Wednesday, 20 February 2013

The Migraine Monologue Book Club!!

Oprah, it's over.

Richard and Judy, don't even bother. 

Good citizens of the word, a new, exciting Book Club is about to explode into your lives.  Yes, that's right today I can officially announce that THE MIGRAINE MONOLOGUES BOOK CLUB is open for business!!!!!!

A greasy looking Chipster kitten, getting stuck into an article about
Agatha Christie, one of his favourite Authors.
The MM Book Club is a Book Club with a difference. The name may have given it away. We will, mostly, be exploring and enjoying books, articles, essays, films, paintings (who says a Book Club HAS to restrict itself to books?) that are, in some way, related to migraines. 

Doesn't that sound like fun!?

And you, dear readers, will form a (voluntary) Review Panel, who will take it in turns to write a main review article that will be the basis of the on-line, virtual, Book Club discussion. 

I have big plans for this sucker, including non virtual, and virtual talks from Authors, world domination and more!

Reading about migraine, even listening to fictional audio books where a character suffers from a chronic pain condition, has been so enlightening and comforting for me and is, I believe, vital to living with this bugger of a thing called migraine. 

I've set up a new permanent page (just look up the top, see?) for the MM Book Club which will tell you EVERYTHING you need to know including: What? When? Why? How? 

Most importantly, checking out that page will reveal the identity of the first book! But I'm so excitied I'll just tell you now!! 

"Migraine" by Oliver Sacks

I'm sure many of you have already read it, so there's no reason not to join in the first, life changing, MM Book Club meeting which will probably be @16th April 2013

To join the MM Book Club (but by the way anyway can join), to volunteer to join the Review Panel, to learn more about what the heck is going on click here or just email me at! 

Happy Reading People! Let's take over the Book Club world! xx

Monday, 18 February 2013

Meet Miss February Migraineur Of The Month!

Well I'm just bursting with excitement to introduce you to Miss February, my migraine buddy, Fran. In fact, she probably needs no introduction. You may already know her as the author of the mega blog Skullsandponies, you may have already read and even watched her various entries on this very blog, here & here! Seeing as it's February, the supposed month of lurv, I asked Fran some questions about relationships and migraines. And seeing as my longest relationship thus far is with a furry four legged chap called Chipster, I decided the wise lady Fran could probably offer more advice than moi. Enjoy. 

The incredible Fran

Can you remember and describe your first migraine?
It was in my final year of University and I was sat outside my experiment rooms (I was doing a Psychology experiment and busy experimenting on willing students!). I’d been there for hours and my head was just pounding and I felt so sick. It was the worst headache I had ever had and Ibuprofen just wouldn’t touch it. Back then I thought it was just a bad headache but it was definitely the start of my migraines.

Best migraine top tip anyone’s ever given you?
I think discovering triptans and feeling like the GP had been keeping an amazing secret!! But also – aspirin in coke. That’s been a life saver – especially when I had medication overuse headache.

Worst Trigger?
Stress. Even the smallest bit of stress is likely to trigger a migraine – and as a fairly anxious person this doesn’t make life easy.

Favourite migraine comfort?
Chocolate – and being bought chocolate when I’ve had one!

What’s the worst assumption that’s been made about you and your migraines?
That there is a cure and it’s somehow my fault that I haven’t found it yet. People seem to get very cross if they suggest something and you don’t do it – which often means you have to try out a whole bunch of crap that you know won’t work just to prove people wrong! Everyone seems to know someone who had migraine and was magically cured by acupuncture/not eating chocolate/eating magical unicorn hearts – and they get so annoyed when they can’t cure you on the spot! The idea that a condition might not have a direct cause and could be chronic is not a good enough answer to most.

What are you most proud of doing despite living with migraines?
Managing to set up my own business and make it successful (even though migraine was the reason I did this as I couldn’t handle a full time job!)

If you could be the Queen of England for a Year what would you do!?
Well I’d start by getting the Tories out of government…..

What's the most helpful thing that your partner has ever done for you during a migraine? 
This might sound cheesy but just being supportive. He never moans or complains when, yet again, he comes home from work and I’ve got a migraine. He never makes me feel like it’s my fault – he is unrelenting in his support and that makes my life so much easier. He is just consistently supportive and really – you have no idea how much of a difference that makes. Plus this one time I had a migraine I was hungry but really sensitive to light, so had to eat in the dark, and he came and ate his dinner in the dark with me. That’s true love.

