2013-04-21T03:13:00.001-07:00

The inaugural (because this kind of feels Presidential to moi) Migraine Monologues Book Club was a rip roaring success. Lovely participants from Canada to Pittsburgh, to Brighton (we even had a late participant from Australia) joined together to chat about Oliver Sacks' book "Migraine" - and generally converse about life with... migraine.

Not all of us had read the book, I hadn't even managed to wade through the whole thing but that didn't matter one jot. If you missed out fear yet not - you can read my review of the book here - and check out our discussion here.

So what's next?
Together we've decided the next book will be....

A BRAIN WIDER THAN THE SKY

by Andrew Levy

P.S The UK edition of the book looks different - the cover is blue...oooh

I initially heard about the book via one of my favourite Migraine blogs "That M Word" by the lovely Emily, she posted this extract which so exactly sums up how my migraines often feel:

"And then a throb hits you on the left side of the head so hard that your head bobs to the right. There’s no way that came from inside your head, you think. That’s no metaphysical crisis. God just punched you in the face."

The book is part migraine diary/memoir by Writer Andrew Levy, and an examination of how migraines have affected his relationships with his wife and son, including a look at historical figures who also suffered and the impact migraines have on creativity....or so says Amazon.

The book is available on Amazon & also available as an Audio book via Audible.com (the US site only if you search under the title, not author.)

When?
Monday 10th June - 6pm GMT (UK) & 1pm EST (USA).

How?
We'll be meeting in a password protected chatroom - just follow the directions below to join in! As before a review will be posted here, on the day, to form the centre of the discussion.

DIRECTIONS TO PARTICIPATE:
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 June 10th!)

More info on the book:
http://latimesblogs.latimes.com/booster_shots/2009/05/a-brain-wider-than-the-sky.html
http://www.headachemag.org/Articles/ExpertQnA/QA-Andrew-Levy
http://bnreview.barnesandnoble.com/t5/Reviews-Essays/A-Brain-Wider-than-the-Sky-A-Migraine-Diary/ba-p/1129

I'll post any updates to the main MM Book Club page but just email if you have any questions and want to be on the email list.

Happy Reading!

Coming up:

Nerve Blocks All Sorts

Childbirth V Migraine

Updates from "Migraine & Me" Conference

"Migraine" by Oliver Sacks - book review

2013-04-16T09:55:00.003-07:00

Although this is titled a ‘book review’ it is, hopefully, a focus point

for the Book Club discussion to be held later, details below.

‘MIGRAINE’

By Oliver Sacks

Oliver Sacks is a man obsessed with migraines. He practically inhabits them. His book “Migraine”, originally published in 1970 and revised in 1992, is a self-confessed “meditation on the nature of health and illness.” Reading it, you get a sense of hurtling down the rabbit hole with Sacks as he explores every nook and cranny of a subject that clearly fascinates him.

It’s also comforting to read a book that is written by a fellow sufferer. Sacks experienced his first migraine when:

“3 or 4 years old. I was playing in the garden when a brilliant, shimmering light appeared to my left — dazzlingly bright, almost as bright as the sun. It expanded, becoming an enormous shimmering semicircle stretching from the ground to the sky, with sharp zigzagging borders and brilliant blue and orange colors. Then, behind the brightness, came a blindness, an emptiness in my field of vision, and soon I could see almost nothing on my left side. I was terrified — what was happening?”

Luckily for Sacks his mother was not only a Doctor but a migraineur so was quickly able to diagnose him. Thus the fascination, primarily with visual aura, began. Reading the book I wondered what it would be like to have Sacks as my migraine specialists. I was comforted by passages such as: “There is one cardinal rule: one must always listen to the patient. For if migraine patients have a common legitimate second complaint besides migraines, it is that they have not been listened to by physicians. Looked at, investigated, drugged, charged. But not listened to.” (234) Amen. However, his ‘mind-body’ approach, which I’ll describe below, would I’m afraid put me constantly on my guard; it’s also what made this book a troubling read for me.

From 2007 to 2012 Sacks was Professor of Neurology and Psychiatry at Columbia University Medical Centre (he is currently Professor of Neurology at NYU Medical Centre) and this dual approach – clinical and psychological - pervade the book. He views migraine as “part and parcel of the human condition” (xvi) and this subtle connection to mind-body dictates how he treats his own patients. In the Preface to the 1970 edition he states “Some patients I could help with drugs, and some with the magic of attention and interest…it now became apparent to me that many migraine attacks were drenched in emotional significance.” (xvii) It would be misleading of me to say that Sacks is suggesting migraines are psychosomatic (though Chapter 14 “Therapeutic Approaches to Migraine” did leave me slightly confused) – rather he views them as both “physical and symbolic events”. I’ll be fascinated to see if others interpreted this in the same way I did. I slightly wonder if this, Sack’s first book, is very much a product of it’s time, the 70’s. The flavour, tone and feel of the book is not at all similar to the many other ‘migraine guides’ I’ve read. Sacks is famous for his artistic writing style, in fact tomorrow the first annual festival of arts and ideas begins in New York City, a series called LiveIdeas, devoted to “The Worlds of Oliver Sacks.” His second book, “Awakenings” went on to become an Academy award winning film, staring Robert DeNiro and Robin Williams, that I remember sneaking into when I was 10!

The book, “Migraine”, is divided in five sections, preceded by a brilliant Historical Introduction, Part I, “The Experience of Migraine” describes the form of migraine as experienced by patients and is littered with case studies, as is the whole book. I found these case studies to be the most fascinating elements of the book. Hearing about other peoples migraine journeys made me feel less alone and less of a freak! It’s in Part I that you’ll find a lot of practical information, i.e what happens during a migraine. Also note, Sacks uses the term “Common” and “Classical” migraine to refer to Migraine without and Migraine with Aura respectively. In Chapter 1 on Common migraine (without Aura) I underlined so many symptoms of which I and friends of mine suffer I now can’t actually read the text! For example, stuffy noses, vivid dreams, excessive sleepiness, mood changes etc etc etc. Part II “The Occurrence of Migraine”, discusses the circumstances which provoke migraine, and here is where you’ll find the usual list of triggers, though they’re not really listed as such. But there is a rather funny section talking about Allergies in which Sacks says poor patients will go to Allergists and after elaborate testing follow “impressive rules…avoiding dusts and pollens, changing the bed linens, exiling the cat”! (He then goes on the say less then 1% of migraines are explicable in terms of allergic sensitivities.) Part III “The Basis of Migraine” revolves around the mechanism of an attack both physical and psychological . Part IV “Therapeutic Approaches to Migraine” talks about the role of Psychotherapy and the role of medication and “recent advances in treatment’ – though be aware this was written in 1992 so now feels rather out-dated. But if you’re a migraine geek like me it’s quite interesting to see what was ‘in trend’ at the time. Part V “Migraine as Universal” looking at ‘Migraine Aura and Hallucinatory Constant’ and the book concludes with a fascinating historical appendixes.

Appendix I is “The Visions of Hildegard” and for the first time suddenly made me wonder (despite having done an undergrad thesis on her) how she’d feel if she thought her visions could be explained as a medical phenomenon, and not as a miraculous gift from God? Another of the Appendix was three extracts from recommended migraine treatment from 1672, 1802 and 1892….which included “drawing some of the teeth” (305) along with a lot of blood and drops of opiumum. But interestingly, in 1892 “strong tea and coffee are popular remedies and occasionally give some distinct relief”. How far and yet how far still we have to go. Indeed, that was one of my overall impressions coming away from this book.

