Sunday, 21 April 2013

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

Tuesday, 16 April 2013

"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/

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! 

Friday, 12 April 2013

MIGRAINEUR OF THE MONTH: MISS APRIL!




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

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. 
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