Sunday, 22 December 2013

How to Survive Christmas in Style

There is no reason for us migraineurs to fear Christmas. Here's why:


  • EAT AS MUCH AS YOU CAN
As we all know, a drop in blood sugar can lead to migraine, or a general feeling of un-wellness. So, at around 10.30am, while the rest of your family and friends are at church/sleeping/drunk you must pull a leg off the Turkey (it will probably have been in the oven since 6am so the leg should be cooked). You can then make yourself a delicious pre-lunch snack, consisting of a Turkey Sandwich. If you forage around the kitchen you will find cranberry sauce, stuffing, gravy - all the essentials of the perfect Sandwich. You should probably just keep eating for the rest of the day. If you are offered any of your food triggers throughout the day, whatever they may be, just hold up the turkey leg and use it as a defensive weapon to ward off unhelpful relatives/bad food.



  • DON'T HAVE A LIE IN - GET UP EARLY AND OPEN PRESENTS
If there are any humans under the age of Ten at your abode there is no chance of you having a lie-in, and thus breaking your 'normal sleep hygiene' patterns. If there aren't any little people, you must still get up early to un-wrap your presents under the christmas tree. You must then re-wrap them, obviously, so you can join in with festivities later. But, this is a good chance to swap any gifts you don't want! While the other adults are sleeping you will then be able to have a turkey sandwich for breakfast and pre-lunch snack - see above. 

  • WEAR SLIPPERS ALL DAY

You have permission to wear sparkly Ugg Boots all day long. If you insist on wearing actual shoes, platform wedges are cool at the moment, so you can still look fashionable and not break your back. Do not break your back/neck/shoulder with pointy stilettos. Ugg Boots are your friend on this day. Simply say they were a Christmas present from the host and no-one will dare question your questionable fashion taste. 


  • CARRY A BUNCH OF MISTLETOE AT ALL TIME

To get yourself out of any 'danger' situations - i.e sitting next to your Aunt who wears that hideous perfume that seems to block up your nostrils after one whiff - hold up your mistletoe. Hold it up high above her head, beam lovingly at your Aunt and say 'Pucker up Auntie, I have the mistletoe'! She will then proceed to make a polite excuse to move away. Obviously, there is a very slight possibility of this trick going awry - but give it a try. 

  • WEAR A BUM-BAG WITH SUPPLIES
Hopefully, you will have already purchased yourself an early Christmas present of a designer Stella McCartney  bum bag (Americans, this is a fanny pack - they really don't sound good in either language do they?). You must then fill your designer bum bag with everything you need to survive the day: a mini bottle of water, brandy, pain killers, triptans, eye masks, ear plugs, rescue remedies, hot water bottle - any and everything that will help you. Have no shame in lying down on the sofa at 1pm and donning your lavender eye mask and putting in your ear plugs to drown out the screams of over excited children. Simply place the mistletoe and the bottle of brandy on top of the all in one snuggie that you will be wearing, and your family will simply conclude you have drunkenly passed out and you will be left in peace. Simples. 

The combination of wearing sparkly uggs, a snuggie with a bum bag over the top will probably start some new fashion craze - so not only will you have survived Christmas but you will be in all the magazines. Could you ask for more? 


I do hope these essential survival tips help you get through the festive season with joy and peace. I've had my share of Christmas disasters in the past but this year I am determined to make it through in style and comfort. See you all in 2014!

Link to other helpful ideas:


Friday, 13 December 2013

Musical Depiction of Migraine: Richard Wagner

Watch this video…






The above video (which I hoped you've now watched) was put together by Doctors at a German Headache Centre. They've discovered (as you'll know because you watched the video - p.s did you slightly laugh at the end as it's so clearly 'choreographed!) that Wagner did, indeed, suffer from severe migraine and aura. Interestingly, they believe that he depicted, if you will, his feelings of migraine in his works - specifically the opera Siegfried. Wagner enthusiasts will no doubt be intrigued to learn that he constantly wore a hat because, during his life time, that was one of the main treatments for headache. If only poor Wagner had been aware of the MigraCap.

Read the fascinating full article in the BMJ which also looks at Wagners' letters and autobiography. Once again, I find it hugely encouraging that despite living with this "compulsive plague!" Wagner was able to achieve great success and produce astonishing works of art.

Wagner geeks - what do you think? Can you 'hear' and 'feel' migraine in some of his works?

Wednesday, 11 December 2013

Book Club Update: The Bone Season by Samantha Shannon

I am pleased as punch to officially announce that the next Migraine Monologues Book Club book will be, as careful readers will have no doubt guessed, The Bone Season by Samantha Shannon.

Taken from www.boneseasonbooks.com

Yesterday, I was lucky enough to sit down with the Author herself and hear how her migraines inspired central elements of the book. It was so refreshing and exhilarating to meet such a talented figure who has proudly embraced living with migraine and used the condition in such a creative, exciting and successful way. We should all take a leaf out of Samantha's book (and, um, also read the incredible one she's actually written)! I'll be posting the interview shortly.

Breaking News!


Copyright Mark Pringle

Samantha has, very kindly, agreed to take part in the next book club chat!!!  This will either be in person in a venue in Central London or, 'out of body', via Google hangout. I'm just ironing out dates/details but will let you know as soon as I can. So, in the meantime get reading or listening (the book is available via Audible).

