Friday, 26 July 2013

Am I A Migraineur?

Thoughtful Friday thoughts...

I've been casually throwing about the term 'migraineur' without a second thought. It's just a handy word and, because I'm quite lazy, far quicker than saying "I get migraines", "I suffer with migraines" when talking about... migraines.

When I've been doing the odd bout of public speaking I have noticed that the medical professionals in the crowd, and the charities I was talking about/to, slightly wince when I used the word 'migraineur'. Why?

Some-one with Diabetes calls themselves a Diabetic. Though, that is the only equivalent I can think of off the top of my head. A person suffering with Epilepsy doesn't say 'I'm an Epileptuer', do they? I guess they say 'I'm an Epileptic'? Though (wait, another example just occurred!) people with Autism might be described as Autistic.

The above diseases do, I believe, have similarities to migraine. There is no cure, that I know of, for any and all have massive buckets of stigma attached. So, using the above examples, why is it so wrong to say - this is a person with migraine, a migraineur?

Well, I was really forced to think about my casual sprinkling of the term here and there in our recent Migraine Monologues Book Club chat. We had read 'A Brain Wider Than The Sky' by Andrew Levy - and he refers to himself as a migraineur throughout the book. One of the Book Club members drew our attention to this - and a fascinating discussion about the term began. Some realised that, like me, they'd been using it without really thinking about what the term encapsulates. Saying 'I'm a migraineur' slightly defines you, it irrevocably associates you with the condition. When you're in the throws of Chronic Migraine it does feel like there is no line between where you (as a person) end and the migraine begin. But if you were to introduce yourself at a party, what is the very first thing you'd say to a stranger? Would it really be "Hi, I'm Victoria. I'm a migraineur"? This would be like every alcoholic in the world introducing themselves straight up as "Hi, I'm Bob. I'm an alcoholic." I'm fairly confident this doesn't happen.

For we are more than the conditions that pervade our lives. When you've spent three days solid in bed with a migraine, however, you can't begin to imagine ever having outside interests or time/energy to do the things that you enjoy, that make up you. But there's the key... you do have other interests, hopes, books you love, TV shows you're addicted to, friends etc that have nothing to do with migraine. And those are all quite shallow examples of what makes up a person. So, defining yourself as a migraineur confines you to one aspect of your life.

Since our Book Club chat I've been quite careful to say "I'm someone who suffers with migraines", or "I'm a migraine patient"...or anything else than migraineur. And it hasn't been as hard as I thought and somehow, does make me feel a bit removed from the migraines - as well as more eloquent. I do think, however, that I'll soon slip back into using migraineur as it's just so damn handy - and I know, in myself, that I'm more than this girl who gets lots of migraines.

I decided to look up the phrase and was, actually, pleasantly surprised by what the Merriam Webster online dictionary had to say:



Definition of MIGRAINEUR

: an individual who experiences migraines

Origin of MIGRAINEUR

probably from migraine + -eur (as in entrepreneur)
First Known Use: 1970

I've decided to believe (though this is probably not accurate at all) that the word entrepreneur has really been tacked onto the word migraine. I, therefore, am a migraine entrepreneur - venturing out into pastures unknown, researching this condition, trying to live my life to the fullest despite what the buggery M throws my way. So migraine + entrepreneur = migraineur. If this is so, then I'm happy to call myself a migraineur. Are you? 



What about you. How do you feel about this word and how do you introduce your condition to new people? 


Friday, 19 July 2013

Migraineur Of The Month: My Mum Mrs July!!!


This is a very special edition of Migraineur Of The Month, for Mrs July is my Mummy! Her real name, apart from Mum, is Jill. She has been my biggest supporter, advocate, carer, friend and migraine buddy over the last 14 years. I honestly don't think I'd be alive if it wasn't for her. She constantly refused to give up on me and refused to give up till we found the right help. And she taught me to 'hang on in there' because it would get better. She's given up a huge portion of her time carting me around to various Doctors appointments, all over the world I might add, and all of this while being a migraine sufferer herself. Mum's migraines started later in life - as had her mothers before her. Mum was, I think, treated appallingly by some members of the medical profession - which meant that she wasn't going to take the same crap when directed at me! I count myself very lucky to have a Mum that just completely and utterly understands what I go through. So, here is her migraine story. Over to you Mrs July! 

70th Birthday Jill!

