Tuesday, 25 March 2014

High Heels and Migraines. Manolo Blahnik we worship.

Oh ye shoe gods….. I always knew there was a reason I was especially riveted by the lustrous beauty of Manolo Blahnik shoes. It turns out Mr Manolo Blahnik, himself, gets migraines.

Once again, this provides further credence to my theory that migraineurs are creative geniuses whose brains are just bursting with, well, genius.

In a recent interview with the Guardian Mr Manolo revealed that:

"Migraines have been with me all my life. They're a part of who I am. I inherited them from my father, and I've made my peace with them."
Picture taken from Guardian Article 




I now fell a great sense of duty to immediately go forth to Westfields (or Sloane Street) to spend a 12 month pay check on a precious pair of Manolo's - simply to support a fellow migraineur. In fact, I wonder if migraineurs get a discount? 


Saturday, 22 March 2014

'Have you ever'…..tried the star treck Cefaly device!

Recently the Cefaly - Star Treck looking - device got FDA approval in the USA. You can read more about it here. Last year news of this funny look gadget reached the national news and I collected some of the reviews here.

The fabulous Kerry has written a review about her experiences with the device. Several of you, dear readers, have asked if I have ever tried the device. I have not, but know others who have, whom I'm hoping will share their experiences below.

So - have you ever tried the Cefaly device?





















If you have: did it work, how long did it work for, where there any adverse side effects, would you recommend it to others? All these questions!!


Friday, 14 March 2014

Have you ever….tried Medical Marijuana for migraines? New series of Q&A from YOU!

Starting right this second, every Friday from hence-forth, shall be the:  'Have you ever?' series.

Each Friday I'll post a question from a reader of this blog and hope that you, other dear readers, will answer and help out as best you can! If you want to pose a question, or ask this migraine community about anything from the best ice gel packs, to helpful apps, to how to 'come out' to your boss as a migraineur, simply send me an email at victoria@migrainemonologues.com.

1st question: Have you ever….. tried marijuana to treat migraines? 



 I 've suffered migraine since I was 12. I'm 28 now and the last 2 years have been very difficult, going to work feeling like sh*$ is horrible, I'd been absent many times because of it. I'm from Mexico, and it's very difficult to find good neurologists or affordable medication here in Playa del Carmen. Getting Botox is around 500usd. 

After many years of trying different pain killers, my stomach is a mess, I've become very anxious and my family and boyfriend have to deal with me and my bad days,  I have been researching about the use of Marihuana to treat migraine.
 I would love to read if you or someone in your blog have experienced with this and your thoughts about it.



Thank you so much reader 'N' for the above question. I know many of us will be able to relate to your experiences. 

So - over to you dear readers. Please leave your responses to the questions in the comments section below. 

Sunday, 23 February 2014

The Dreamwalker Author - Samantha Shannon on how migraines inspired her debut novel, The Bone Season

The Dreamwalker Author.

Samantha Shannon, author of The Bone Season, talks about how migraines inspired her debut novel.

Samantha Shannon, the New York Times best selling author and winner of Red Magazines ‘Women to Watch’ category in 2013, is often asked if Paige Mahoney, the heroine of her dystopian novel The Bone Season, is her alter ego. When I meet Shannon on a wintery afternoon in Covent Garden’s Seven-Dials (the very place where Shannon initially drew inspiration for her work), she emphatically replies “Not at all”. I, however, respectfully beg to differ.


The Bone Season is the first installment of a projected 7 series of novels, which will be published by Bloomsbury, the same publisher as The Harry Potter novels; which inevitably means Shannon is constantly touted as the next J.K. Rowling. Shannon is now famous, however, for writing the first draft, getting an agent, securing a 7 book-deal, and having the novel published all whilst studying for a degree in English Language and Literature at St Anne’s College, Oxford. Not the average university experience. Likewise, Paige Mahoney, is not your average teenager.

“The year is 2059. Nineteen-year-old Paige Mahoney is working in the criminal underworld of Scion London, based at Seven Dials, employed by a man named Jaxon Hall. Her job: to scout for information by breaking into people’s minds. For Paige is a dreamwalker, a clairvoyant and, in the world of Scion, she commits treason simply by breathing.” (Summary extract from The Bone Season’s Facebook page.)

