When in Pain, Distract the Brain

Distraction is a massive part of my migraine experience.

When I'm in the unrelenting, agonising pain, the only thing which prevents me from going completely crazy is distraction.  Without distraction, the whole world is pain and every second feels like an hour.

The only way I've managed to find to cope with the pain, when I'm waiting for my meds to kick in or when the meds have failed me, is to distract my mind as much as possible.  As much as possible in this case, is still pretty limiting.

If I'm not being too affected by light, then I put the tv on and watch something which requires very little brainpower, like Hollyoaks or Charmed.  As long as it's entertaining enough to distract me but doesn't need to to think about what I'm seeing then it's good enough.

If the light is a problem, or when the pain wakes me in the night and I need to try and sleep as soon as possible to escape the pain and allow the meds to work, I have a different tactic.  This tactic has been greatly improved by a recently purchase as well.

In those times, I put on an audiobook of a book I've read before.  This means that the story distracts me but I don't have to concentrate on it as I know what happens.  I have devices loaded with audiobooks of books I've heard before right next to the bed at all times.

The problem I was having though, was that my big headphones only allow me to lie on my back to use, and since I'm normally trying to relieve the pain my pressing half my face into the edge of the pillow and I'm squirming around then they don't really work and in ear headphones just fall out of my ears.  But now I finally have a great solution to my headphones problem, now I've bought myself some SleepPhones.

SleepPhones are headphones which are inside a fleecy headband.  I wondered before I got them whether they would be as comfortable as they looked and whether the sound quality would be good enough to listen to audiobooks and I'm very happy on both counts.  They are my new migraine distraction saviour.

My mind has turned to the issue of distractions today as I have an appointment at the hospital for my eye problem tomorrow afternoon and last time I had an appointment there I was mid-migraine.  The drops they use to dilate my pupils dilates my vision for 4-6 hours afterwards and I remember vividly the last time how much I needed the distraction.  I was lucky enough for a friend to accompany me and talking with her during all the waiting really helped with distracting me when I was there but as soon as I got home and I didn't have a distraction without my vision, I was just in tears as the pain was taking over everything and I couldn't think through it or beyond it.  This time, I'll make sure an audiobook and my SleepPhones are set up ready so that as soon as I get back they'll be there in case I get struck by migraine again this time.

I really feel for the migraine sufferers who are so sensitive to sound during a migraine that they can only bear a whisper, as they won't have the audiobook option I know that I can always use and the pain just feels like it's ten times worse when there's nothing but the pain filling my head.

I'd be interested to know what other migraine sufferers use as distraction techniques whilst they have a migraine.  Please let me know in the comments!

Migraine Awareness Week 2013 - Les Miserables: “I Dreamed a Dream”

Today's musical inspiration comes from Les Miserables (a good one to thing to watch if you're feeling terrible as it reminds you things could be worse!!) with the iconic song 'I Dreamed a Dream'.

Today's Prompt is: Les Miserables: “I Dreamed a Dream”

Today, for the last blog post of Migraine Awareness Week 2013, Victoria has asked us what our fantasy dream, migraine-free day would be; a day with no limits as a perfectly healthy person.

Believe it or not, this is actually the hardest blog post of the whole week for me.  Trying to think about what I would want to do on a dream day as a perfectly healthy person is just so far outside of the realms of things I'm normally thinking about, so far outside of the box so to speak, that I've been finding it really hard to think of what I would want to do.

I think first off, the perfect day would have to include a lie-in.  I don't get to have a lie-in, even at weekends as I have to maintain my sleep routine very strictly to minimise my migraines normally, so having a consequence-free lie-in would be wonderful.  Followed by a cup of tea and breakfast in bed of course.

The thing I find I'm least able to do with my migraines normally is anything very physically active, so if I was perfectly healthy, and the world is my oyster, then what I would ideally be doing would be playing a game which is physically demanding in London like The Go Game or Zombie LARP.

I'd then gorge myself on masses of cheese and chocolate for lunch, not caring about eating the classic migraine trigger foods only in moderation and I'd have a slice of lemon in my earl grey like I used to but as citrus fruits are a common migraine trigger I don't anymore.