Can you remember & describe your first migraine? 
I was 52/53years old when I got my first migraine.  The main symptom was an incredibly painful right sided headache. I’d once before had what was described to me as a tension headache but this was much worse. Thumping pain that lasted all day. I didn’t know what it was. My GP eventually (after 2 years) sent me to a specialist, after my husband told him just how awful these 'headaches' were. The specialist recommended Immigran tablets. The effect, on me, was terrorizing; I thought my head was exploding – a quite different feeling to the normal thumping. I was on my own and frightened, and only just managed to stop myself calling for an ambulance  No one had bothered to explain what the effect might feel like so I didn’t take them again even though I know they help others, and I clearly had a bad reaction. My GP also decided my headaches must be psychological and gave me some Librium! It was many years later that I realized I was experiencing menopausal migraines and that my Mother had had them too. My Mother’s headaches had not been recognized as migraines either. I eventually got HRT treatment and specific advice and support at the fabulous National Migraine Centre

Best migraine top tip anyone’s ever given you? 
Take medication early – don’t wait to find out if the pain really is a migraine. By then it is too late to stop it developing.

Worst Trigger? 
Muscle spasm. For example sitting with my neck twisted to the right, perhaps to talk to my neighbour at a dinner party. I have an old water-skiing injury that flares up and causes trouble despite having long passed menopause! 

Favourite migraine comfort (apart from a hug from your beautiful daughter)?
Cold milk and plain salted crisps.


What’s the worst assumption that’s been made about you and your migraines?
That they're just psychological . What a nerve for a thumping, suicidal pain that could last 3 days.

I know, because you’re my Mum, that you didn’t have access to Triptans for a long time. What medications/help did Doctors give to you in the meantime?
As mentioned above I once tried Immigran tablets, otherwise I was only ever given Librium. I quickly found that ordinary painkillers like Solpadeine were useless. I suffered with migraines for about 5 years before a new GP gave me some Naramig to try. They transformed my life. I now use under-tongue Zomig, as advised by my daughter! Though prescribed and agreed upon with my GP. 

What are you most proud of doing despite living with migraines?
Helping plan my elder daughter’s wedding and more importantly, seeing her married!

If you could be the Queen of England for a Year what would you do!?
Get together all those pompous, arrogant, sarcastic Doctors/Specialists who had ignorantly decided my migraines were just fuss, and give them all, main line three day thumping head pain with every kind of nausea, vertigo etc ., complete with the bruised body after effects. What sweet revenge!

Mum doing some intense rowing in Central Park, NYC, 2010

In my youth I worked in the Cosmetics business. I was Creative Manager for several major companies. I stopped working when I married for a ‘proper’ job as wife and mother – much more demanding. I love sport but find that golf and windsurfing can trigger migraines. Generally it is a price worth paying as I now have the drop on ‘best practice’ and if I get into trouble the migraines only last a couple of hours. My favourite place to windsurf is in Normandy, where we have a holiday home - Hibou Blanc

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Thank you Mummy! Mum will probably kill me for saying this, but she is currently writing a novel - and when my Sister and I were old enough she took herself off to university and got an MA Degree in English Literature - despite suffering with horrible migraines. Go Mum! 

Wednesday, 17 July 2013

Guest Blog Post: Turning a Personal Journey into a Research Project


The lovely Lauren McGrath has turned her migraine journey into her Master's thesis. Read her incredible story, how her own battle inspired the project and then, most importantly, get involved! Lauren's work, I believe, could have a real impact on how we manage and treat migraines in the future and is an area that is massively under-funded and under-researched. For other migraine sufferers out there, Lauren's story provides bundles of inspiration and demonstrates that migraines don't always win the day

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I was diagnosed with migraines at the age of 10. It didn’t come as a huge surprise, since I’d watched my mother suffer with them for as long as I could remember. My mom explained that there was no cure for her migraines, only preventative measures and medications that occasionally helped.  So, when I was diagnosed, I understood that migraines would become a part of my life and routine. (I am grateful that my mother explained migraines to me in this way, otherwise I would have been unprepared to deal with the constant dilemma of juggling my migraines and the rest of my life!)