Now, I’m not suggesting that the uber talented Shannon commits treason on a daily basis, or has special clairvoyant gifts – she definitely has a gift for writing and creating strange and surreal worlds – but Paige and Shannon do have one major similarity. They both suffer with migraine and headaches.

Shannon was just 17 years old, two years younger than her feisty heroine, when she had an abrupt and dramatic initiation into the world of migraine. She was baby-sitting her little brother one afternoon when: “I suddenly went blind”.  

Understandably, she panicked. Over the phone, her Mother suggested that brother and sister immediately go to the nearest Opticians. Amazingly, staggering and stumbling up the street, Shannon found herself sitting safely in an Optician's chair. “Please help me, I’ve gone blind!” she begged the Optician.

Asked to describe, exactly, what she could see Shannon realized she was not, in fact, totally blind. Big glittery zig-zags with a ‘C’ shape, and a brown cloud were badly blurring her vision. Luckily for Shannon, the Optician quickly realized she was suffering with migraine Aura. She was immediately referred to a GP who prescribed Sumatriptan, the medication Shannon still takes to this day.

After this dramatic episode, Shannon later discovered that, as with most migraineurs, migraine ran on both sides of her family. She learnt that her Father got visual Auras, and her Mother got the pain of migraine. Unluckily, Shannon gets both. She recalled how, as a child, her “Mum used to get migraines so badly we had to take her to hospital because she was in such pain, it was just horrible.” Shannon’s Mother, never having had Aura herself, did not immediately connect the dots when her daughter rang saying she thought she was going blind.

Shannon has now acclimatized, as much as is possible, to her Auras and the pattern of her migraines. “The way I know it’s happening is that I’m sitting typing and a couple of letters will suddenly disappear. And I know ‘here it comes’. Slowly I get a wavering around the edges of my vision and it goes into a rainbow type zig-zag, then I get a brown haze, it’s quite strange”.

From http://www.anthonypeake.co.uk/forum/viewtopic.php?f=30&t=1845

As a writer, Shannon has “this awful fear of seeing the letters start to disappear because I know I’m going to be out of action for a while and that terrifies me. But I know I can cope.”

After the Aura, which can last up to 45 minutes, Shannon is hit with “crushing pain around my forehead and eyes”. All she can do is take her Sumatriptan and lie in a dark room waiting for it to pass. Then, as many migraineurs know all too well, comes the Postdrome phase. “I get bad Postdrome, awful, for up to three days. That’s probably one of the worst aspects to it all”. Shannon describes how she’s left feeling drained, as if all her “energy has been knocked and sucked out of me’. It’s a very unpleasant feeling that many migraine sufferers can attest to.

Which brings us back to The Bone Season and Paige. Shannon is refreshingly honest and open about the huge inspiration migraines provided for the colourful world of her book and it’s main character. Shannon’s own Aura were, indeed, the main source of inspiration. In the novel, Paige is something called ‘spirit blind’ but she can see shapes, colours and tell where a spirit is. “So, I picture her seeing things with a disruption in her vision similar to my migraines”. Indeed, clairvoyant characters in The Bone Season have different coloured auras, the whole concept of which, came from Shannon’s own experiences. Shannon wanted the book “to have a very visual aspect to it” and I, for one, can’t wait to see how the film adaptation of the book will bring to life the different auras. Furthermore, she wanted the clairvoyants to feel like “biological – not magical [beings]– something to do with the brain and body, so migraines really helped me develop that idea.” In this sense, Shannon is reminiscent of Lewis Carroll, whose migraines Auras are said to have inspired his ‘Alice’s Adventure in Wonder Land’ novels.

Migraines and headache play a significant, yet subtle, part in The Bone Season in differing ways. “I wanted to wind it [migraine] through the book because it’s such a big part of my life and I really wanted to use it in a positive way.” Shannon confesses that she wakes up most days with a headache, and that the physical pain aspect of her migraines was also major inspiration. “Paige is always in some form of pain, quite often a headache”.

Indeed, in Chapter Two of The Bone Season, the regularity of Paige’s headaches are noted when she goes to stay with her Father.