Below is more information/links about this New York Times hit list, dazzling book that whisks you away to Scion London 2059.



Keep your eyes peeled for updates and the interview with Samantha. 

Friday, 6 December 2013

Questions for The Bone Season's Author, Samantha Shannon

Happy Festive Season one and all.

This coming Tuesday I shall be meeting with the delightful and uber uber talented Samantha Shannon.

Taken from www.boneseasonsbooks.com


Samantha, aged 21, has written the most brilliant dystopian novel The Bone Season and if you pay attention, you'll notice that migraine aura, and headaches, are beautifully and ingeniously interwoven into the story. Samantha herself is a migraine sufferer and has very generously agreed to be interviewed for this blog.

We'll be reading The Bone Season for the next Migraine Monologues Book Club in January, so if you haven't read (or listened via audible) to it yet - get going, you're in for a treat! You do not want to miss out.

'Call it this summer’s The Hunger Games’ Glamour
‘Gripped me to the marrow’ The Telegraph
‘There is no doubt that Samantha Shannon is the real thing’ The Observer

But for now - I'd love to know what questions you'd like me to ask Samantha - about the book, her migraines, how they impacted her creative process, what's she's hoping Father Christmas will bring her….

I, for one, am incredibly excited about meeting this emerging talent and find it hugely inspiring that despite living with migraines, Samantha has managed to achieve crazy huge levels of success. She doesn't know it yet, but she is definitely going to be Miss December, Migraineur of The Month…perhaps she should be Miss 2013?

So - questions please! 



Saturday, 16 November 2013

Water Challenge Week 3: How much exactly?

I have now discovered why I can never stick to a new diet for more than 3 hours.

I just plain forget about the diet. And, I just plain don't really care.

But I do, really really, want to stick to my water challenge! I installed the app that pings at me every hour with a helpful reminder that I need to drink more - but I simply press 'dismiss'. And then I forget that I should be drinking more. Then I remember and think 'meh'.

This is, clearly, not very productive. I am determined to do the challenge PROPERLY for the final week.

I also now have some better guidance from The National Migraine Centre and The Migraine Trust.



The Medical Director of the National Migraine Centre advised ME to try for 2 Litres on average. This is going to be interesting as I'm barely managing 1ltr. You should, as always, check with your own Doctor before deciding on an amount.

The Migraine Trust pointed me towards some very helpful, fact based, information. They sent me a link to the NHS Choices website  which recommends 1.6ltrs for a female, and they also highlighted the following:

Dr Anne MacGregor’s book ‘Understanding migraine and other headaches’ (Family Doctor Books, 2006) includes the following:

‘Dehydration is a common cause of headache and is also implicated in migraine.  A recent study of increasing daily fluid intake by at least one litre per day showed that increased water intake reduced the total number of hours and intensity of headache episodes’. 

There is, however, no information as to the total amount of water the participants in the above study drank each day overall. Also, go and read Dr MacGregors book RIGHT NOW if you haven't, it's a great 'intro' to migraines. 

So, it appears that I will generally benefit overall if I just drink more bloody water. I am going to do it I tell you, I will! 

Wish me luck. 

p.s If you have any migraine related questions do call the Information and Enquiry Service that the Migraine Trust provide FOR FREE!! Then go and book yourself an appointment at the National Migraine Centre to see a migraine specialist. 


Friday, 8 November 2013

Water Challenge Week Two! In which I forget there is a challenge

Confession: I completely forgot I was doing a Water Challenge for most of this past week.

I suddenly remembered at about 10pm on Sunday but decided that trying to drink 1.6 litres of water, so close to bed time, might lead to a nasty accident. 

Other days I have been very good. On my desk now proudly sit my nalgene and bobble bottle. Combined, they make up exactly the ammount of water I'd like to drink every day. What I have learnt this week is that I have very sporadic drinking patterns. Some days I'll meet my quota without even noticing and others, like Sunday, I'll realise all I've had to drink that day has been two cups of tea. And possibly some Gin. 

You, dear readers, have been much better at the challenge than I. One of my friends posted on twitter that in just one week she's noticed a massive difference; she has more energy, feels less foggy and is sleeping better! Isn't that fantastic?! 



She is using a brilliant app called 'Hydro' - which helps you work out how much water YOU should be drinking. The National Migraine Centre and The Migraine Trust are both going to get back to me re amounts next week - but I'm realising it's a little like asking 'how long is a piece of string?'. As with all things migraines, it's very individual. 

So this next week I shall be using the app (which includes cups of tea etc) to help nudge me on in my quest to become a regular drinker of water! 

I'd love to hear how others are getting on - and thanks for all the support! x

Tuesday, 5 November 2013

I'm fine thanks, how are you? When you DON'T want to talk about migraines

This is what occurs when I go to the GP:

Computer Tannoy bleeps: V.SAXTON to room 3. Room 3.

V. Saxton gently knocks on the door of room 3 - because this is polite. Even though V.Saxton has, effectively, been invited in she still wants to check the GP is ready for her. 

GP: Come in?

V.Saxton: (beaming smile, outstretching hand ready for vigorous hand shake!) Hello, hello! How are you today? I'm fine! 

GP: Er...