Fran with her handsome fella! 

What advice do you have for other migraineurs in relationship?
Be open and honest and talk about everything. Understand that it’s hard for them too when you have to cancel plans last minute or lie in a dark room. They are often the ones that get the brunt of it too, as often you’ll push through wherever else you can but expect them to be ok with you cancelling on them, or being too ill to just hang out. Make time to prioritise them – after all they are the ones that put up with us migraneurs day in day out! It can’t be easy.

My name is Fran. I am a 28 year old freelance digital marketing consultant. I live by the sea with my lovely boyfriend and little ginger and white kitten. When I’m not having migraines you can find me reading, crafting and getting lost in my imagination. 

Thank you so much Fran for agreeing to be Miss February, and for your top relationship tips. I shall be more considerate of Chipster's needs. Kidding. I know many readers will be able to relate to what you've said and be extremely grateful for the nudge to see life from their partners view. I also think it's incredible that you've managed to set up your own thriving company, despite all the obstacles that these buggery migraines throw in your path. I just know it's going to be a huge success. 

If you would like to nominate someone to be Migraineur of the Month
all you have to do is email me!

Coming up:
Unhelpful Helpfulness
Nerve Blocks; all sorts
Child Birth v Migraines! 

Wednesday, 13 February 2013

She Attended With Her Mother – Why I never go to the Doctors alone.

Consulting rooms in X Hospital in 2003
Doctor 1: Mrs Saxton, could you please step out of the room?

Consulting rooms in Y Hospital in 2006
Doctor 2: Mrs Saxton, could you please step out of the room?

Consulting rooms in N Hospital in 2011
Doctor 3: Mrs Saxton, could you please –
Me: No she could not! I am not being forced to attend this appointment, I came of my own free will, I can leave of my own free will, and in case you’re wondering I am not a member of a bizarre religious cult.  I know this may be hard for you to understand but I have perfectly good relationship with my both parents; even my Mum! And not that it’s any of your business - but at this moment I’m not married or in a serious relationship. My friends have jobs and I don’t want to ask them to take time off from their jobs to come to this consultation which, if you do your job properly, will contain a lot of seriously important and useful information that I may not fully digest or hear correctly. We have a lot of ground to cover today and I think 3 brains, are better than 1. Being a neurologist you should agree! So, no, my mother will not be stepping out of the room.

I might not have said exactly all of this  - but Mum really has been asked to leave consultations several times since my migraine journey began when I was a bright eyed, smiley 18 year old. I’m not quite sure why, she’s a sweetie! Some Doctors genuinely could not understand why an 18 year old would want a parent present, and it dawned on me that these Doctors thought migraines were purely ‘psychological’ – induced, perhaps, by having this awful, horrendous mother who took time out of her life to, oh my god, support her daughter.  Usually, when I assured them that I was not being beaten at home, Mum was allowed to re-enter the room. We migraineurs can find it hard enough to be taken seriously, so as a younger woman, just out of her teens, I thought it would be helpful to have a parent there.

I tried going to see Consultants with Dad, he’s an imposing figure. He cuts a handsome figure in his tailor made suits, and is very good at the ‘do you know so and so’ game, as his elder brother was a prestigious Doctor. He’s also had surgery on nearly every bit of his body, so always has some Kevin Bacon 6th degree of contact with most medical person. His years as a Head Hunter always come in use, when debating treatment options he often asks, “Which one would you give your Daughter?” But even as recently as August 2011, Dad and I went to see a new spinal surgeon together and met a stony wall of… ice. Neither of us could crack this guy. By now, after 13 years, I’ve become much more confident and pretty good at ‘pitching’ to new Consultants. But it’s an exhausting process, you’ve got to condense your long complex history, past tried and tested treatments etc, into under an hour. Yes, I have a 2 page medical record CV and, even though I say so myself, I think I’m damn good at telling my story in a useful way. I now know the key questions most Doctors will ask as I’ve seen so many specialists over the years, so fit that in to my spiel. But this guy… he didn’t even want my full pitch. The cheek.