In the Historical Introduction, Sacks writes that migraines is a “daily fact of life to anonymous millions who suffer in secrecy and silence….it’s characters and circumstance, it’s physical and emotional symptoms – had all been clearly recognized by the second century of our era”. (1.)

And here was a man writing in 1970 (and by the way he apparently wrote this book in a 9 day burst) and how far have we actually progressed since then? And if you want to know about the medical history and treatment of migraine then this is the book for you.

Overall, this book is not an easy to read, accessible guide to living with migraines. It does not have handy list of triggers, or an up-to-date list of current treatments for you to compare and discuss with your Doctor. It is much more, and much less than that. It is for the highbrow migraineur, the intellectual reader who wants to meditate on the philosophical, historical and mechanical nature of migraine. I normally consume books on migraine, and then dip in and out of them like reference books as and when needed. I must confess if this had not been the inaugural Book Club choice I might have given up on “Migraine”. I’m glad I didn’t, I don’t have Aura and a large part of the book is devoted to describing various types of Auras (including colour pictures). And I admire him for being one of (if not the?) first people to write a text book on migraine that was so sorely needed, even if his approach makes me a little uncomfortable.

I think every migraineur, however, will be able to relate to the Foreword written by William Goody: “The common attitude is that migraine is merely a form of minimally non-disabling headache which occupies far more of a busy doctor’s time than its importance warrants”. Goody goes on to say that most migraineurs are told to “live with it” by Doctors “who hopes that he will not be on duty the next time the patient comes for advice."

Whatever else, Sacks is clearly on ‘our’ side and has done much so further the general understanding of migraine and how it effects the lives of those living with this terrible condition.

I give this a:

MMM rating! (Out of possible 5 M’s!)

Links:
http://www.oliversacks.com
http://migraine.blogs.nytimes.com/2008/02/13/patterns/

Do you agree or strongly disagree! Let me know your thoughts. Join in our Chat happening now! Directions below. If you can't join in just leave a lovely long comment.....

Directions:
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!

MIGRAINEUR OF THE MONTH: MISS APRIL!

2013-04-12T12:22:00.003-07:00

Meet Miss April, the magnificent Michelle! Michelle was diagnosed with migraines when she was only nine years old. I'm going to repeat that - nine years old. Despite going through ordeals that would wipe the smile off most healthy people's faces, Michelle manages to keep a sense of humour, and uses her wealth of experience to help others. She's taken part in research trials for migraine medications and has a wonderful health tumblr page and can always be found for a friendly chat and advice on twitter. In fact she was nominated as Migraineur Of The Month by Brittani who told me what great support and friendship Michelle has offered.

Plus it's her Birthday on April 16th so I can't think of a more worthy recipient of Migraineur Of The Month title.

The magnificent Michelle

Can you remember & describe your first migraine?

I don’t remember my first migraine. I was diagnosed with migraines when I was nine – my mother recognized the symptoms and since it runs in our family (in the females), she took me to a doctor right away. I do remember that the doctor’s didn’t know what to do with me, and I had to take this nasty tasting medicinal syrup when I got one.

Best migraine top tip anyone’s ever given you?

“Lay down with an ice pack in a dark cool room.” I have been doing that since forever. It is the one thing you can guarantee I will do when my migraine gets severe.

Worst Trigger?

It used to be gluten (the reason I now eat gluten-free). I’m going to say it’s a draw between really strong smells (perfume or cooking smells) and warm weather/lots of sun; which I’m lucky about, because living in the Pacific NW of the USA, it’s pretty rainy so sun is not too common.

Favourite migraine comfort?
Besides an ice pack, I always find myself eating as my migraine is starting to ramp up. I love eating junk food during that time. It’s like I feel that if I keep eating, my migraine will magically get better but it never does.

What’s the worst assumption that’s been made about you and your migraines?

The worst is probably that I’m using it as an excuse to not live up to my full potential, or that I’m using it to be lazy – kind of the same thing.

What are you most proud of doing despite living with migraines?

I think I’m going to have to go with having a relationship! I had really given up on dating and ever having a relationship until my boyfriend came along and really his perseverance is what made me change my mind. We’ve been dating for eight months now and he still puts up with my migraines and other health issues so I think we’re good! J

The cute couple!

Have you ever taken part in research trials? Would you have advice for others?
I’ve done a few as a pre-teen. I did one for Topamax effectiveness in adolescents, Imitrex nasal spray, and a sleep study for adolescences’ with pain conditions. The Topamax and Imitrex were already FDA approved so I wasn’t a lab rat, and I wasn’t scared about any adverse effects. My only advice would be to just do what you’re comfortable with. If I hadn’t wanted to do any of these studies, my parents would’ve been fine with that. I was already on Topamax at the time of the study, and I was looking for a new triptan when the Imitrex study was presented.

What other conditions do you live with as well as Migraine?

I was diagnosed with major depression disorder and generalized anxiety disorder when I was 16, hypothyroidism when I was 19 (also runs in my family), and I went gluten-free before I could be properly tested for it (DON’T DO THIS) but I do believe I have Celiac/Coeliac disease (my sister has it, and it also runs in families).

If you could be The President for a Year what would you do!?

I would allocate a sizeable amount of money towards migraine research and kick the butts of the National Headache Foundation into gear. I would help raise a lot more awareness about migraines and help people realize that it IS NOT just a headache. There’s quite a bit of non-migraine related stuff I would do too, related to food safety, GMO laws, and that sorts.

Hi, my name is Michelle Malley. I live in the Portland metro area of Oregon. I turn 23 on April 16. I was diagnosed with migraines when I was 9, and chronic migraines for the second time in March 2011, and have yet to find something to alleviate them. My favorite color is orange, I’m left-handed, and I love cats and cat-related things.

Twitter handle: michellemmmm

Health tumblr: tumblr.com/adoseofmichelle

Personal tumblr:tumblr.com/michellethemagnificient

Michelle, I think it's incredible that you cope with so much and yet help others. On a totally different note, I also feel like munching on loads of junk food sometimes during and after a migraine! Anyway, I know everyone will be wishing you a very happy and healthy (and hopefully migraine free) day on the 16th.

*****Don't forget THIS TUESDAY 16th APRIL

The first ever Migraine Monologues Book Club!

Click HERE for details of how to join in.

MM Book Club update & reminder

2013-03-22T09:51:00.000-07:00

The Migraine Monologues Book Club is now well under way and happy readers from America, Australia to London have joined up for this virtual world of migraine wonder! It's not too late to grab a copy of the book - "Migraine" by Oliver Sacks or even to join in our discussion next month.

You can read all about the MM Book Club here and learn more about my vision for what I'd love it to become. World domination, people.

The first book on the agenda, "Migraine" is considered a classic. Indeed, in a recent article Author Hilary Mantel declared:

"It changed my life, and I dare say that of thousands of other sufferers, by increasing my knowledge of this strange condition. And for a patient, knowledge is power. "

Hilary Mantel isn't the only one to heap praise on the book. I stumbled across this rave review by another Writer who was suffering from 'mysterious' crippling headaches until a happy accident in a book shop...

"My epiphany came when, browsing in a bookstore, I opened a copy of neurologist and writer Oliver Sacks's ''Migraine'... There on the book’s pages were sketches and artists' impressions of the visual disturbances and sensory hallucinations that came before the onset of migraines. There were the same jagged lines, the same smudged patches of vision. It was revelatory."

