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

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!

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

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

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

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"

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

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/

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