 I returned for the follow-up and test results with Mum, could she crack this man? At least get him to look me in the eye? At this time I was in a bad way, half my face was numb, I couldn’t feel my left hand, plus the migraines were chronic, 3-day wipe-out affairs. I asked him several questions, including why, in his opinion, I was in so much pain. I was referring to the neck/spine issues for which I’d been referred to him. He replied, “I don’t know. You might not even have migraines. Don’t jump the gun.”

I am never lost for words. But I was lost for words and actually had to hold my breath to stop from screaming or crying. Putting aside the fact that this guy wasn’t even a neurologist - he had just trashed my life, essentially. I had just quit my job because my health had deteriorated to such an extent and this man was offering me no help. Mum calmly stood up, thanked him for his time and led me out. I had placed so much hope in this new Consultant; I was destroyed. As we headed downstairs in the lift Mum could see I was on the verge.

She took my hand and said, “Don’t you cry. Don’t you let him win. We still got some valuable information and test results from this and we will simply find another Doctor who can help us.”

“But I can’t feel my face!” And of course I then burst into tears and Mum hugged me. We got a cold letter saying basically, in his opinion, there was nothing much wrong with me, I was fit to work, could even run a marathon. The letter began with “She attended with her Mother.” We found another Doctor.

“Ah, you brought your Father, brilliant! I never think patients should come to new appointments alone, so much information to digest.” I could have kissed this new Doctor! He was rather handsome. And for your mild information further test results showed there were, in fact, a few things wrong with me. For your even milder information, I asked for the Radiologist’s report, direct from the lab, for the various tests done by mean Doctor, and they were incredibly useful and enlightening.

I could give you countless examples of how having my parents at various consultations over the years has been life saving. My Mum notices aspects of my migraines I don’t. For example, I never knew that my left eye starts to droop and shut. She's also a migraineur too, so her input is useful. Dad’s near perfect recall has been invaluable for discussing medication, dosages and treatment plans. They have had the courage to stand up to top Consultants who have belittled me (I still remember with glee the day Dad “dismissed” a famous Consultant who refused to listen), and they've given me the courage not to give up the search of finding that precious thing – a Doctor who is on your team and will work with you to get better. I would have given up years ago if it wasn’t for them – when the first Doctor I ever saw said “Well, I’m not sure there’s much more I can do”. You do not want to know what Mum said to him. Do not mess with Mothers.

It may seem strange to anyone reading this to know that a woman in her 30’s take a parent with her to the Doctors. But when I’m grey and wrinkly I’ll be taking my super rich, 6ft 3 eco-architect husband, and going with him, to important medical appointments. I once made fun of a friend at University (just before my saga began) who was off to see his neurologist for his epilepsy. He was leaving a lecture early to meet his parents who were attending with him.

“Your parents are going with you?” I scornfully asked. He looked at me as if I was insane. “Of course they are! It’s my health, my life. I have big decisions to make.” And he said they wanted and should be involved. I now completely understand what he meant. If I decide to try a new preventative, for example, that can have huge repercussions, and it’s amazing to have someone to debate the pros and cons of this with. Busy Consultants are often in a rush and may want to push decisions or medications on you – having a second person in the room to ask questions, listen and offer support can be vital. Of course Mum can sometimes be over-protective and make annoying, embarrassing Mum comments – but I’m much rather that than face this roller coaster, long road, alone.

Plus, if like me, you tend to get a little hyper and find the whole process exhausting you may simply need a lift home.

Other views:

Friday, 8 February 2013

Star Trek Device to Beam Away Migraines??

Beam Away My Migraine, Scotty!

Ok I'm not a Trekkie so I've probably committed some terrible cardinal sin  - though I did love the film adaption and am very much looking forward to the sequel; especially as it will star Sherlock Holmes!

Anyway, the point is yesterday the papers were filled with a Star Trek looking device (below left) that could, potentially, 'beam' away migraines

See the similarity!
Yes, you may look like a prat but if it works...

It's called CEFALY and apparently uses TENS technology, as in a TENS unit! Remember those TENS units I'm always banging on about and you may see me wearing and mistake for my I-pod ear phones? i.e It sends a tiny electrical stimulation to certain nerves believed to be involved in the migraine process. Yesterday results of a small study in Belgium were released that looked at the efficacy, and safety, of the device which are explained wonderfully by Teri Roberts over at Health Central. In summary, it does sound promising but the study was incredibly small - but side effects seem to be non-existant and the results similar to daily preventatives. I say, let's keep an excited eye on this one.