One of the reasons I love reading about migraine is finding comfort in knowing I'm not alone; Sacks describes all the weird and horrible symptoms that so many of us suffer with. It's so reassuring to know that 'it's not just me'! I must admit, however, that I haven't yet finished reading all of the book, but I'll be doing a summary review in April, so don't worry if you can't get through it all either! I will also admit to finding it a little dry but I'm enjoying dipping in and out of different chapters. For example, I don't have migraine with Aura so the multitude of case studies and examinations that Sacks includes on this area are incredibly interesting for me. I'm also enjoying reading about the history of migraine, especially the Appendix on the visions of Hildegard of Bingen - who I did part of my undergrad dissertation on! It's also comforting knowing that Sacks has struggled with migraine himself, so he isn't writing purely from an academic, or even professional, standpoint.

So, the grand plan is for the first 'meeting' to take place on Tuesday 16th April. Being such a fabulous international crew we have a few time zones to span. We're going to try an aim for:

1pm EST & 6pm GMT (I hope I have that right)

You can type in your local time to this handy Time Zone converter to see what time that would be wherever you live in the world. I hope this means that the USA lot can join us in their lunch break, and the UK lot can join in after work or at G&T time.

After much debate the MM Book Club Panel (which anyone is welcome to join) has decided to hold the first discussion via a password protected chat room. The bonus of a chat room is we can have a proper discussion without being limited to 140 characters (twitter) and chat more freely, and of course there may be those of you who don't use twitter. Gasp.

Directions:
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 until April as otherwise you'll be talking to yourself. Sad.)

[Many thanks to the fabulous Diana Lee for this format which is what she uses for Migraine Chat]

I'll re-post the above links nearer the time - but don't forget you still have the best part of a month to check out the book! Don't worry if you can't make the actual discussion, you can still take part by commenting here on the main review that I'll post on the day - which, incidentally, will be the focus of our chat room discussion.

I also want to assure you that the Panel and I will be voting on some exciting fiction and photography (featuring and created by migraine sufferers) for the next exciting instalment of Migraine Monologues Book Club. Watch this space.

And now I have some reading to get back to...

Links
http://www.guardian.co.uk/books/2013/feb/08/my-hero-oliver-sacks-mantel
http://bigthink.com/age-of-engagement/diagnosing-a-migraine-how-popular-science-helped-a-writer-cope
http://www.amazon.co.uk/Migraine-Oliver-Sacks/dp/0330526146/ref=sr_1_1?s=books&ie=UTF8&qid=1363969376&sr=1-1

MIGRAINEUR OF THE MONTH: MISS MARCH!

2013-03-14T04:01:00.001-07:00

I am excited, honoured and thrilled to present the lovely Miss (but not for much longer) Emily Guzan as Miss March, Migraineur Of The Month! Emily writes one of my FAVOURITE migraine blogs: That M Word, full of pithy, insightful and funny words of wisdom about living with well, 'that m word'. Emily is due to get married this summer and here she talks about how migraines are affecting her wedding plans, how they've shaped her career choices and how you better not say 'I had a headache and thought of you!'. This die hard Pittsburgh Steelers fan is an inspiration to all of us living with a chronic pain condition and I'm now off to buy myself some 'Kool 'n Soothe' patches on her recommendation.

The lovely Emily - Miss March!

Can you remember and describe your first migraine?

I have had headaches for as long as I can remember. My first migraine (note the difference!!) was when I was a junior in college. My friends and I watched our football team, the Pittsburgh Steelers, win the Super Bowl. After the game, the students were so excited (and probably so drunk), they all ran into the streets and started rioting. I was trying to walk back to my residence hall, and people were flipping over cars and lighting things on fire – it was quite a scene. The police came and were trying to calm everyone down. I had a headache the whole time and I noticed that the sounds and lights seemed to make my head feel worse. I had never experienced a sensation quite like that. My friends stayed to watch the scene, and I left to go to my room. All I wanted to do was lie down in the dark and put a cool washcloth on my face. I had never had a headache with that type of intensity before.

Best migraine top tip anyone’s ever given you?

Someone told me to remember that flight attendants always tell you to put your oxygen masks on before helping others with theirs. It reminds me that I have to put my health first before I can be of any use to anyone else.

Worst Trigger?

My worst triggers are hormone changes and weather changes. No matter what I do, such as exercise and sleep the right amount, eat correctly, or avoid all other triggers, those two are just inevitable. In terms of food triggers, MSG, alcohol, and shellfish are my worst.

Favourite migraine comfort?

I could write a love song about the Migraine BeKool gel packs. They really do relieve the pain a bit. I recommend them to everyone! I like them better than ice packs because you can move around easily and you don’t have to worry about them melting and dripping down your face. In the UK and Australia, I think they are called “Kool ‘n Soothe.”

What’s the worst assumption that’s been made about you and your migraines?

I think the assumption that migraine is not really a serious disease and is something that can just be joked about in passing is very hurtful. I have been very vocal about the effect it’s had on my life, and so many people, even close friends and family sometimes do not understand that. People always tell me “I had a migraine and thought of you” or “every time I get a headache, I think of you.” It is a really terrible feeling to hear that. I wish they'd associated anything more pleasant with me. My mom survived breast cancer, and it’s not like people openly say to her, “Every time I think of cancer, I think of you!” I don’t understand why people think they can say that to someone suffering with chronic pain.

What are you most proud of doing despite living with migraines?

Well, unfortunately I did have to leave a career, mostly because of migraines, and I honestly was not sure if I would ever work again. I know some people with migraines physically cannot. I am really proud of myself for blogging and connecting with the migraine community. Connecting with my virtual migraine community every day gives me strength I did not know I had. I am especially proud of myself for starting a second career. My new career is much more suited to my personality and is more of a “helping” profession.

How have migraines affected your Wedding plans?

I was really nervous to plan a wedding but I didn't realize how kind my core support system, namely my mom and my fiance, would be about my migraines and sensitivities in planning. One of the reasons I love my fiance so much is that he has been so incredibly supportive about my migraines, especially during times when not many others have been. During the wedding planning process, my mom and my fiance have been focused on making it a fun, happy day for everyone - and that means me not getting a migraine! I think they realized that a wedding with a bride in the ER would probably not be a very fun wedding at all.

For example, when my fiance was interviewing DJ's, he selected one who used small speakers placed around the reception area, rather than two large speakers because he thought that would be better for my sound sensitivities. My mom and I are going to put inserts into the wedding invitation with a little rhyme asking that wedding guests not overdo it with the hairspray and perfume because if I hug 200 people, each with a different fragrance, that will be a migraine for me! I also am not going to wear high heels because I know that will give me a migraine. I have no idea if any of this will work, but I so appreciate the caring, considerate attitudes of my support system! I will be sure to update you after this summer!

The Happy Couple! Leeann Marie Photography. Pittsburgh

If you could be The President for a year what would you do!?

That is definitely not a job I would want!! I hate talking politics so I will just say what I would do regarding migraines. I would love to provide more funding for migraine research and raise awareness of what migraines actually are (not just a headache) and how they actually affect us. I can’t even imagine the effect that having that kind of a platform might have on raising awareness!

I am a lawyer turned blogger and counselor-in-training. I blog about migraines and chronic pain and sometimes my Raynaud’s as well. When I’m not talking about health, I play with my cat, Larry Fitzgerald, plan for my wedding this summer, cook vegetarian food, and cheer on Pittsburgh sports teams.

www.thatmword.com

www.facebook.com/thatmword

www.twitter.com/emilymword (@emilymword)

**************

Emily, thank you SO much for being Miss March, Migraineur Of The Month! My fingers, toes and arms will be crossed for you this summer, wishing you a migraine free wedding - but I'm sure with all your cunning preparations the day is going to be a huge success. Do keep us updated. p.s Will you be honeymooning in the UK! x

Bananas, Sex (& Rpatz) Will Stop Migraines...apparently

2013-03-11T10:17:00.001-07:00

Last week two articles appeared in the Daily Mail about Migraine. One was about a 38 year old Mother who had found that eating Bananas had "cured her crippling migraines". The other was reporting on a recent German study, leading with the headline: "One in five migraine sufferers had no symptoms after sex".