“As I spoke, a sharp pain lanced through the side of my head….. ‘Actually, I’ve got a bit of a headache,’ I said. ‘Do you mind if I turn in early’. He came to my side and took my chin in one hand. ‘You always have these headaches’.”

Shannon describes how Paige’s migraines are triggered when she uses her clairvoyant gift, when she “Attempts to push her spirit out. In one of the last chapters, when her dreamscape is badly damaged – there are jagged lines in her visions – and nearer the beginning she describes there being ‘fire in the very tissue of her brain’. So she does essentially have migraine, but I didn’t want to spell it out – I wanted it to be more subtle.”

In Chapter One, Paige uses her abilities to attack two Underguards on the train in order to avoid arrest but immediately suffers the consequences:

“Pain exploded behind my eyes. I’d never felt pain like it in my life: it was knives through my skull, fires in the very tissue of my brain, so hot I couldn’t see or move or think”.

The above is, I believe, one of the most accurate descriptions of migraine I’ve ever come across. I first listened to the audiobook verion of The Bone Season during a migraine attack of my own. But as soon as I heard the above (about 5 minutes in) I sat bolt upright in bed, knowing instinctively that whoever had written those words simply had to be a migraine sufferer them-self. And so began my journey to discover more about the books author.

https://www.facebook.com/SamanthaShannonAuthor
Shannon's own migraine triggers are, perhaps, more common place. She has noticed that the frequency of her migraines tends to coincide with changes in sleep patterns and periods of high stress and anxiety. “When I’m in a stressful situation such as A-Levels, degree finals or the last stages of editing a book they tend to get worse”. Shannon has just finished the final manuscript of her second book, the eagerly awaited sequel to The Bone Season, the title of which has just been announced as ‘The Mime Lord’, so when we meet this Tuesday 25th, for our live Book Club chat, I hope to hear that she hasn’t been suffering too much for her art! Indeed, Shannon’s process as a writer, especially when she was at Oxford, was not conducive to the regular life-style patterns advised for migraine sufferers. As noted above, she wrote the first draft of The Bone Season during her second year at Oxford, so mostly worked late into the night and at weekends, around her regular course work. She’s also found that her brain seems to ‘wake up’ and inspiration strikes, when it gets dark. Again, not ideal when breaks in regular sleep patterns are a trigger.


As Shannon is becoming increasingly aware of her triggers and coping strategies, so will Paige. Shannon describes how when Paige’s spirit leaves her, it rips, like cloth ripping, as her spirit pulls away from the body and this is what causes the migraines, the pain. “But it is something that she will be able to deal with as the books goes on. Warden describes it as a muscle… and eventually the muscle becomes strong but initially it really hurts. So that’s how she’s going to deal with it, through practice’.

I asked Shannon how on earth she dealt with the pressure of being at Oxford, writing a novel and living with migraines. “In the 1st year I was constantly in bed with migraines. Friends would text to find out where I was but I would just have to lie in the dark”. Luckily, Shannon had a supportive group of friends, who would kindly bring nourishment, mainly in the form of sandwiches, when Shannon was un-able to fend for herself. Now travelling the world on international book tours, Shannon not only has to cope with life in the public eye –  but with the various issues that travelling brings to the migraineur. Shannon told me about a recent tour to Australia where she realizes, with horror, that she had forgotten to bring any migraine medication with her. A publicist brought her a dissolvable vitamin like solution, to help with the Postdrome phase, that Shannon later learned is used in Australia to cure hangovers! She’s pretty sure everyone thought she was drunk, or genuinely hungover, another common trait of life with migraine.

The Lovely Samantha, pic from this Guardian Article

 So, even though Paige will learn to deal with the pain, Shannon assures me that migraines and headaches will continue to make subtle appearances throughout the series. “Oh definitely, it’s a huge part of Paige’s reality, having this constant reminder of her pain. Her gift is quite a painful one to have. She has one of the most powerful clairvoyant gifts and I wanted it to have a physical backlash”.

For Paige, and her creator Shannon, migraines seem to be both a blessing and a curse. When Paige uses her gift, she suffers agony but, in a somewhat sinister turn, she can also cause migraines in others. In Chapter One, after the attack on the Underguards, Paige notes: “I hadn’t meant to kill them, I’d meant to give them a push – just enough to give them a migraine, maybe make their noses bleed.” Through flashbacks we also learn that this is something the young Paige, when at school, would inflict on cruel classmates. This makes Paige sound far darker than she really is! But I must confess, I’ve often wondered what it would be like to make a doubting friend, Doctor, un-believer, suffer a migraine attack.