All kind of clever gadgets and gismos are popping up at the moment. Indeed I even signed up for a trial that puts a gismo up your nose at the first sign of a migraine - but for various reasons I've not been able to take part, partly because you have to get to the hospital where the trial is taking part within 2 hours of the migraine starting. But I'll be really curious to see the results. Just last week I had a go with the Spring TMS device, several of my migraine buddies have found it to be life saving.

Below is a video talking about another implant, stimulation device which sufferers 'turn' on with a hand held, remote control switch. Just to warn you this is a hilarious spoof cheer you all up on a Friday!

Personally, I think it's great that all theses gadgets and devices are being created. Less side effects (hopefully) and it means technology companies investing more money into the migraine market. However, don't try any without first talking to your Doctor! Doh! The way we're thinking about, and treating, migraines does seem to be changing. To infinity and Buzz Light Year would

More information:

Saturday, 2 February 2013

Tweet & Meet Migraineurs - in which I meet my NMC buddies!

"Yes, but what IS Twitter?"

I sigh. I've already spent about half an hour trying to explain to my darling Father what Twitter is. It's actually quite hard. Try to describe, out loud, what Twitter is without showing someone, it's virtually impossible.... 

I never really understood the joys of Twitter myself until I started this blog, then a whole community of fellow migrainuers revealed itself to me. A community that totally 'got' what having migraines meant, that didn't judge or question. Of course there are some complete nut jobs out there who think they really are best friends with Kim Kardashian just because they can Tweet her. On the whole, however, the Twitter community of migraineurs I've 'met' in the past year have been incredibly supportive, helpful and loyal. It's quite bizarre really - the migraine twitter gang - as I like to call it - are almost more understanding than my 'real life' friends who don't have migraines. 

Twitter can lead to 'real life' friendships too. On Wednesday I met, in the flesh, two such migraine twitter buddies - the fabulous Fran (aka Skullsandponies) and Fiona, (aka Dr Fi). Both have featured prominently on this blog: Fran most notably when she was going through a tough time with Medication Over-Use Headache and Fiona, who did an incredible guest post on Hypnotherapy

Fran in the snow!
Dr Fi!

What really ties us three together, however, is the National Migraine Centre. Fiona and Fran worked out that they had appointments on the same day, in fact right after each other, this past Wednesday. And as I needed to book in for a check-up myself - the three of us met for lunch after their appointments. 

May I say, we had our own version of The Migraine United Nations. Fiona and Fran discussed the consultations they had just had and their progress, I debated whether I should start tapering off Topamax and we basically just revelled in being with like-minded, ambitious, 'young', migraineurs and all the issues and complexities that this brings to life. 

Fiona even let Fran and I test out her TMS device. I'd just like to say, you should not try this at home without first consulting your Doctor! We, er, were very careful. 

Me trying the Spring TMS Device

Re the above picture, I'm not wincing in pain, I'm laughing. We did get some pretty strange looks. I swore I felt a hot flush after my first 'shot' with the TMS  but Fran reckoned that was just embarrassment at the table of fellow lunchers laughing at us. Fiona, incidentally, is thrilled with the TMS, (which she got through the NMC) especially as Triptans don't work for her. 

Being that we are, well, migraineurs, we all started to yawn, fade and agreed that socialising is pretty knackering. Personally, I always find lunches the hardest.... never worked out why! I also think seeing your Migraine Specialist and talking about progress/options is always quite draining. But we three were a happy bunch as we parted - and I'm sure the Migraine United Nations will be meeting again to put the world to rights. 

Thank you National Migraine Centre - and Twitter - for making this possible. 

p.s Fiona will be speaking at The Science Museum this coming Wednesday at their Pain-Free Funfair, on her experiences as Pain Sciencist and Migraineur. 

p.p.s - if you are getting troublesome headaches or migraines, please pick up the phone and book yourself an appointment at the NMC - you don't need a GP referral - just think you could be joining us for lunch too! Over lunch we all agreed that it was so lovely to find a place where we felt so supported and found Doctors that really listened and were on our side. Get your butts there! 

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