Eric, Banana Man!! I bet he can help....

So, am I meant to eat the Bananas while I have sex? How many Bananas do the trick? Or do I have sex, then eat a Banana? If I'm having a bad turn, say a 3 day bugger of a migraine, that's a lot of medical sex, so I'll be pretty hungry afterwards, I'll want a lot of Bananas. Do you think Tesco's will do me a deal?

OK, I'm being facetious. I'm geniunely happy for the lady in the Daily Mail article. Reading the piece closely, it appears that her migraines have really been tempered, not cured, by regulating her blood sugar. Ironically, Bananas are a trigger for many migraineurs. I was told years ago by a Specialist Gynaecologist (random I know) that we women should eat a little complex carbohydrate every three hours - as that's when our blood sugar levels dip, or something. Men, apparently, being obviously superior creatures, can go for longer! I see this as my excuse to eat crisps frequently.

I'm every so slightly hypoglacemic, (I slightly wonder if Banana lady isn't too?) and it's very important for all of us migraineurs to keep even blood sugar levels - but it seems to have been an especially sensitive trigger for Lisa Poyner (that's her real name). And who knows - maybe there is something about Bananas that helps her specifically? As I like to say, migraines are bespoke after all.

And so to sex. Here is a better break down of the recent German study, that was actually conducted by a questionnaire. This makes me slightly suspicious. I don't know if I'd answer an anonymous, postal questionnaire about my sex life completely honestly? But maybe I'm just an awful person? Don't answer that!

Although it is, of course, delightful to note that a small percentage of those who actually filled in the questionairre did find relief from their pain in such a feisty fashion - everyone reporting on this study has completely forgotten to mention a) I don't think Robert Pattinson is going to want to get down and dirty with me when my left eye is droopy or when b) even the touch of pillows feel like daggers in my skulls. But he is a super hot eternal vampire so he might have ways of removing my clothes without causing me any pain or discomfort? And c) what if I have one of my mega stomach blow fish spasms that make me look like a cow giving birth? It's not, exactly, attractive. But - this would all be for science. So, Rpatz, I hear you and skinny whatsherface are having trouble, what do you say? Will you be my migraine buddy with 'benefits'?

Rpatz & Me

Nearly every reporter has wittily noted that it looks like now we, women migraineurs, will not be able to use the age old adage of "Not tonight, dear, I have a headache." Oh you stupid fools. Yes, we have just been faking it all these years. But now you've given the game away what excuse can we give to the gullible men in our lives? "Not tonight, dear, I've run out of Bananas?"

Links:
http://www.healthcentral.com/migraine/c/123/159570/treating-migraines-headaches/2?ic=2601
http://www.dailymail.co.uk/health/article-2287618/Sex-better-headache-cure-painkillers-1-5-migraine-sufferers-symptoms-sex.html
http://cep.sagepub.com/content/early/2013/02/19/0333102413476374.abstract
http://www.dailymail.co.uk/health/article-2287786/Mother-claims-20-years-crippling-migraines-cured-diet-BANANAS.html
http://www.telegraph.co.uk/health/healthnews/9906594/Why-sex-is-a-better-headache-cure-rather-than-painkillers.html
http://chickletteshobby.blogspot.co.uk/2013/03/in-my-humble-opinion.html
http://www.migrainetrust.org/factsheet-hypoglycaemia-and-migraine-10907
http://migraine.com/blog/a-balanced-diet-living-with-migraines/
http://thatmword.com

Unhelpful Helpfulness - when strangers offer advice, it's often anything other than helpful.

2013-03-01T07:49:00.002-08:00

Annoying helpful person #108: “Oh my God my Great Aunt Beatrice had migraines too and she swore by putting spinach leaves up her - ”

Me: “- Gosh that sounds fascinating but I have a leaky bladder so I really have to run to the little ladies room. Right now. Sorry.”

Annoying helpful person #238: “My Mother-in-law swears this Guru Therapist cured her migraines, here is his card. He’s expensive but you MUST call him and -”

Me: “- I’ve just been declared bankrupt so you’d have to give that card to my lawyers. But thank you.”

Annoying helpful person #3498089: “Ah, interesting you say migraines. My friend’s cousin’s, brother, stepsister, father by their first marriage had a daughter-in-law who suffered horrifically and they found that eating sugar lumps solved everything. Have you tried- ”

Me: “Oh my God I’ve got diabetes how could you be so insensitive?! ** And yes I have tried whatever you’re going to suggest next, please see the ‘tried and tested’ section on my witty and informative migraine blog for more information! Good day.”

===============

Just to clarify, I am not a bankrupt, diabetic with a leaky bladder.** Apologies to anyone who is, no offence meant. It must be a horrific way to live (cough – Martine McCutcheon – cough) Kidding. I love her, actually.

But recently I find myself reluctant to ‘out’ myself as a migraineur – even though the whole purpose of this blog is to do just that. I believe, whole-heartedly, that we need to engage, educate and talk more openly about migraines; make it less taboo. Yet, yet – there are quite a few downsides. One of these is what I call Unhelpful Helpfulness.

Now I am extremely guilty of this too. When I meet a fellow migraineur in the flesh, I find it incredibly frustrating when they don’t want to engage with me as I feel sure I can help them in a number of ways (arrogant, moi?). I don’t mean I’ve any delusions of being a Doctor (I do slightly wish I was House) but I’ve probably read more about migraines than the average GP, and I feel I can point people in the right direction in terms of getting access to the right help and support. So before I begin my rant, proper, I put my hands up and fully acknowledge that I’m seriously annoying in this area too – I am an Unhelpful Helper. But – I’m pretty sure I can help you as my advice is amazing!!! Sigh.

Anyway. The most annoying Unhelpful Helpfulness (I’m not quite sure if this is a noun or a verb, stay with me) comes not from those who mean well, whose heart is in the right place - those people I can forgive and bear to listen to and nod along politely with - but to people you’ve JUST met. I mean, you’ve know them for FIVE seconds and already they’re saying “You must try this! Why haven’t you tried this? Now do this!”. It’s exhausting. These people who’ve know you, and apparently diagnosed your entire complex medical condition in FIVE seconds (they really should all give up their current professions and become diagnosticians) make me feel guilty, lazy and defensive. And quite frankly, I work hard enough fighting migraines, I don’t need to waste my time explaining my life history and medical choices to these chumps.

The problem is, I have tried most things. Side note: I don’t ever say I’ve tried everything. And I’m always suspicious of migraineurs who say “I’m running out of options” or , “I’ve tried everything”, as that’s virtually impossible. We must never give up hope. There are over 100 variants and combinations of preventatives and assortment of treatments to try – so have you really tried them all? Usually this means you need to find a new Doctor. Um, I’m being an Unhelpful Helper again.

But one of the worst types of Unhelpful Helpfulness is when people get disappointed or angry when you a) have actually tried their random suggestion of eating butterfly wings and b) it didn’t magically CURE you. These people want to fix you. They don’t understand why you’re not FIXED. In short, they don’t understand – and can not comprehend - chronic pain conditions. Young people, and those who have never had any kind of serious health complaint themselves, are often these type of Unhelpful Helpers – offering tips such as “Go for a jog” or “Drink Green Tea!”.

However, I once met this seriously annoying girl, who actually had migraines herself. I was really beginning to struggle and she just looked at me as if I was this pathetic Rabbit she’d skin alive and said, “I just learnt to control mine with my mind. I had to go on stage and sing with a migraine, I didn’t make a fuss” (the implication being I clearly was) “And I just suppressed it and got on with the job! Now have you tried Devil’s Claw?”