The lovely Lauren McGrath

Several years later, after I had finally established a migraine routine and found some medication that worked, I developed a new symptom: I couldn’t walk a straight line. I was showing up late to classes at my university, exhausted, slurring and swaying. I was normally an attentive over-achiever, so the change in the way I carried myself baffled everyone from my professors to my friends and family. After dozens of tests and doctor’s visits (many of whom told me my problems were “in my head”), an MRI showed the cause: there was a large tumor on my brain. I felt vindicated that I wasn’t insane (Well, yeah. My problem was in my head!), irritated that it took so long to figure out, and totally, incredibly frightened about the neurosurgery I was going to need. After further testing, my doctor informed me it was a poorly-placed arachnoid cyst, tangled in my cranial nerves. This was good news, because it wasn’t likely to be malignant. But I still had to admit myself to Johns Hopkins Hospital one summer in 2008, and undergo 9 hours of neurosurgery to have it removed so that I could walk, think, and see normally again without permanent damage.

While most of my symptoms improved or disappeared entirely, the surgery increased the frequency and intensity of my migraines. This meant that I was essentially starting over – I had to re-learn my new triggers, find different medications, and see a different doctor. I embarked on a quest to find the best management plan for my lifestyle and pain level. It was surprisingly difficult! Neurologists had their quick, cookie-cutter fixes, the internet was full of contradictory information, and nothing seemed to be a good fit for me or my busy work schedule. That was when I started looking into applications and websites with guided tools to self-manage migraines. Eventually, I started using an app that worked with my routine and capitalized on my smartphone addiction. I have a copy of this app on every device I own, from my laptop, to my smartphone, to my tablet. It goes where I go, and has made the process of managing my “new” migraines more manageable – so manageable, in fact, that I was able to attend graduate school this year at the London School of Economics.

As a postgraduate student in media and communications, I was supposed to devise an original dissertation project to complete this summer. I was at a total loss – I’ve never written a dissertation, much less at a masters level…so I procrastinated as long as humanly possible. One night, a few days before my topic was due, I felt the stabbing pain of a new migraine. I started entering the specifics on my phone – the pain level, what I took, whether it worked, how long it lasted – and I realized this was one of the ways media intersected with my own life in an important way. I would have felt so helpless in that moment without my migraine app, because there was nothing I could do but take medication and wait. Writing it down and tracking it helped me feel like I was doing something positive, and reminded me (via all of my other entries) that my migraine would end eventually.

Once I decided this would make for an interesting dissertation topic, I started doing research and found that there are a wide variety of new media tools for migraineurs. What do I mean by “new media”? New media is generally thought of as anything that has a networked component that combines multiple forms of media (i.e., it’s “convergent”) and can be accessed portably. This includes websites with diaries and pain maps, applications for tablets and smartphones, as well as blog and forum communities.

While it’s great that so many tools exist, no real research is being done on how they fit into the daily unpredictable lives of actual migraine sufferers. I decided it was important for me to interview some of the people who’ve used or tried using these tools, from the perspective of a media researcher. Many of the first media researchers looked at how media fit into daily life – often referred to as the “habituation” or “domestication” of media. Researchers like Silverstone and Haddon examined how the “new” media of their day – radio and television – became an important part of people’s daily routines. I am applying their domestication framework to understand how new media tools for migraine self-management are incorporated into everyday life.



[A selection of Migraine Apps chosen at random by Victoria] 

Thus far, many of the individuals I’ve interviewed are in the same place I once was. They’re frustrated with their doctors, their pain level, and the impact it has on their ability to take part in other activities. Many are interacting with new media tools in a way that meets daily emotional needs that are not being addressed by their doctors or other “expert” sources. The instant accessibility of a friendly voice on a blog or a forum, or one’s own medical records on a migraine tracker tool allows people to quell the anxiety, depression, and fear that are documented to accompany migraines.

So what’s my conclusion from the research I’ve done, and my personal experience? Well, I’m still in the process of writing my dissertation, so my conclusion is a work in progress. But the one thing I can say with certainty at this point is that it’s important for the migraine community to continue to make their voices heard. Everyone has different needs, and everyone has to self-manage their illness on some level. For some, this means an interest in the continued development blogs and networks like Migraine Monologues. For others, it means an interest in further development of medical tracking websites and apps that can help them feel in control. I would encourage anyone with migraines to speak loudly and often about your needs and how they can be better met with the tools at our disposal in the Internet age. Doctors, public health researchers, and pharmaceutical companies will listen if you voice your opinion, because self-management is becoming especially important in an era of increased population and health care costs. Everyone has a vested interest in improving the lives of migraine sufferers! And last, but not least, participate in my study. I’m collecting interviews online through the 10th of August and your input is valuable!