*******
Unfortunately, I always seem to go into 'interview - get a job' mode when I see any Doctor. I don't know why. I beam, sit up straight, talk clearly and feel like I must give the best impression. It was only about a year ago I realised this really had to stop. I looked over some old notes from a pain specialist who wrote that I seemed happy and to show no anger at my condition. Well, that wouldn't be British would it? My stiff upper lip manner meant, however, this particular pain specialist didn't take my pain seriously. 

I fear I was brought up too well. 

The whole point of this blog has been to try to break the taboo of talking about migraine. I want to encourage conversation, to dispel the myths and misconceptions that surround migraine. Because of this blog I frequently get asked about my migraines and migraines in general. This is brilliant. This is the point of the blog. I will happily chat to anyone about migraines for hours on end. 

However. However. 

Sometimes I just don't want to talk about it, and not just when I'm at the GP's. I feel migrained-out. Sometimes I just want to say "I'm fine, thanks. How are you? Did you see 'Home&Away' yesterday?" I know this completely contradicts most of the posts I've written here. I've written about the burden of living with an invisible illness that no one but your Mum knows about. But sometimes I simply want to talk about Miley Cyrus Twerking and if the new Sandra Bullock space film is any good. I don't want to have a deep and meaningful conversation about health, mine or anyone else's. 

This past weekend Mum had a drinks party. Her friends have been incredibly supportive. They frequently ring to check on us, send articles and genuinely seem invested in how I'm progressing. But I didn't have the energy to answer all of their (well meaning) queries. "How are you, really? You can tell me." I feel awful because they do care and have been so kind. And it is so lovely when people do actually ask. I've often been incredibly hurt when I've seen friends and they don't seem to care. But I was feeling well (i.e no headache in sight) at the party and didn't want to think, or dwell, on migraines. I wanted to be normal, I guess. My Dad has the same problem. He'll just have recovered from a bout of Pneumonia, when a friend will call to ask how he's doing and he'll reply "I'm fine, thanks. How are you?" End of story. Move on. 

I can hear myself sounding like a whinging brat. I want to pick and chose when I talk about migraines. I can't expect to write this blog and not be asked about migraines. It's a kind of selfish catch 22, maybe?   I'm not even sure what I'm trying to articulate (as you can probably tell from this jumble of a post). 

My answer at the party was: "I'm on an upward trajectory, thank you so much for asking". 

Is this rude? I hope it's not. I want to acknowledge that I'm grateful you asked but today, for whatever reason, I don't want to talk about it. Migraine can be such a conversation killer that, occasionally, it's easier not to open that can of worms. Even though I do think we should all talk more about migraines so friends, family and co-workers understand what we go through. I clearly should not be so polite/restrained/weird when I'm at the Doctors. We should all talk about migraine all the time - except when I don't want to. 






Friday, 1 November 2013

The Water Challenge

8 glasses a day.

This is my future husband.
I'll meet him when I've done the water challenge. Obviously.

Perceived wisdom (i.e. pretty sure I heard this on ITV's Daybreak once) suggests women should drink 8 glasses of water per day. But what size of glass? Surely 8 tiny glasses of water is massively different to 8 giant pint sized glasses? WHAT KIND OF GLASS! This wishy washy 'guideline' has always annoyed me. Be specific people.

Dehydration is a well known migraine trigger. Dehydration even  contributes to headaches of - what I shall call - normal people (i.e. non migraineurs). I often get thirsty when a migraine is on the way. At the moment I also happen to be waking up thirsty. But this is just because a Doctor once told me not to drink anything an hour before going to bed so I wouldn't wake up in the middle of the night needing to pee. It's so annoying when you wake up needing to pee. It interrupts precious sleep hygiene patterns! I think I may be slightly dehydrated.

Yesterday this article in the Daily Mail caught my eye. A woman drank 3 LITRES of water a day for a month - her headaches (and skin) dramatically improved. Apparently she looked 10 years younger. But don't all rush out and drink from the nearest overflowing faucet. Drinking too much water can also be bad for you. Which is why I need to know exactly how much 8 glasses of water a day really is.

Step in NHS Live Well Website.

The European Food Safety Authority recommends that women should drink about 1.6 litres of fluid and men should drink about 2.0 litres of fluid per day. That's about eight 200ml glasses for a woman and 10 200ml glasses for a man.


Thank you NHS. Annoyingly the Mayo Clinic Website says women should drink 2.2 litres a day. Hmm. It seems to be a variable. The woman in the Daily Mail article was checked out by a Neurologists and her GP before she started her mighty water challenge. She was drinking double the 'recommended dose' - but the benefits are clearly visible.

So I've decided to do my own water challenge. I know I don't drink enough water - and I'm not going to count cups of tea, fruit juices, or my other favourite clear liquid - Gin.

I am going to measure out 1.6 litres each morning and make sure I drink every last drop every day for the month of November. No moustache growing or writing a novel in a month for me. I shall be doing NaWatmo...? It's not very catchy. But I won't be alone, the fabulous Fran is going to join me.

I will be utilising my new bobble water bottle (pictured below) and the plethora of Nalgenes I have collected from various American universities over the years. My plan is to scatter them about the place so water is always on hand.



To make this scientific - here is a delightful picture of me this morning. I will take a picture every Friday this month to see what we can see. And below right is Fabulous Fran. She already looks pretty good to me - but she has no idea how much water she drinks and wants to find out if it will effect her migraines. Will we be transformed in 4 weeks?