“Yes, I have tried Devil’s Claw, actually.”

“Well try it again. Learn to control the pain with your mind.”

“You are clearly just a stronger, better, more amazing person than I will ever be. Bye.”

I couldn’t believe that a fellow migraine sufferer was being so unsympathetic. And I know that for some, Devil's Claw and mindfulness/meditation can do wonders. But for me it didn't. Usually, I’m always fascinated to listen to the stories of other migraineurs, what treatments they’ve tried and tested, what side effects they experienced from which medications, what tricks they use when they’re feeling nauseous etc etc etc. We can, I believe, learn so much from each other. I always say that ‘migraines are bespoke’ (that phase is copyrighted to me, people), i.e how we react and experience migraines is incredibly varied person to person. But there is a lot of common ground and a lot we can learn from one another. We may even pick up a new coping mechanism that will have a profound effect on how we manage the condition.

So, the moral is: Unhelpful Helpfulness doesn’t (usually) come from fellow sufferers of chronic conditions, who understand that there are no quick, magical fixes. But it can come from well meaning members of the public who bombard us with anecdotes and ‘helpful’ advice! I know I sound mean, and I do feel slightly torn as sometimes, just sometimes, it can be worth listening to those random people you bump into at the office Christmas party. You never know, maybe their Great Aunt Beatrice might have had a very clever trick that actually works for you? Friends of my Mum frequently send her migraine articles cutout from newspapers (they’re still getting the hang of email), in the hopes that it might be of interest to me. I find this rather touching. 9 times out of 10, I’ll have already seen it but I do appreciate the thought, and you never know, I might have missed it. A couple of years ago, such an article did spur on Mum to drag me to a new Doctor who, apparently, had helped Bella Freud with her migraines! It didn’t amount to much in the end but I learnt a few things. The actions of my mum’s friends, by the way, comes under the heading of ‘thoughtfulness’, rather than Unhelpful Helpfulness.

I guess what I’m trying to say, is that on the whole it’s just exhausting trying to explain your complex medical history, often to a stranger, often in the line to the loo, and trying to make them feel better when they demand to know why you won’t be taking the card of their mother-in-law’s dentist. (FYI, I have tried that route.) And why, after 13 years, you’re still not better. Maybe I should just smile, count to ten in my head, and take the “incredibly useful” advice of the next Unhelpful Helper I meet.

** I know NOTHING about sugar and diabetes. But here is an incredible useful website if you want more information about this topic from people who actually know what they're talking about....

http://www.diabetes.org.uk/Guide-to-diabetes/Food_and_recipes/Sugar-and-sweeteners/

The Migraine Monologue Book Club!!

2013-02-20T00:48:00.001-08:00

Oprah, it's over.

Richard and Judy, don't even bother.

Good citizens of the word, a new, exciting Book Club is about to explode into your lives. Yes, that's right today I can officially announce that THE MIGRAINE MONOLOGUES BOOK CLUB is open for business!!!!!!

A greasy looking Chipster kitten, getting stuck into an article about
Agatha Christie, one of his favourite Authors.

The MM Book Club is a Book Club with a difference. The name may have given it away. We will, mostly, be exploring and enjoying books, articles, essays, films, paintings (who says a Book Club HAS to restrict itself to books?) that are, in some way, related to migraines.

Doesn't that sound like fun!?

And you, dear readers, will form a (voluntary) Review Panel, who will take it in turns to write a main review article that will be the basis of the on-line, virtual, Book Club discussion.

I have big plans for this sucker, including non virtual, and virtual talks from Authors, world domination and more!

Reading about migraine, even listening to fictional audio books where a character suffers from a chronic pain condition, has been so enlightening and comforting for me and is, I believe, vital to living with this bugger of a thing called migraine.

I've set up a new permanent page (just look up the top, see?) for the MM Book Club which will tell you EVERYTHING you need to know including: What? When? Why? How?

Most importantly, checking out that page will reveal the identity of the first book! But I'm so excitied I'll just tell you now!!

"Migraine" by Oliver Sacks

I'm sure many of you have already read it, so there's no reason not to join in the first, life changing, MM Book Club meeting which will probably be @16th April 2013.

To join the MM Book Club (but by the way anyway can join), to volunteer to join the Review Panel, to learn more about what the heck is going on click here or just email me at Victoria@migrainemonologues.com!

Happy Reading People! Let's take over the Book Club world! xx

Meet Miss February Migraineur Of The Month!

2013-02-18T01:05:00.002-08:00

Well I'm just bursting with excitement to introduce you to Miss February, my migraine buddy, Fran. In fact, she probably needs no introduction. You may already know her as the author of the mega blog Skullsandponies, you may have already read and even watched her various entries on this very blog, here & here! Seeing as it's February, the supposed month of lurv, I asked Fran some questions about relationships and migraines. And seeing as my longest relationship thus far is with a furry four legged chap called Chipster, I decided the wise lady Fran could probably offer more advice than moi. Enjoy.

The incredible Fran

Can you remember and describe your first migraine?

It was in my final year of University and I was sat outside my experiment rooms (I was doing a Psychology experiment and busy experimenting on willing students!). I’d been there for hours and my head was just pounding and I felt so sick. It was the worst headache I had ever had and Ibuprofen just wouldn’t touch it. Back then I thought it was just a bad headache but it was definitely the start of my migraines.

Best migraine top tip anyone’s ever given you?

I think discovering triptans and feeling like the GP had been keeping an amazing secret!! But also – aspirin in coke. That’s been a life saver – especially when I had medication overuse headache.

Worst Trigger?

Stress. Even the smallest bit of stress is likely to trigger a migraine – and as a fairly anxious person this doesn’t make life easy.

Favourite migraine comfort?

Chocolate – and being bought chocolate when I’ve had one!

What’s the worst assumption that’s been made about you and your migraines?

That there is a cure and it’s somehow my fault that I haven’t found it yet. People seem to get very cross if they suggest something and you don’t do it – which often means you have to try out a whole bunch of crap that you know won’t work just to prove people wrong! Everyone seems to know someone who had migraine and was magically cured by acupuncture/not eating chocolate/eating magical unicorn hearts – and they get so annoyed when they can’t cure you on the spot! The idea that a condition might not have a direct cause and could be chronic is not a good enough answer to most.

What are you most proud of doing despite living with migraines?

Managing to set up my own business and make it successful (even though migraine was the reason I did this as I couldn’t handle a full time job!)

If you could be the Queen of England for a Year what would you do!?

Well I’d start by getting the Tories out of government…..

What's the most helpful thing that your partner has ever done for you during a migraine?

This might sound cheesy but just being supportive. He never moans or complains when, yet again, he comes home from work and I’ve got a migraine. He never makes me feel like it’s my fault – he is unrelenting in his support and that makes my life so much easier. He is just consistently supportive and really – you have no idea how much of a difference that makes. Plus this one time I had a migraine I was hungry but really sensitive to light, so had to eat in the dark, and he came and ate his dinner in the dark with me. That’s true love.

Fran with her handsome fella!

What advice do you have for other migraineurs in relationship?

Be open and honest and talk about everything. Understand that it’s hard for them too when you have to cancel plans last minute or lie in a dark room. They are often the ones that get the brunt of it too, as often you’ll push through wherever else you can but expect them to be ok with you cancelling on them, or being too ill to just hang out. Make time to prioritise them – after all they are the ones that put up with us migraneurs day in day out! It can’t be easy.