At the end of the day, if it hadn’t been for suffering migraine Aura, The Bone Season would not exist in its current form. So, it has been a blessing and a curse for Shannon. Indeed, Shannon wears her migraine as a badge of honour.  “I would never think twice about not acknowledging the fact that I have migraines. I’m almost proud of it. It’s a part of who I am, I wouldn’t ever think about hiding it. It’s even on my twitter page!” So we migraineurs must take huge inspiration, and hope, from Shannon, and Paige. Both have managed to utilize this debilitating condition for creative gain.

So, although Shannon denies that she is Paige, I think they are both humble visionaries, with an especial talent, and we should all keep our eyes on the futures of these two exceptional ladies, as great things lie ahead. Furthermore, anyone who suffers with migraine, or any invisible and chronic illness, should feel emboldened by their example and know that they have a new champion in Shannon.

“We are the minority the world does not accept…. We look like everyone else. Sometimes we act like everyone else. In many ways, we are like everyone else. We are everywhere, on every street. We live in a way you might consider normal, provided you don’t look too hard.”



Samantha Shannon will be joining us LIVE for Migraine Monologues Book Club this Tuesday 25th at 6.30pm (GMT) and 1.30pm (EST). All our welcome to join in our discussion. We will be talking in more depth about the inspiration for the characters, Shannon’s own literary heroes, Paige’s taste in music and whether or not the Raiphaim can get migraines! It is very rare that such a successful Author is willing to talk so openly and honestly about life with migraine, so don't miss this chance to be involved. 


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 on TUESDAY 25TH FEBRUARY, 6.30PM (GMT) 1.30PM (EST)

Wednesday, 12 February 2014

LIVE chat with Samantha Shannon - Book Club

I am incredibly over-excited to finally, officially, properly announce that the one and only Samantha Shannon will be joining us, live, on TUESDAY 25th for Book Club!!

Samantha Shannon


As usual, our 'virtual' book club takes place in a password protected chat room. Instructions and further details on how to take part are at the bottom of this post. ANYONE is welcome to join us so please do spread the word.

Next week I'll be posting an interview with the lovely Samantha talking about her migraines and how they effect her writing. Plus, a review of her epic debut novel, The Bone Season, will be posted a few days before the book club meeting.

So, you still have plenty of time to read (or listen) to The Bone Season and think about what questions you'd like to ask Samantha. It is very rare that someone in the spot light is so willing to openly talk about migraine so don't miss out on this opportunity! It's also rare that migraine, in various ways, seeps into a piece of fiction in such a subtle and profound way.

Picture taken from http://www.boneseasonbooks.com
You can learn more about Samantha and her writing process via her brilliant blog.

You can learn more about The Bone Season via its website.

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 on TUESDAY 25TH FEBRUARY, 6.30PM (GMT) 1.30PM (EST)


Related posts and more info:
http://www.migrainemonologues.com/2013/12/book-club-update-bone-season-by.html

Friday, 7 February 2014

Empathy versus Sympathy

What is empathy and how is it different from sympathy?

Watch this utterly gorgeous 3 minute video to learn the answer.




I'm definitely guilty of being a 'silver liner'…..and like the Goat (Deer?) I probably would offer you a sandwich, actually I'd offer you a G&T, but I'd have one with you.

So, to all my fellow migraineurs out there, who are stuck down in that dark hole, who are overwhelmed and lost... I know what it's like down here, I'm here with you. You are not alone.


Happy Friday x

Friday, 31 January 2014

Has Topamax made me go blind?! Part three.

High Street Optician. A rainy wednesday. 

Half way through my eye exam the lovely eye lady says:

"Oh yes, some cataract here."

EXCUSE ME WHAT THE BLEEP BLEEP I scream inside my head.

"Terribly sorry," I politely mutter "Did you just say cataracts?". Turns out she did say cataracts - in both bloody eyes. I stop listening to anything she says after this as I'm just so shocked. I'm not Ninety, you're not meant to get cataracts if you're not Ninety!! Eye lady was also surprised at me having such a condition at my (terribly youthful - ahem) age.