Wow - Halloween! 
The lovely Fran. She's already had 1ltr H20


I've written to The Migraine Trust and the National Migraine Centre to get some more information on dehydration and recommended water intake, which I will share with you. Please don't join us on this challenge without making sure it is healthy for you. Check with your GP that increased water intake wont clash with any medications you're currently taking.

So - here we go. Bottoms up! Fran and I will be keeping you regularly updated on our hydrating journey.

Useful Links:
http://migraine.com/blog/migraine-triggers-dehydration/
http://headaches.about.com/od/headaches101/a/Dealing-With-A-Dehydration-Headache.htm
http://www.migraineclinic.org.uk/wp-content/uploads/2012/03/Factsheet-Food-and-Migraine-12.1.122.pdf
http://www.dailymail.co.uk/femail/article-2480491/How-drinking-litres-water-day-took-years-face.html

Thursday, 24 October 2013

What do you DO all day? Questions for a Chronic Migraineur

"What do you do all day?"

"I wish I had all that time to myself."

"It must be lovely not getting up to an alarm clock!"

"Yes, but what do you actually do during the days?"


In the throes of Chronic Migraine and buggered up neck land, I couldn't work full time. I couldn't really work part time. This seemed to confound my friends and other innocent bystanders. They simply could not understand what I did with my long, long days of slumber. Many suggested hobbies from yoga to baking.

I, always politely, replied that if I was well enough - if I could -  I would love to laze around all day learning yoga and getting my baking up to Mary Berry standards. Alas, I would gently repeat, I have a chronic pain condition that prevents me from even doing yoga. "Yes but...." would always come the helpful response.

So, let me lay out a typical day for someone in the throws of Chronic/Daily Migraine or even any continuos pain condition. First, to be totally honest, it's all a bit of a blur. Secondly, people always forget (I'm including myself in this) how utterly exhausting pain is. Remember this and read on....

Day 1:

4/5am - Woken by deep stabbing in skull. It's like needing to pee in the night. You know you have to get up and do something - but you were enjoying sleeping. Get out of bed, start 'migraine protocol' of either injections, nasal sprays, possibly pain killers. While you're up (if you can actually stand) might as well get hot water bottle and ice pack. Re-position pillows that seem designed to provide no comfort or support at all. Turn on audiobook to distract you from pain.

7am - Alarm goes off. Every Doctor/Physio/Parent tells you that regular sleep patterns are key to managing such conditions. However, you've only just, about 10 minutes ago, managed to drift back to sleep. You attempt to sit up, wanting to maintain good sleep hygiene, you panic that disrupted sleep is a trigger for you. How will you get to sleep tonight if you sleep-in now! But even the act of sitting up makes you feel shaky and it's possible you might vom on the cat that is asleep on your feet. Return to horizontal.



9am - If the medication has had desired effect you will be able to drag yourself to the kitchen. You must eat to maintain stable blood sugar levels after all. You feel like a truck ran you over in the night. The effort of getting to the kitchen and eating is exhausting. Return to bed.

11am - Nope. Bugger. The medication hasn't really worked, it was just a brief respite, the stabbing pain and general body ache is back. You know this is going to be a 2-3 day affair. You will swim in and out of consciousness throughout the days. The main aim now, ironically, is to sleep. If you're lucky a parent/friend will bring food parcels at regular intervals. When you can focus enough to eat, you spend about 15 minutes contemplating the teeny tiny size and texture of rice grains. Isn't it a miracle? Such fascinating thoughts take up much brain space during this period.



2 - 3 days later:

Slowly emerge into the world. Today you feel capable of showering and wearing non sleep attire. But you are now in the full throes of migraine hangover, i.e feel battered and bruised, probably tearful and just want to go back to bed and recover. But you've been in bed for the best part of 3 days so you want to check that the world is still there. Plus, you have Physio, Consultant and GP appointments that you can no longer delay.

You bravely arrange to meet a friend for coffee. Coffee? Brave? Keep reading. The effort involved in physically getting to the meeting location will be almighty. But you will appear, to all intense and purposes, to look just dandy; a bit crumpled around the edges but no one would guess you hadn't spent the week baking and learning yoga.  You will have had a power nap in preparation, put on nice clothes and even brushed your hair. But this outing will probably re-trigger another attack so it's likely days 1-3 will be repeated (see above). But you decide it's wroth it as you desperately want human contact with someone outside the medical community.

You enter Starbucks (nearest coffee/tea place - don't judge). You order a soy chai tea latte and marvel at all the other (seemingly) healthy people milling about. You feel as if you're in the middle a 3D film, the world seems to have an odd sheen to it. You do not feel part of it.

You sit down to meet your friend, so pleased with yourself for making it this far.

"So, what have you been up to this week?" they cheerfully ask.





Sunday, 20 October 2013

JFK, Sex and Migraines

Happy Sunday all. 

After a little break - while I went on vacation -  normal blogging services shall be resuming. 

Here is a tidbit to amuse you today:

According to a new biography of the fabulous Jackie O, as reported by the Daily Mail, her errant husband - JFK - allegedly said:

"'I get a migraine headache if I don't get a strange piece of a** daily"


Charming. But I'm pretty sure I wouldn't have said no as he was rather dashing. 