My name is Fran. I am a 28 year old freelance digital marketing consultant. I live by the sea with my lovely boyfriend and little ginger and white kitten. When I’m not having migraines you can find me reading, crafting and getting lost in my imagination.

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Thank you so much Fran for agreeing to be Miss February, and for your top relationship tips. I shall be more considerate of Chipster's needs. Kidding. I know many readers will be able to relate to what you've said and be extremely grateful for the nudge to see life from their partners view. I also think it's incredible that you've managed to set up your own thriving company, despite all the obstacles that these buggery migraines throw in your path. I just know it's going to be a huge success.

If you would like to nominate someone to be Migraineur of the Month,

all you have to do is email me!

Coming up:

Unhelpful Helpfulness

Nerve Blocks; all sorts

Child Birth v Migraines!

She Attended With Her Mother – Why I never go to the Doctors alone.

2013-02-13T03:40:00.001-08:00

Consulting rooms in X Hospital in 2003

Doctor 1: Mrs Saxton, could you please step out of the room?

Consulting rooms in Y Hospital in 2006

Doctor 2: Mrs Saxton, could you please step out of the room?

Consulting rooms in N Hospital in 2011

Doctor 3: Mrs Saxton, could you please –

Me: No she could not! I am not being forced to attend this appointment, I came of my own free will, I can leave of my own free will, and in case you’re wondering I am not a member of a bizarre religious cult. I know this may be hard for you to understand but I have perfectly good relationship with my both parents; even my Mum! And not that it’s any of your business - but at this moment I’m not married or in a serious relationship. My friends have jobs and I don’t want to ask them to take time off from their jobs to come to this consultation which, if you do your job properly, will contain a lot of seriously important and useful information that I may not fully digest or hear correctly. We have a lot of ground to cover today and I think 3 brains, are better than 1. Being a neurologist you should agree! So, no, my mother will not be stepping out of the room.

I might not have said exactly all of this - but Mum really has been asked to leave consultations several times since my migraine journey began when I was a bright eyed, smiley 18 year old. I’m not quite sure why, she’s a sweetie! Some Doctors genuinely could not understand why an 18 year old would want a parent present, and it dawned on me that these Doctors thought migraines were purely ‘psychological’ – induced, perhaps, by having this awful, horrendous mother who took time out of her life to, oh my god, support her daughter. Usually, when I assured them that I was not being beaten at home, Mum was allowed to re-enter the room. We migraineurs can find it hard enough to be taken seriously, so as a younger woman, just out of her teens, I thought it would be helpful to have a parent there.

I tried going to see Consultants with Dad, he’s an imposing figure. He cuts a handsome figure in his tailor made suits, and is very good at the ‘do you know so and so’ game, as his elder brother was a prestigious Doctor. He’s also had surgery on nearly every bit of his body, so always has some Kevin Bacon 6^th degree of contact with most medical person. His years as a Head Hunter always come in use, when debating treatment options he often asks, “Which one would you give your Daughter?” But even as recently as August 2011, Dad and I went to see a new spinal surgeon together and met a stony wall of… ice. Neither of us could crack this guy. By now, after 13 years, I’ve become much more confident and pretty good at ‘pitching’ to new Consultants. But it’s an exhausting process, you’ve got to condense your long complex history, past tried and tested treatments etc, into under an hour. Yes, I have a 2 page medical record CV and, even though I say so myself, I think I’m damn good at telling my story in a useful way. I now know the key questions most Doctors will ask as I’ve seen so many specialists over the years, so fit that in to my spiel. But this guy… he didn’t even want my full pitch. The cheek.

I returned for the follow-up and test results with Mum, could she crack this man? At least get him to look me in the eye? At this time I was in a bad way, half my face was numb, I couldn’t feel my left hand, plus the migraines were chronic, 3-day wipe-out affairs. I asked him several questions, including why, in his opinion, I was in so much pain. I was referring to the neck/spine issues for which I’d been referred to him. He replied, “I don’t know. You might not even have migraines. Don’t jump the gun.”

I am never lost for words. But I was lost for words and actually had to hold my breath to stop from screaming or crying. Putting aside the fact that this guy wasn’t even a neurologist - he had just trashed my life, essentially. I had just quit my job because my health had deteriorated to such an extent and this man was offering me no help. Mum calmly stood up, thanked him for his time and led me out. I had placed so much hope in this new Consultant; I was destroyed. As we headed downstairs in the lift Mum could see I was on the verge.

She took my hand and said, “Don’t you cry. Don’t you let him win. We still got some valuable information and test results from this and we will simply find another Doctor who can help us.”

“But I can’t feel my face!” And of course I then burst into tears and Mum hugged me. We got a cold letter saying basically, in his opinion, there was nothing much wrong with me, I was fit to work, could even run a marathon. The letter began with “She attended with her Mother.” We found another Doctor.

“Ah, you brought your Father, brilliant! I never think patients should come to new appointments alone, so much information to digest.” I could have kissed this new Doctor! He was rather handsome. And for your mild information further test results showed there were, in fact, a few things wrong with me. For your even milder information, I asked for the Radiologist’s report, direct from the lab, for the various tests done by mean Doctor, and they were incredibly useful and enlightening.

I could give you countless examples of how having my parents at various consultations over the years has been life saving. My Mum notices aspects of my migraines I don’t. For example, I never knew that my left eye starts to droop and shut. She's also a migraineur too, so her input is useful. Dad’s near perfect recall has been invaluable for discussing medication, dosages and treatment plans. They have had the courage to stand up to top Consultants who have belittled me (I still remember with glee the day Dad “dismissed” a famous Consultant who refused to listen), and they've given me the courage not to give up the search of finding that precious thing – a Doctor who is on your team and will work with you to get better. I would have given up years ago if it wasn’t for them – when the first Doctor I ever saw said “Well, I’m not sure there’s much more I can do”. You do not want to know what Mum said to him. Do not mess with Mothers.

It may seem strange to anyone reading this to know that a woman in her 30’s take a parent with her to the Doctors. But when I’m grey and wrinkly I’ll be taking my super rich, 6ft 3 eco-architect husband, and going with him, to important medical appointments. I once made fun of a friend at University (just before my saga began) who was off to see his neurologist for his epilepsy. He was leaving a lecture early to meet his parents who were attending with him.

“Your parents are going with you?” I scornfully asked. He looked at me as if I was insane. “Of course they are! It’s my health, my life. I have big decisions to make.” And he said they wanted and should be involved. I now completely understand what he meant. If I decide to try a new preventative, for example, that can have huge repercussions, and it’s amazing to have someone to debate the pros and cons of this with. Busy Consultants are often in a rush and may want to push decisions or medications on you – having a second person in the room to ask questions, listen and offer support can be vital. Of course Mum can sometimes be over-protective and make annoying, embarrassing Mum comments – but I’m much rather that than face this roller coaster, long road, alone.

Plus, if like me, you tend to get a little hyper and find the whole process exhausting you may simply need a lift home.

Other views:

http://www.medicinenet.com/script/main/art.asp?articlekey=15187

http://migraine.com/blog/6-tips-for-optimal-results-at-your-doctors-appointment/

http://www.kevinmd.com/blog/2010/09/bringing-friend-family-member-doctors-appointments.html

Star Trek Device to Beam Away Migraines??

2013-02-08T02:36:00.001-08:00

Beam Away My Migraine, Scotty!

Ok I'm not a Trekkie so I've probably committed some terrible cardinal sin - though I did love the film adaption and am very much looking forward to the sequel; especially as it will star Sherlock Holmes!

Anyway, the point is yesterday the papers were filled with a Star Trek looking device (below left) that could, potentially, 'beam' away migraines

See the similarity!

