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

"Feed Me, Seymour": What comfort foods do you reach for when you have a Migraine?

 What comfort foods do you reach for when you have a Migraine or Headache attack? Do you follow any special eating plan?

In the fabulous Howard Ashman and Alan Menken musical 'Little Shop of Horrors', the giant talking plant - Audrey II - demands to be fed (cue "Feed me, Syemour") and fed blood! Now I seriously hope no one wants blood when they have a migraine - but I can tell you I get some funny food cravings. I asked about to see what other migraineurs felt like when they had a migraine, below is a list!


  • Fishfingers
  • Chips
  • Full Fat Coke
  • Apple Juice
  • Hamburger
  • Bagels with cheese, cucumber and nutella
  • A glass of cold milk
  • Ready Salted crisps
  • Sparkling water with orange juice
  • Herbal Teas
  • Fish & Chips

I've noted before that I want -  what you might term - typical hangover foods when I'm coming out of a migraine, i.e starchy carbohydrate, in the Postdrome Phase. The above list shows I'm not alone (though the above list is a mix of what people craved before, during and after). A general theme is junk food though! Emma at Open Letters On Migraine, noted too that she generally craves sugary, fatty foods. Daisy, at My Migraine Memoirs confesses that she generally feels like a McDonald's McChicken Sandwich! I also, sometimes, get incredibly thirsty when a migraine is on the way - but often - during a migraine itself all I can manage is plain rice and toast, even though I'm one of the lucky few who don't vomit. Teri Robert, at migraine.com - notes that her food cravings depend entirely on the phase of the migraine attack and how nauseous she is feeling. I guess I'm the same too. 


Most food cravings usually, but not always, occur during the Prodrome Phase of a migraine attack. A 2003 study of 120 Migraineurs found that %18.2 of them craved food before the attack. This is why it can be incredibly difficult to know if that chocolate you ate was the trigger to blame, or if you were simply craving sugar as you were already in the Prodrome Phase, so that chocolate was an innocent victim. The migraine was going to happen either way. 

Food and migraine has quite a mythical relationship. In old (and probably some current out of date) medical textbooks Red Wine and Chocolate are listed as the main migraine triggers. This is somewhat of a myth - for the reasons stated above. Obviously, there are some for whom Red Wine, cheese and chocolate may be a trigger - but the number is not nearly as large as is supposed. You have to work out what YOUR own personal migraine triggers are - and some may be food. Alas you have to go through a very methodical (and detailed) process of elimination if it isn't clear to you what food trigger you may have. 

Potential and common food triggers: include Aspartame (artificial sweetener)  GSM, Gluten, Citrus Fruit, Shell Fish, Caffeine, Bananas, Cheese, Alcohol....click here and here for longer lists. 

But for some the above foods items listed are tonics. It's individual and we are learning more and more about triggers. What should also be noted is that LACK of food and dehydration is a major trigger. So small meals, little and often to keep blood sugar levels stable, and plenty of water - is a good idea! 

And although I know it's not good for me - there are two cans of full fat coke, with a yellow post-it note marked 'For migraine use only' - in the back of my cupboard. I also highly recommend having your favourite migraine comfort foods pre-prepared (even stored in the freezer) for when you'll need them. 

Do you follow a special 'migraine diet'? When, if at all, do you experience food cravings? What are your comfort foods? 

Links:
http://migraine.com/blog/what-do-you-crave/
http://migrainememoirs.blogspot.co.uk/2013/09/migraine-awareness-week-2013-little.html
http://migraine.com/migraine-symptoms/food-cravings/
http://www.migrainetrust.org/factsheet-migraine-triggers-10505
http://openlettersonmigraine.com/2013/07/27/dear-diary-eatunwell/


#morethanjustaheadache
#maw2013

This blog is all part of a Migraine Awareness Week Blog Challenge to raise awareness and increase information about migraine. To find out how else you can get involved this week check out the Migraine Trusts' MAW page. 

Tomorrow:
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?

Monday, 2 September 2013

Carousel: “You’ll never walk alone”. Where and from whom do you get most support?

Where and from whom do you get most support? Your GP? Friends? Migraine Charities? How do you find comfort in knowing you’re not alone?


Just this past Friday The Migraine Trust released a statement (or rather a warning) that migraine sufferers in the UK do not receive enough help and support. There are an estimated 8 million of us in the UK alone, isn’t it time we got the help we needed?

Some GP’s are incredibly understanding and knowledgeable about migraine. Others, sadly, are not. But it’s not their fault – most GP’s only receive about an hour’s training on migraine and headache disorders. No wonder I often think that even I know more about my condition than some of the GP’s I’ve seen over the years. It’s’ such a shame because THERE IS SO MUCH that can be done to help the majority of migraineurs – and if GP’s knew about these techniques and treatments there would be a lot less needless suffering. Personally, I believe GP’s do not refer chronic patients to migraine specialists, or clincs, frequently enough because a) they are unaware of how much help specialists can offer patients and b) there simply aren’t enough migraine specialists to go around in the first place. And let's not get into the restrictions and money issues about local PCT's.....

Where can we get help & support?
If you do happen to see a GP and feel uncertain of the treatment you’re receiving, help is at hand. Last September NICE issued guidelines on the treatment of Migraine and Headache – it is available for all to see and is pretty easy to understand. In August NICE also published  Quality Standards for Headaches . According to The Migraine Trust these will: 

The NICE Quality Standards for headache will enable: 
  • Health Professionals to make informed decisions about the best treatment and care for headache and migraine sufferers.
  • Headache and migraine patients to find information about the quality of services and care they can expect.
  • Service providers to examine the quality of the service they deliver and assess improvements.
  • Commissioners to commission only high quality and cost effective services.  Quality Standards will inform payment mechanisms and incentive schemes under the new commissioning system.