Above all, the most important lesson I’ve learned from my own experiences and my dissertation research: if you have migraines, you are not alone. Try to remember that through the worst of your pain, and to reach out to the community of migraineurs around you. Whether or not you use new media tools to do this, I promise you won’t regret it. 

Lauren is a sometime-resident of London, who hails from Washington, DC. When she's not thinking about media, communications, or migraines, she enjoys modern dance, yoga, and any and every kind of theatre/performing arts. She's currently completing her masters at the LSE. 

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Lauren - thank you so much for this incredible post and for the work you are doing!  
You are one brave lady!
I urge EVERYONE to fill out the survey, it really doesn't take long and you'll be helping the community! Here is the link again http://lmmcgrath.wordpress.com/participate-in-interviews/
You have until 10th of August to get involved. 

Saturday, 13 July 2013

Book Club Update - Summer Films & Essays

Hello, hello one and all.

Sorry for the delay in this posting.... I have been enjoying the lovely sun we Brits are enjoying for a few days. Actually, being a red head I spontaneously combust in sun and start to feel dizzy after about 5 minutes - but - I'm still determined that one day, one fine day, I shall get a tan.

Anyway.

Last months' Book Club Meeting was a joy. We unanimously agreed that we loved Levy's book 'A Brain Wider Than The Sky', indeed several of the group are going to buy it for non-migraine boyfriend/family members as christmas gifts (lucky them) as we all felt it so beautifully, and vividly describes a life with migraine. As always, the chat brought up a myriad of topics from the guilt we feel, relationships and even the use of the word 'migraineur'. I shall be blogging more on that later. To read my initial review of the book click HERE, and for those of you would couldn't make the chat but want to 'join in' - you can read the highlights of her conversations HERE. I'm still thinking about this book - it really resonated with all of us, even though we all decided that the ending was a bit of a let down. But we each found something to connect to. I, for example, was pleased to see that Levy also got nosebleeds when on Topamax...not that I'd wish nose bleeds on another.

So, NEXT time we are going to be watching a film! It's summer, our brains need a break. The film is
'Love And Other Drugs' which actually revolves around a young Parkinson's patient, and is based on the book "Hard Sell: The Evolution of a Viagra Salesman". I think it will be fascinating to look at another chronic, neurological problem, as well as watch Jake Gyllenhaal get his kit off.



To give our brains a bit of a stretch we'll be looking at Virginia Woolf's essay on 'Being Ill'. It's quite tricky to find copies. I have, however, found this edition which also features the essay: "Notes from a Sick Room" by Julia Stephen, Woolf's mother - who was a volunteer nurse in Victorian England and wrote a guide to caregivers. This edition also features what look to be fascinating essays by biographers and the director of narrative medicine at Columbia University.

Virginia Woolf

I've wanted to read 'On Being Ill' for a long time, not only because Virginia Woolf suffered with migraines, but because the following is, to me, incredibly profound:


“Finally, to hinder the description of illness in literature, there is the poverty of the language.  English, which can express the thoughts of Hamlet and the tragedy of Lear, has no words for the shiver and the headache.  It has all grown one way.  The merest schoolgirl, when she falls in love, has Shakespeare or Keats to speak her mind for her; but let a sufferer try to describe a pain in his head to a doctor and language at once runs dry.  There is nothing ready made for him.  He is forced to coin words himself, and, taking his pain in one hand, and a lump of pure sound in the other (as perhaps the people of Babel did in the beginning), so to crush them together that a brand new word in the end drops out.  Probably it will be something laughable.” 



We shall be 'meeting' on:
Tuesday August 13th at 6pm UK time and 1pm USA time.
I'll post directions on how to join the chat nearer the time, but more information can be found on the main 'Book Club' page.

Happy viewing and reading. And don't forget to wear a hat, drink lots of water and put on sun screen in this heat!

Here is the trailer for 'Love and Other Drugs'





Links:
http://www.amazon.co.uk/On-Being-Ill-Notes-Stephen/dp/1930464134/ref=sr_1_1?ie=UTF8&qid=1373736939&sr=8-1&keywords=virginia+woolf%2C+on+being+ill

http://en.wikipedia.org/wiki/Love_%26_Other_Drugs
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