Yes, you may look like a prat but if it works...

It's called CEFALY and apparently uses TENS technology, as in a TENS unit! Remember those TENS units I'm always banging on about and you may see me wearing and mistake for my I-pod ear phones? i.e It sends a tiny electrical stimulation to certain nerves believed to be involved in the migraine process. Yesterday results of a small study in Belgium were released that looked at the efficacy, and safety, of the device which are explained wonderfully by Teri Roberts over at Health Central. In summary, it does sound promising but the study was incredibly small - but side effects seem to be non-existant and the results similar to daily preventatives. I say, let's keep an excited eye on this one.

All kind of clever gadgets and gismos are popping up at the moment. Indeed I even signed up for a trial that puts a gismo up your nose at the first sign of a migraine - but for various reasons I've not been able to take part, partly because you have to get to the hospital where the trial is taking part within 2 hours of the migraine starting. But I'll be really curious to see the results. Just last week I had a go with the Spring TMS device, several of my migraine buddies have found it to be life saving.

Below is a video talking about another implant, stimulation device which sufferers 'turn' on with a hand held, remote control switch. Just to warn you this is a hilarious spoof video....to cheer you all up on a Friday!

Personally, I think it's great that all theses gadgets and devices are being created. Less side effects (hopefully) and it means technology companies investing more money into the migraine market. However, don't try any without first talking to your Doctor! Doh! The way we're thinking about, and treating, migraines does seem to be changing. To infinity and beyond...as Buzz Light Year would say...um...

More information:
http://www.cefaly.ca/#whatiscefaly
http://www.nhs.uk/news/2013/February/Pages/Star-Trek-headband-for-migraine-shows-promise.aspx
http://www.healthcentral.com/migraine/c/123/158990/transcutaneous/?ic=4027
http://migraine.com/blog/migraine-prevention-news-peripheral-supraorbital-transcutaneous-stimulation/
http://www.dailymail.co.uk/health/article-2274934/Could-Star-Trek-headband-help-banish-migraines.html#axzz2KIbPJHaY

Tweet & Meet Migraineurs - in which I meet my NMC buddies!

2013-02-02T05:05:00.004-08:00

"Yes, but what IS Twitter?"

I sigh. I've already spent about half an hour trying to explain to my darling Father what Twitter is. It's actually quite hard. Try to describe, out loud, what Twitter is without showing someone, it's virtually impossible....

I never really understood the joys of Twitter myself until I started this blog, then a whole community of fellow migrainuers revealed itself to me. A community that totally 'got' what having migraines meant, that didn't judge or question. Of course there are some complete nut jobs out there who think they really are best friends with Kim Kardashian just because they can Tweet her. On the whole, however, the Twitter community of migraineurs I've 'met' in the past year have been incredibly supportive, helpful and loyal. It's quite bizarre really - the migraine twitter gang - as I like to call it - are almost more understanding than my 'real life' friends who don't have migraines.

Twitter can lead to 'real life' friendships too. On Wednesday I met, in the flesh, two such migraine twitter buddies - the fabulous Fran (aka Skullsandponies) and Fiona, (aka Dr Fi). Both have featured prominently on this blog: Fran most notably when she was going through a tough time with Medication Over-Use Headache and Fiona, who did an incredible guest post on Hypnotherapy.

Fran in the snow!

Dr Fi!

What really ties us three together, however, is the National Migraine Centre. Fiona and Fran worked out that they had appointments on the same day, in fact right after each other, this past Wednesday. And as I needed to book in for a check-up myself - the three of us met for lunch after their appointments.

May I say, we had our own version of The Migraine United Nations. Fiona and Fran discussed the consultations they had just had and their progress, I debated whether I should start tapering off Topamax and we basically just revelled in being with like-minded, ambitious, 'young', migraineurs and all the issues and complexities that this brings to life.

Fiona even let Fran and I test out her TMS device. I'd just like to say, you should not try this at home without first consulting your Doctor! We, er, were very careful.

Me trying the Spring TMS Device

Re the above picture, I'm not wincing in pain, I'm laughing. We did get some pretty strange looks. I swore I felt a hot flush after my first 'shot' with the TMS but Fran reckoned that was just embarrassment at the table of fellow lunchers laughing at us. Fiona, incidentally, is thrilled with the TMS, (which she got through the NMC) especially as Triptans don't work for her.

Being that we are, well, migraineurs, we all started to yawn, fade and agreed that socialising is pretty knackering. Personally, I always find lunches the hardest.... never worked out why! I also think seeing your Migraine Specialist and talking about progress/options is always quite draining. But we three were a happy bunch as we parted - and I'm sure the Migraine United Nations will be meeting again to put the world to rights.

Thank you National Migraine Centre - and Twitter - for making this possible.

p.s Fiona will be speaking at The Science Museum this coming Wednesday at their Pain-Free Funfair, on her experiences as Pain Sciencist and Migraineur.

http://www.danacentre.org.uk/events/2013/02/06/687

p.p.s - if you are getting troublesome headaches or migraines, please pick up the phone and book yourself an appointment at the NMC - you don't need a GP referral - just think you could be joining us for lunch too! Over lunch we all agreed that it was so lovely to find a place where we felt so supported and found Doctors that really listened and were on our side. Get your butts there!

http://www.nationalmigrainecentre.org.uk

Sleep, perchance to dream...I wish!

2013-01-24T10:09:00.001-08:00

This is a typical scenario if I don't sleep well:

Scene: Tube Station, Morning.

Innocent Bystander: Miss, I think you dropped your train ticket.

Me: WHY GOD, WHY!!!?!!! [starts sobbing hysterically on Innocent Bystander]
I'm not normally like this, I just didn't sleep properly.

Innocent Bystander: Your nose is dripping on my suit. I'm very sorry, but that's my train so I need -

Me: I just can't sleep [sobbing harder now] Do you understand? I HAVE to sleep.

Innocent Bystander: I've just missed my train and I'll be late for work now, so I -

Me: Why do you hate me?!

And so on and so forth....

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Just to be clear, the above hasn't actually happened, but similar scenarios nearly have. If I don't sleep I'm a wreck. I'll pour orange juice into my morning tea instead of milk. I'll cry if someone asks me a totally innocent question but more importantly, a buggered up sleep pattern leaves me vulnerable to migraines. I think migraines also make me cry.

We migraineurs are told from birth (well from the moment we are diagnosed) that a 'regular sleep pattern', or (this is my favourite) 'good sleep hygiene' is VITAL TO OUR LIVES. Too little or too much sleep can trigger a migraine! See it's stressful already!

I was also brought up by a mother who believed that lack of sleep was the root of all evil in the world, and most illness. As such, I do actually believe that there are very few problems that can't be solved by the mighty power nap. Try it - it's especially good if accompanied by a cup of tea, a copy of a trashy magazine such as Hello! or OK and chocolate (which I can't eat anymore). But apparently naps are bad for 'sleep hygiene'. Or long ones are because they ruin your chances of getting to sleep again at night. So I try not to indulge too often.

This is my cat, Chipster, asleep!!

He sleeps so heavily I could do this to him! Serves him right!

Recently, however, I have been plagued by insomnia. This is not a new problem for me. I've blogged here about how a rude interruption in sleep triggered a migraine. When I was at my worst migraine wise, in '04, I had no regular sleep pattern. The first thing my incredible physio rehab lady did was get me to write down when I went to bed and when I got up. She told me to stop obsessing about how many hours of sleep I got but to become aware of trying to regulate the times, to keep them as similar as possible. i.e the aim is to get up at the same time every day, even on weekends. Many migraineurs get 'weekend migraines' and the theory is it might have something to do with a variation in routine. i.e they sleep in longer, suddenly eat/drink do different things. Every migraine specialist will tell you that the migraine brain likes routine. Dull I know.