Now this is not the first time The Daily Mail has offered sex as a migraine remedy. I also have a vague recollection of some Italian scientist delving into this matter....

Seriously though, does anyone know if JFK did actually get migraines? On recent said vacation I visited the Sixth Floor Museum in Dallas, Texas, former site of the Texas School Book Depository. It was a very thoroughly researched collection and I don't recall any mention of migraines..... 

Monday, 7 October 2013

Book Review: Migraine and Other Headaches by Dr Fontebasso. Guest Post.

The fabulous Daisy, of Migraine Memoirs, was the obvious choice to review this handy guide to migraines. Why? Because Daisy happens to be a patient of Dr Fontebasso who heads up (excuse the pun) the York Headache Clinic. Who better to compare the book (the theory) to the actual treatment (practise) and care given. Daisy's review makes for interesting (and very honest) reading - and, I must confess - I completely agree with her analysis. But you'll have to read on below to find out what that is!



To discuss the book, and general migraine issues, with the rest of the Book Club Members join us tomorrow (Tuesday 8th) for a private, on-line, group discussion. Directions at the bottom of this post.
-------

I was excited when Victoria asked me to do the review for the book club this time, mostly because the book is written by my specialist at York Hospital and I could draw comparisons on my experience at the Headache Clinic at York Hospital’s Department of Neurology with the book.

Firstly, a note about the way the Headache Clinic works at York Hospital for migraine sufferers like myself.  On my first visit I had a 30 minute appointment with Dr Fontebasso, the book's author, who then provided my diagnosis of Migraine Without Aura.  After that, I return every 6 months but each visit after the first one is with the specialist nurse, Jill Murphy, who I noticed was mentioned in the acknowledgements in the book, so I have had minimal contact with Dr Fontebasso despite the fact she is my specialist doctor.

The fabulous Daisy on her wedding day!

The book itself is broken down into various chapters which range from defining migraine and other headaches, diet & lifestyle and other complementary therapies, through to both preventative and acute treatments.  I think the chapter subjects themselves were well thought out, covering a wide area of topics. The format of almost all of those chapters however, is a brief introduction to the topic by Dr Fontebasso followed by the rest of the chapter being questions and answers. Judging by the specific situational nature of many of the questions, I believe the questions are largely asked by real people.  

Unfortunately, the result of this format structure is that the questions and answers are extremely repetitive and you have to read through lots of almost identical answers to find the occasional new piece of information or advice.  This was a really tedious way to find out the information Dr Fontebasso was trying to convey to us, and left me feeling really frustrated.  Even more frustrating I found, was that there were even some questions which we repeated verbatim in other chapters.

Leaving the frustrating formatting of the book aside, I was naturally comparing my experiences at the Headache Clinic at York Hospital as I read it.  The introduction I thought was very good, recognising that every person is different and that you need to understand a person's full story to understand their headaches or migraines the best.  This was reflected by the full and thorough history Dr Fontebasso took from me on my first visit at the hospital and I hope this was all passed along to the specialist nurse who I have been seeing ever since, as this was never something she asked for.  In the introduction Dr Fontebasso describes the format of the book as being designed to best empower the reader to find out and understand their own problems as best they could, but I think the same information would have been much better disseminated in a different format.

I found it interesting (on page 14) in the chapter about what migraine is, that Dr Fontebasso doesn't recommend detailed diaries are kept, as this focusses too much on the negative.  I strongly disagree with this as I think a detailed diary helps each person to understand what their triggers are so that they can better manage them in the future.  From my experience at York Hospital, the specialist nurse has asked me to keep diaries for just this reason so I found this contradictory from my experience at Dr Fontebasso's clinic as well.

In chapter five, which was about headaches with more serious consequences, I really felt the information here would have been far better laid out. For example, having the possible symptoms of these more serious conditions, and information about them, which would make it an easy reference chapter compared to (again) very piecemeal way of having to look through all of the questions and answers.

Chapter seven which was focussed on successfully managing your condition and how to best help yourself was, I think, one of the most useful chapters in the book.  The descriptions of thresholds and managing thresholds is exactly what I have had described to me at York hospital and I found that way of thinking a revolution with regards to managing my lifestyle - and I'm really pleased it has been described in the book.  Considering that I have been given several self-printed leaflets at the clinic, I'm surprised that I was never given a leaflet showing the threshold diagrams on pages 84 & 86.  The information about the glycaemic index on pages 95 and 96 was very useful and I was surprised that I have never been told about this at York hospital.

The information about complementary therapies in chapter eight was certainly backed up by the actions taken at York hospital as they referred me to NHS provided specialist headache acupuncture and a headache specialist clinical psychologist.

In chapter nine which is about who you can go to for help with headaches and migraines, the introduction mentioned a specialist nurse, which is of course how the York hospital clinic works.  I find this way of working very frustrating though as I would also like the opportunity to see Dr Fontebasso again as well, as good as Jill Murphy is I don't expect her to have the same level of understanding of things that Dr Fontebasso has.

Chapters eleven and twelve deal with acute and preventative treatments and when discussing various drugs, I very strongly feel that this information would be better presented if it was laid out in a clear and structured way - instead of the usual question and answer format.  The table of drug interactions on pages 180 and 181 was very helpful but I'm surprised again, that I haven't been given this information by York hospital.

