Friday, 22 March 2013

MM Book Club update & reminder

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

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



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

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

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

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

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

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

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

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

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

Directions:
1. Click here to enter the chat room: MMBook Club (will open in a new window)
2. Enter Password: mmbookclub
3. Join in our incredible, life changing discussion! (But wait until April as otherwise you'll be talking to yourself. Sad.)

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

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

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

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

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

Thursday, 14 March 2013

MIGRAINEUR OF THE MONTH: MISS MARCH!




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


The lovely Emily - Miss March!

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

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

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

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





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

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

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

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



The Happy Couple! Leeann Marie Photography. Pittsburgh 

If you could be The President for a year what would you do!? 
That is definitely not a job I would want!! I hate talking politics so I will just say what I would do regarding migraines. I would love to provide more funding for migraine research and raise awareness of what migraines actually are (not just a headache) and how they actually affect us. I can’t even imagine the effect that having that kind of a platform might have on raising awareness!
  
I am a lawyer turned blogger and counselor-in-training. I blog about migraines and chronic pain and sometimes my Raynaud’s as well. When I’m not talking about health, I play with my cat, Larry Fitzgerald, plan for my wedding this summer, cook vegetarian food, and cheer on Pittsburgh sports teams.


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

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

Monday, 11 March 2013

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

Last week two articles appeared in the Daily Mail about Migraine. One was about a 38 year old Mother who had found that eating Bananas had "cured her crippling migraines". The other was reporting on a recent German study, leading with the headline: "One in five migraine sufferers had no symptoms after sex".
Eric, Banana Man!! I bet he can help....
So, am I meant to eat the Bananas while I have sex? How many Bananas do the trick? Or do I have sex, then eat a Banana? If I'm having a bad turn, say a 3 day bugger of a migraine, that's a lot of medical sex, so I'll be pretty hungry afterwards, I'll want a lot of Bananas. Do you think Tesco's will do me a deal?

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

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

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

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

Rpatz & Me

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


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


Friday, 1 March 2013

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


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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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