My problem with all of this is HOW THE HELL DO I GET TO SLEEP AT NIGHT
and when you wake up at 4am with a raging migraine, have to give yourself an injection, the last thing your body wants to do is get up at 7am when the alarm goes off. Sleep does help you heal after all. Similarly, when a migraine starts it's often wise to try and get to sleep, for me that's the best treatment (along with my triptan) so I'll get myself to bed if it's the afternoon or morning. Obviously, this can mean it's harder to make yourself go to bed again at a sensible time later that night. I do try to, however. I know I feel and function far better when I achieve this ideal pattern.

When a migraine has disrupted my routine I like to think of it as migraine jet-lag. So even if I've spent the afternoon in bed with a migraine, I'll still make myself go to bed and get up at a sensible time. If I do get a migraine in the middle of the night I won't, however, force myself to get up early as that could risk the migraine worsening. But treating it like jet-lag, i.e trying to get back to 'normal' time as soon as possible is how I try to approach it. But I do wish more specialists would recognise this aspect of sleep difficulties for us migraineurs. I do know I need to keep a regular routine, I do! But it's not that simple.

What drives me crazy are the thousands of really un-helpful tips that abound. When I was frantic with lack of sleep, which I'd like to point out is used as torture by war criminals, I asked a G.P for help and they actually printed off an information sheet from Google!! I can do that myself!! I do know all the sensible things one is meant to do. Another Doctor I saw told me not to drink any liquids two hours before bed, as needing to pee can wake you up, not to drink alcohol 4 hours before - see the recent study that was released earlier this week saying alcohol disrupts our sleep cycle. This Doctor also told me not to go to bed before midnight, rubbishing the rule I'd heard that the hours before midnight count for 2 after? I know to keep my bedroom a cool temperature, but not too cool, to try to unwind before bed, I've tried all the different sorts of herbal night remedies and made my room stink with Valerian. I've tried meditating, which I should try again as I so want to be Julia Roberts in EAT, PRAY, LOVE but my fail safe is usually the good old Audio Book.

I think at the moment Christmas and New Year, and all the fun they entail, maybe derailed my pattern? I've noticed many other migraineurs are having a tough January and sleep troubles too. So, basically I just wanted to moan. Last year I attended a fascinating talk hosted by The Migraine Trust at the EHMTIC conference on Sleep and Migraines by Alex Nesbitt (a specialist Registrar in Neurology and Research Fellow at a sleep centre). To be honest I"m too tired to summarise his talk now but read this brilliant article which will tell you lots of important and useful things about the relationship between migraines and sleep. For example, did you know there's even a 'sleep' headache, 'Hypnic Headache', that migraines are more likely to occur between 4am and 9am - and lots of other clever things our body's are designed to do at night.

Now if only I could get to sleep in the first place.....

p.s Tips & info below as usual - and more spelling & grammar mistakes than usual as I'M NOT SLEEPING!

Further Info & Advice:
http://www.bbc.co.uk/news/health-21147780
http://www.migrainetrust.org/research-article-sleep-and-migraine-reluctant-bedfellows-2012-14811
http://www.migrainetrust.org/factsheet-hypnic-headache-10893
http://www.mayoclinic.com/health/migraines/HE00004
http://www.achenet.org/resources/sleep_insomnia_and_migraine/

Botox Campaign For Chronic Migraineurs - Guest Blog Post!

2013-01-19T09:11:00.002-08:00

Hello lovely peoples, today I shall be handing over to the fearless and feisty Maggie Austin. You may recognise Maggie from past posts such as 'WHAT DOES A MIGRAINE LOOK LIKE' - but today she's writing about Botox for Chronic Migraine patients and a campaign she's recently launched that needs all of our support!

Over to you Maggie!

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Dear Readers.

I’m Maggie, I’m 24 and I go to Derby University. I’m studying psychology and I think I want to specialise in something to do with pain management and neurology. Wasn’t my original plan but I think my Chronic Migraines have changed my perception of what I want to do.

A self portrait of Maggie

And her kitten Ella Freud!

Botox – Commonly known as being used to look younger, plumper and kind of funny looking if you use too much.

I’m guessing at least some of you migrainures out there will know of its other use however. Botox is now an officially approved treatment for Chronic Migraines on the NHS. Of course this is subject to some very strict and also a bit ridiculous guidelines. Namely being, 15 headaches a month, 8 of which are migraines; this part is not ridiculous. It gets a bit stupid once you’ve actually started having the treatment, after 2 treatments 3 months apart you have to have improved by a third, but still meet those original criteria or you are no longer deemed as chronic and can, therefore, no longer qualify for the treatment.

I have all this yet to come.

I have been suffering with different variations of migraine for the last 7 years. In the last 2 years I have not gone a day without some form of headache/migraine. I have tried every treatment my doctor and a local neurologist could think of.

So I went to the, quite frankly, AMAZI NG National Migraine Centre – a wonderful charity that offers specialist help to all of us sufferers while merely asking for a donation. I spoke with one of the specialists there and explained the fact that everyone was out of ideas, and how difficult regular life had become, especially the fact that every time I saw someone who wasn’t my regular doctor I got accused of Medication Overuse Headaches (MOH).

He was incredibly understanding and after some discussion he informed me that I don’t suffer from MOH and I am, in fact, just a Chronic Migraine sufferer. He suggested Botox, telling me that he believed in treating a problem at its source whenever possible. One of the most reassuring things about the whole conversation was him telling me that my problem is, in fact, fixable… not a word I ever expected to hear about my migraines.

Downside – it turns out it is actually easier to have surgery than to get Botox on the NHS. Not only are very few NHS doctors trained in how to do it for migraines (I’m opting to have mine at the National Migraine Centre), but you also first have to get your Primary Care Trust to actually approve the funding for it! NICE guidelines state that they have 18 weeks, but apparently they like to drag their heels, so the only way to get it in that period is to kick up a fuss.

Points at which Botox can be injected (but it does differ)

I personally am quite inclined to do that; they will have a very difficult time ignoring me. My concern is for those who aren’t quite as feisty as me, but still need this treatment. Hence why I am trying to stir up a bit of trouble to see if we can get people to hear that. I have already been in touch with my local MP – whom I have yet to hear back from, but I’m not surprised. I let them off over Christmas but now they'll have to put up with me all over again!

I have also started an online petition to try and get someone to take notice of this issue, so help me get involved:

http://www.campaignengineroom.org.uk/botox-for-chronic-migraine-sufferers

The NHS seems to have a rather dismissive attitude towards us and we really need to change that (I sound like I’m rallying a protest or something! Anyone got any picket signs?!).

WHO’S WITH ME?!

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Go Maggie!!! I'm with you!!! I know that we all got quite over-excited once NICE said Botox would be available for Chronic Migraine patients on the NHS but, as you can see from the above, it's not quite as simple as it sounds. There are strict criteria to meet before you can even have round 1. So let's all sign this petition as I know several Chronic Migraineurs who have got their lives back thanks to Botox...

More information:

To book an appointment at The National Migraine Centre simply call: 020 7251 3322. A migraine specialist will work with you to tailor a treatment plan to meet your needs. A GP referral is not needed and payment is via donation as the Centre is a charity, most major Private Insurance Policies are accepted if seeing The Medical Director.

Here is the Centre's fact sheet on Botox

http://www.migraineclinic.org.uk/wp-content/uploads/2012/03/Factsheet-Botox-12.1.122.pdf

The December News Letter (featuring an article on getting Botox on the NHS)