Luckily Mum happened to be in the local M&S next door. I go and find her.

"Mummy, I'm going to cry, I'm going blind and I have cataracts!" I say, very bravely, managing not quite to cry.

"Don't cry. I'm sure you're not going blind and cataracts is very easy to sort. Besides you can learn brail."

She didn't actually make the brail 'joke' until later in the day when I was crying. I was crying because a) I'm a slight drama queen and b) I'd had a crappy week and c) I was completely shocked that I had granny eyes and d) I knew, deep down, that my old friend Topamax was responsible.

Once again, this was karma paying me back. Topamax was not going to turn me into a slinky super model (thanks to it's alleged weight loss properties) who made mega bucks selling the stuff on ebay (thanks to everyone else in the world wanting to get hold of a weight loss drug), as I had so carefully planned. Instead,  I was going to go blind! Yes, the mild cataracts had, in my head, transformed in a eye eating disease that would ruin my life forever.

I decided, sensibly, to seek a second opinion. Apart from possibly getting a seeing eye dog the idea of having cataracts didn't sound very fun to me. So I went to a proper Optometrists and had my eyes tested with every new fangled gadget under the sun. It was almost fun, I had to press lots of buzzers when I saw lights flashing up in certain places. It was a bit like playing a video game. I was going to win!


I also convinced myself that the proper Optometrists would reveal that my eyes were perfect, it was all a silly mistake. I do have incredibly bad eye sight. If I take off my glasses the world is a big whirly fuzzy mess. So I had thought my increasing need to squint to see the subtitles on Borgen, was just the usual decline. But alas, no. I have something called Posterior Subcapsular Cataract - in both bloody eyes. But it's not very bad and, hopefully, with some new contact lenses, my eye sight will be back to normal and there will be no need for any laser/surgery options if the Cataracts doesn't spread. In short, I will not go blind. And I'm not allowed a seeing eye dog.

The proper Optometrists asked if I had taken steroids, as the type of Cataracts I have is usually associated with steroids, certain medications, and conditions such as diabetes etc. I then told her about the Topamax. She nodded in an 'oh yes, I know all about that' type fashion. She even mentioned another patient of hers who had had visual problems associated with Topamax. Two years ago, when I last had an eye exam, there was no Cataracts of any kind. Two years ago I wasn't on Topamax.

Every side effect under the sun can possibly be blamed on Topamax, but my Neurologists very carefully and clearly warned me about eye issues - mainly glaucoma and sudden worsening of vision.  Cataracts isn't usually a listed side effect  but I found it listed on this information packet.  It also just seems too much of a coincidence. One study shows that of 21, 362 patients on Topamax %0.65 developed cataracts. But this isn't a very large number. I searched around on patient chat rooms and have subsequently found out that others have also developed cataracts, even those who were on the drug for a relatively short time and a low dose.

I have, also, had small amounts of steroids over the last two years with all the nerve block injections, so maybe the two combined are what have given me granny eyes?



Despite my initial shock and dramatic despair - I still think I've been very lucky. I'm now off Topamax (simply because my Neurologists said it had done its work for me and it was time to wean off) not because of any issues with side effects. Compared to others my journey with this interesting drug was a walk in the park. You can read about how I fared in  'Topamax Part II' (which I haven't actually posted so you'll just have to wait!) I've now been off the drug for some months but side effects can continue. If you look at the comments on my first Topamax post you'll read stories from patients who, sadly, continued to suffer adverse side effects for many years. But we're all different and we all respond to these drugs in our own special way. For some, Topamax has been a life saver and there are those who simply couldn't stand being on it for more than a week. It's up to you to discuss the options carefully with your Doctor and do your own research.

I'd still take Topamax again as it did, in combination with other treatments, have a beneficial effect on my migraines which I think (just) outweighed the side effects, and even though my evil plan for fame and riches never came to fruition. So, in the meantime, I'll be keeping a close eye on my eyes.

I'd love to hear from anyone who suffered similar problems with Topamax? 
Coming one day soonish:
Topamax Trials and Tribulations: Part II (I'll put it up one day, I promise!) 

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