You can also get in touch directly with The Migraine Trust if you have any further questions. They have evidence based fact sheets, free, on-line, plus a free advocacy andinformation service. The National Migraine Centre also has a fabulous website and if you don’t feel you’re getting anywhere by yourself, or with your GP, you can book yourself in for an appointment with a migraine specialist. You don’t need a GP referral and you pay by donation. I do believe, however, that building a relationship and understanding with your GP, is vital and can help a lot. But you just might have to help them help you!



I often refer to the National Migraine Centre as migraine mecca. The moment I walked up the cobbled steps in Charter House Square, London, I felt at home. I felt I had finally found a place and people that totally understood and supported me. I think I pretty much sobbed my way through my first appointment as I was just so grateful to see a Doctor who could explain, help and empathise. And who, quite simply, believed me! I had seen so many different specialists, I’d wasted about 5 years being told I was depressed, the pain was ‘in my mind’, it would go away eventually and my condition was steadily deteriorating as a result. The key lesson I gained from my appointments at the National Migraine Centre, was how to live with migraine, not just how to treat it effectively. Triptans had been shoved in my hands a few years earlier but no one had ever taken the time to explain that I shouldn’t take too many, how the life cycle of some triptans and migraines work etc. I was taught tips and tricks that totally changed my understanding of the condition I was living with. My GP also received detailed letters about my condition, which meant I'd get the care I need at the primary level too. 

So, to all those in the UK who don’t feel they’re getting the help and support they need – demand it. You deserve it. It’s your right. The Migraine Trust and the National Migraine Centre and the patient run charity, Migraine Action, are there for you. Don’t suffer needlessly. As they sing in Rodgers & Hammerstein's beautiful musical Carousel, 'You'll Never Walk Alone', because you're not alone. P.S I find it impossible to listen to that song without crying, it's so beautiful. I'm sure all Liverpool supporters agree. 

OK, end of rant.

Below are a list of my favourite blogs and other sourse of information on migraine and chronic pain conditions that I have dipped into over the years. To return to the blog promt, I can not underestimate how comforting and amazing it is to talk to other migraineurs. If you’re not on twitter, sign up now, there is an incredibly supportive community there. I’ve found more support and understanding and advice through ‘on-line’ twitter friends than I have with ‘real-life’ friends…if that makes sense. The Migraine Monologues Book Club is also a huge source of joy to me. I not only learn more about migraine but love discussing the books and other facets of living with migraine, with the brilliant members on-line. People who go through what I go through. If you want to join us, please do. You don’t have to walk alone through life with migraine. 


Other resources and links I use in no particular order: 



And that's just the start. With all this (reliable) help and information available, together, we can beat migraine! 


#morethanjustaheadache
#maw2013

This blog is all part of a Migraine Awareness Week Blog Challenge to raise awareness and increase information about migraine. To find out how else you can get involved this week check out the Migraine Trusts' MAW page. 
Tomorrow:
Little Shop of Horrors: "Feed Me, Seymour": What comfort foods do you reach for when you have a Migraine or Headache attack? Do you follow any special eating plan?

Sunday, 1 September 2013

Phantom of the Opera: “Masquerade” - Behind the Mask, What does a Migraine look like?

Migraine Awareness Week is HERE! Rally the troops, sound the trumpets and make some noise. 
Over this coming week I'll be doing a series of incredibly exciting and life changed blog posts. The first of which is this! It's not too late to join in.
----

What does a migraine look like? Migraine is often called an 'invisible' illness and, to a large extent, this is probably true. It is part of the blessing and curse of life with migraine. No one can see that giant dagger sticking out of the back of your head, the iron vice slowly crunching your skull; to the outside world you look perfectly normal.

Or do you? Close friends and family can often look at migraineurs and tell when an attack is about to strike. I had no idea my left eye shut slightly and that I'd subconsciously start rubbing my left forehead, until Mum pointed it out. In other words, if you look closely, you can 'see' a migraine. I like to think I can pick out a chronic migraineur in a crowd, there is a certain purple shadow under the eyes, a paleness, a pinched look and other tell tale signs that may not be visible to all. So, to kick off this years Migraine Awareness Week I asked some brave fellow migraineurs if they would take a picture of themselves when they had a migraine. As you will see below, the migraine displays itself loud and clear.

Claire, 29, Chronic Migraine without Aura
Fiona, 32, with her Migracap!

Fiona, 32, with 4Head cooling strips


Rachel, 24
Rachel, 24, diagnosed with chronic migraine at the age of 13


Daisy, 33, Chronic Migraine without Aura


Jen, 39, Chronic Migraine without Aura
Her cat, Spike, is a great comfort!


Emma, 26, chronic & episodic migraines since age 17


Me! Victoria, 32&3/4 with ice pack and TENS unit


Amanda, 40, Chronic Migraines, diagnosed aged 21

Bucket at the ready!



As you can see from Amanda's pictures, head pain is only one part of the umbrella condition that is migraine. Vomitting, dizziness, trouble finding words are just a few example of the other delights that go with migraine.

Now can you match the photos below, of everyone without a migraine, to the pictures above? What a difference!!!




Thank you so much to the brave ladies who took part. You're all beautiful.


#morethanjustaheadache
#maw2013


Tomorrow:
Carousel: “You’ll never walk alone”. Where and from whom do you get most support? Your GP? Friends? Migraine Charities? How do you find comfort in knowing you’re not alone?

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