In chapter twelve, Dr Fontebasso explains how preventatives should only be taken for three to twelve months to break a cycle, but I have been on propranalol for three years now so I'm surprised that I haven't been advised to come off it by now if this is her recommendation.

I was pleased to see that a whole chapter was dedicated to medication overuse headache (MOH) as I think this is very common among chronic migraine sufferers and it's something which GPs don't seem to have much understanding of.  I had MOH when I had my first visit to the clinic at York hospital and since then I have been limited by them to only six medication days per rolling month.  This has been very difficult to stick to but I have stuck to it having experienced MOH I don't want to go through that again.

I found chapter fifteen about women and hormones particularly interesting because I know people are usually surprised when I say that I have been put on the pill to help with my migraines.  Whilst I was out of work last year, my migraines formed a definite pattern of only happening at menstruation and ovulation so I was put on a low oestrogen pill which I tricycle, which means I take three packets back-to-back before having the one week break.  I was told this was to level out my oestrogen levels so that I wouldn't have the peaks and troughs of oestrogen which seemed to be the main cause for my migraines at that time.  If I had migraine with aura then I never would have had this recommended to me due to the increased risk of stroke but since I don't have aura then I've been perfectly happy with this as a preventative treatment.   I was very surprised therefore, to not read about this anywhere in this chapter and I wonder if this is a treatment they have started to recommend since the book was written about seven years ago.The charts which were shown in this chapter are very similar to the charts I was given by York hospital to fill in but those also included what times headaches started and stopped etc, as well which was useful for conveying when a triptan had seemed to work but then it returned the next day.

The section I anticipated finding the most useful was within chapter fifteen and was about pregnancy.  As someone who is wanting to get pregnant but can't start trying because of her migraines this was of particular interest.  Most of the information here was about getting migraines whilst pregnant, to which the same answer was given time and again of only use paracetamol, something which I know doesn't come close to touching my migraines so that does fill me with dread.  Eventually the issue I wanted addressing came up, about trying to get pregnant when you are on preventatives.  The answer was what I feared it would be though, that you need to come off the preventatives before trying.  I hadn't had such a definitive answer as this from the York hospital specialist nurse though so I wonder if it is less clear-cut than this but Dr Fontebasso didn't want to put that in writing.

The book finished with a chapter about research which has become out of date quite quickly of course, so I'm surprised it was included.  Seeing botox becoming a more widespread treatment on the NHS now though, I found it interesting to read the quite sceptical was Dr Fontebasso was talking about in 2006.  The glossary at the end was very useful to anyone newly diagnosed who isn't used to reading the language used for migraines but the contact details section was again, out of date already with mentions of sending stamped addressed enveloped to some places.

Overall, I think the book had quite a but of useful information in it but it was so difficult to find that information and even harder to then go back and reference it again, that I think the book ended up losing most of its value because of this.  I won't be recommending this to any other sufferers I know and I didn't even find that it was wholly consistent with my experience as a patient of Dr Fontebasso.


Daisy is a 33 year-old sufferer of migraine without aura.  She's had migraines for 4 years and they have been chronic for most of that time.  She works full time at the University of York supporting the Timetabling system by managing the migraines with medication and lifestyle.  She's a proud geek and crafter who spends most of the time she's able to either playing board games or making crafty things.  She blogs about her migraines to help her friends and family understand her better atwww.migrainememoirs.blogspot.co.uk

Thank you Daisy for such an honest and thoughtful review!

We will be meeting on Tuesday 8th October at 6pm (UK) and 1pm (USA). Everyone and anyone is welcome to join in. Just follow the instructions below:

DIRECTIONS TO PARTICIPATE:
1Click 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! 

Thursday, 5 September 2013

RENT: How many days have you lost to migraine?


Migraine is the great time thief. It shamelessly barges into our lives and steals time that we can never have back. One of the hardest parts of living with migraine are all the milestone events you have to miss: birthday parties, christenings, job interviews, weddings….and on it goes. Time is stolen that you can never have back.

I asked several migraine buddies if they would kindly tally up an estimate of days they lost to migraine. Counting up my own days for 2011 -12 I must admit I felt like someone had punched me in the gut. It’s quite shocking, seeing it there in black and white, seeing what the great time thief has taken.

2011:

Sarah (aged 46)
Basilar Migraine and Chronic Migraine
Lost: 365 days
 Of those 365 migraines, 156 of were Basilar attacks.

Victoria (aged 32)
Chronic and Episodic Migraine
Lost: 120 days

2012:
Daisy (aged 33)
Chronic Migraine
Lost: 75 days
Plus 6 months off work.
(2013 – 60 days lost and counting…)

2013:
Fiona (aged 32)
Chronic and Episodic Migraine
Lost: 99 days so far this year…
2012: 125 days and 2011: 178 days

Claire (29)
Chronic Migraines
Lost: 70 days so far this year…

It is, really, quite hard to estimate the actual number of days lost to migraine. In my tally I simply added up the days I took a triptan. In 2011 most of my migraines lasted 3 days, and I also didn’t count the hangover days that followed nearly every attack. So my tally from 2011 is probably double the 120 stated. 2011 is also the year I had to give up work due to migraines. Sarah, Fiona, Claire and Daisy are also essentially noting the days of migraine attacks they had. As Daisy notes in Migraine Memoirs, these numbers also don’t take into account all the times you stay in, tread carefully, rest and miss out on yet more of life as you don’t want to re-trigger that migraine.

This post was inspired by the fabulous song “Seasons of Love” from the musical RENT. The lyric for the song begins as follows:

Five hundred twenty-five thousand
Six hundred minutes,
Five hundred twenty-five thousand
Moments so dear.
Five hundred twenty-five thousand
Six hundred minutes
How do you measure, measure a year?

In daylights, in sunsets, in midnights
In cups of coffee
In inches, in miles, in laughter, in strife.

In five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life?.....

How many of those Five hundred twenty-five thousand, six hundred minutes have been spent having a migraine? But, more importantly, we should be proud of all that we accomplish despite the time migraine steals from us.


You can learn more about RENT here. I highly recommend that you listen to Original Broadway Cast Recording, the above is from the film version. 

Side note: Myself and the other migraineurs were all able to make this estimate as we keep careful diaries. We all use different ones, but I highly recommend you use a migraine diary, they’re an invaluable tool for your Doctor and for you. I’ll write a summary of the different migraine diaries available, soon.


How many days have migraine stolen from you this year?

#morethanjustaheadache
#maw2013

Tomorrow:
Evita: “Don’t Cry for me Argentina”. Do you want empathy and understanding? Do you want sympathy? Do you ever NOT want to talk about your migraines. Why? When?

Wednesday, 4 September 2013

"Money, Money, Money" - How much have you spent on your migraine treatment?

Mamma Mia: “Money Money Money”: How does living with Migraine or another Headache Disorder impact your financial situation? How much have you spent on migraines in recent years?



Oh if only mastercard could sponsor my migraines, or rather sort out my migraine financial mess. In the UK we are very lucky to have the NHS but oh my, even with treatment on the NHS (and don't forget you have to pay about £8 for each prescription so that quickly adds up) most migraine patients will spend Thousands, and I mean Thousands of pounds, on their migraines. 

What we will spend money on I hear your cry? Well, before you get yourself a proper migraine specialist and treatment plan in place you will be buying bucket loads of over the counter pain killers, EVERY possible migraine related gadget or gismo that BOOTS has to offer - heat strips, cool strips, pepermint rubs, hot water bottles, neck pillows, vitamins and supplements that might help. You will pay almost anything to the person who says to you "I can help!". These (well meaning) people include: Physios, Chiropractors, Osteopaths, Dieticians, Reflexologists, Hypnotherapists, Acupuncturists and every other kind of 'ist' you can think of! Some will find comfort and pain relief with these treatments; my physio is the single biggest help to me but I went through nearly every other physio, spine specialists, inner ear specialists, massage therapists in London before I found her. And I had to pay (or to be honest, as I was young) my parents probably had to pay their hefty bills. And to be honest, I haven't even got the guts to add up how much my migraine condition has cost me and my family over the last 14 years. Migraine has meant I haven't been able to hold down a job for quite a while, so had to move in with my parents. I wonder how much I've cost them in food and board, in addition to medical bills? How much money have I lost because, unlike my University friends, I haven't been able to start amassing savings and hold down a steady 9-5 type job? 

But, luckily, I have some brave pals who estimated how much this condition has cost. 

Amanda: 40, chronic migraines, diagnosed at 21. 

I have spent over £20,000 on migraines, but as I have been on a mission over the last three years to solve it, I have spent over £10,000 in just three years and alarmingly I'm no better. If I wasn't a migraineur I would have enjoyed lots of fabulous holidays or have some pretty decent savings by now.

My calculations are as follows, it's very depressing to read how much I've wasted and nothing has made even the slightest bit of difference:

Jan 2011 - Dec 2011
Botox (private clinic, three sessions £360)
Magnesium citrate - one tablet per day £40
Triptans bought over the counter (GP wouldn't prescribe Imigran and the generics didn't work) £675
Cranial sacral - two sessions per week, £17.50 per session £1,820
Physio - one session per month £35 per session £420
Total for 2011 - £3,315

Jan 2012 - Dec 2012
Electro acupuncture £45 per session, twice weekly from January to April £1,440
Nutritionist £600 - over four months
Hypnotherapy - £35 per week - £1,820
Cranial sacral - two sessions per week, £17.50 per session £1,820
Triptans bought over the counter when Imigran not on prescription (GP wouldn't prescribe Imigran and the generics didn't work) £337.50
Total for 2012 - £6,017.50

Jan 2013 - Sep 2013
Hypnotherapy - £35 per week - £1,820
Cranial sacral - two sessions per week, £17.50 per session £1,820
Triptans bought over the counter when Imigran not on prescription (GP wouldn't prescribe Imigran and the generics didn't work) £337.50
Total for 2012 - £3,977.50

Fiona, 32, chronic and episodic migraines for 9 years. 

 In 2011 alone I spent about $10,000 (over 6000 pounds) on chiro, massage, acupuncture, dentistry, medication, naturopath when I lived in Canada. Since being back on the UK, I've probably spent at least another 1000 pounds on trips to the National Migraine Centre, hypnotherapy, meds, massage, Greater Occiptial Nerve Blocks etc. That is probably a low estimate not taking into account all the money I spend on 4head, ice packs, ear plugs, and all the other migraine comforts. 

Daisy, 33, chronic migraine without aura.
On her blog, My Migraine Memoirs, Daisy writes about the fact that migraines prevented her from taking a step up in the career ladder, meaning her salary was cut by almost half. 


So, what should you spend your money on? It is worth trying every possible option, if you have to pay for genuine medical treatments like Botox and Greater Occipital Nerve Blocks privately, do -  but if I had my time again, I'd go straight to the National Migraine Centre and give them £1000 for my first appointment. I really would, considering I'd probably wasted about £10,000 or more, in the 5 years before I found the centre. In the UK we are not used to having to pay for our healthcare. In France you pay 25 Euros for every GP appointment, in the USA everyone has to buy insurance which dramatically effects the cost of health care. We are lucky in very many ways over here but just think, we'd happily spend £25 for theatre tickets, £20 for a night at the cinema, £60 for that new dress. So, instead spend that money on an appointment at the National Migraine Centre where you pay by donation. You'll learn about what migraine comforts actually, well, give you comfort and they'll advise you on other possible treatment avenues. And then give another £25 or more to The Migraine Trust who are leading the way in ground-breaking research and offer support to so many. If living with migraine is going to cost us so much money, let's spend the little we have wisely. In the long run it will add up to far less than wasting money on gadgets and charlatans who offer you 'a cure'

Considering how much migraine costs individuals isn't it shocking that more money isn't being put towards research? What can we do about this? 



Tuesday, 3 September 2013

Special Migraineur Of The Month: MR September, Migraine Trust Chairman!


This is a very special edition of Migraineur Of The Month (MOTM) for two reasons: 1. I proudly present Mr Ian Watmore, the first ever MALE MOTM and 2. Ian also happens to be Chair of The Migraine Trust. 

Ian has had an incredibly illustrious career and his inspiring responses below demonstrate that migraines don't have to be a barrier to achieving your career goals. Being the first male MOTM Ian notes that migraine is often side-lined as a 'neurotic women's condition'. As a woman I understand the problems this stereotype holds all too well but, for a man it must be just as hard to openly admit and seek help for this disabling condition; especially when you hold high profile positions. But you must seek help because, as Ian demonstrates, the sky's the limit if you can get the right treatment. 

I now hand you over to MR September: 

Mr Ian Watmore, an inspiration to all

Can you remember and describe your first migraine?

I don’t have a ‘first’ memory, except that people commented that I was using over the counter nasal sprays rather too much and that is when I admitted to having what I thought were sinus headaches. It was a long journey from there to be properly diagnosed.

Best migraine advice anyone’s ever given you?

Migraine is a condition – it is not a sign of weakness. I worked in a high pressure environment and it was important to me to know that this was not the start of some sort of stress induced breakdown.

Worst Trigger?

My worst triggers are poor sleep, and alcohol, which often go together as I have got older. So I am virtually teetotal these days, which is no bad thing I suppose, if a little dull.

Favourite migraine comfort?

Before I was properly treated I used to deliberately induce nose bleeds, often with the plastic stem of a cotton bud, in order to reduce pressure in my sinuses and behind my eyes. Not to be recommended I hasten to add.

What’s the worst assumption that’s been made about you and your migraines?

Most people say that they never guessed I suffered from migraine, so I must have done a good job of hiding it. Since being more open about my migraine I have heard it described as “not a real man’s” condition, being seen as what “neurotic women complain of”. Unbelievable in 21st Century.

What are you most proud of doing despite living with migraines?

I am proud of having held a number of stressful high profile roles in business, government and sport, which proves what is possible if you get treatment and manage the condition, particularly important for younger sufferers who worry about fulfilling their aspirations. I am equally proud of stopping work last year to support my wife in her new vocation as a CofE vicar – she is unbelievably good at it and her church does such good things for vulnerable people. 

If you could be Prime Minister for a Year what would you do!?

Well I used to work directly for the Prime Minister in No 10 Downing Street, so I have seen what someone can do with that position, and I know that I would be completely useless in that role. However, if by some bad accident of fate it was me, I would probably campaign against what are still so many prejudices in society – nationality, racial, gender, sexual orientation and so on.

For specific migraine examples, the prejudices that migraine is a women’s condition, or it is a malingerer’s complaint, or for someone who cannot handle stress, or is just like a hangover, are all wrong and handicap our efforts to find solutions. I hope by “coming out” I and others can help people take the suffering more seriously, and fund research to help fellow sufferers.


I spent most of my career as a management consultant to some of the biggest businesses in the world, before going to work for Tony Blair as a civil servant in Number 10, then running two government departments either side of a spectacularly frustrating time as the Chief Executive of the Football Association. I am now the Chair of the Migraine Trust and I give my job as The Vicar’s Husband whenever asked what I do for a living.
 ---

Ian, thank you so much for your personal and thoughtful answers. I hope that this post inspires more men to 'come out' as migraine sufferers as the more of you that do - the more chance we have of beating the stigma and finding a cure. 

To find out more about The Migraine Trust visit their  fabulous website
This special edition of Migraineur Of The Month is part of Migraine Awareness Week 2013. 
Find out more here
#morethanjustaheadache

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