I'd then love to go shopping with unlimited money (we said fantasy, right), something which I usually find very exhausting and migraine triggering.  I'd have someone else there to carry all the shopping of course, but I'd buy my fill of board games, comics, figurines, crafting supplies and even some clothes too!  And I wouldn't be worrying about keeping myself mega-hydrated the whole time too.

I'd then love to spend the evening with lots of friends, getting drunk (as I can't drink alcohol at all as it's a major trigger for me) and dancing the night away, staying up late (something I can't normally do) and dancing to all my favourite music the whole night, ideally at a roller disco (yes I can still skate whilst drunk as I've proven at roller discos before I had migraines).

Yep, that sounds like a pretty incredibly amazing day to me!

Thinking about the ideal day and all the things I'd love to do that I just can't because of the curse of migraine just ends up making me sad though.
Instead, I like to think about things I'd love to do which are more realistic and make the plans, contingencies and take all the measures needed to be able to do them, like I did for LeakyCon last month.


So that brings an end to Migraine Awareness Week.  If you want to find out more about migraines and headaches, The Migraine Trust are a fantastic resource and The National Migraine Centre don't require a doctor's referral to book an appointment with and they also have some fabulous resources.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.

The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Commitment Issues

I have to admit, and those who know me will surely know this already, I have serious commitment issues.

Not to my (long-suffering) husband of course, I'm utterly and completely committed to him.
But in every other aspect of my life I really struggle.

I had to leave the choir I was a member of at the beginning of the year, as I was finding I was missing about 50% of the rehearsals once I was working again as well.  I just couldn't commit to making weekly rehearsals and in a 20 voice choir, that made a difference.

I tried to commit to weekly board game evenings with friends, or a weekly roleplaying game over skype with a friend where I used to live, but I had to cancel so often I felt like I was messing everyone around so much of the time that I'm not even trying to do those things anymore.

Every time I have to cancel on a friend because of my migraines, I feel like the worst friend in the world and I wonder why people even bother still inviting me to things, why they bother to be my friend when I'm so horribly unreliable.

I book tickets to things which need to be booked in advance with such trepidation, weighing up the cost of the ticket with the likelihood that I will have to cancel and be completely out of pocket, as well as letting down anyone else I was going with.
I can't even book a table in a restaurant for my husband's birthday which is only two days away.

Whenever I do manage to go to something I've had to book in advance, it feels like a massive achievement, something to be celebrated!  Like I've climbed the mountain of commitment and truly conquered it.  Then when I end up failing to make my next commitment, it feels all the worse.

This week, in an attempt at finding a fitness activity that me and my husband would both enjoy and that I felt I was able to do, we have booked some lessons in learning to climb.  They're booked for two hours in the evening for four consecutive weeks starting in a couple of weeks, and I'm nervous already that I'm not going to be able to make this commitment.  To manage to be well enough, not only to go to something, but to be active and alert as well, for four weeks on the trot just seems inconceivable.

I have commitment issues, but I'm trying to carry on living life despite it.

Weekend Migraines

I've been suffering a lot recently from the widespread phenomenon of Weekend Migraine.

For me, this manifests in the migraine starting to build from Friday early afternoon and reaching the effective treatment window by about 10pm-midnight.  Sadly by that time I'm usually already knocked out by one of the preventative meds I take making me unable to take meds for the migraine until that window has passed and the pain is so great that it wakes me (trust me, being woken by your brain feeling like it's exploding inside your skull is a really horrific way to wake up).

The irony of not being able to take my attack meds in the right window because of my preventative meds is not lost on me.  As a result I end up losing my whole weekend to migraine.

The Migraine Trust have a factsheet about Migraine Triggers which goes some way to explaining the weekend migraine phenomenon.

The crux of it for my own weekend migraines I believe, is my body's way of managing to push through the things it needs to.  This has proved to be the case when I've handled way more than I normally could and still been unscathed by migraine until after it's over, both fun things like geeky conferences or my wedding and not fun things like work.

So essentially I manage to push myself through my week at work, and then as soon as it's over I'm hit with a migraine.  By the time I then go back to work, in a haze of Migraine Hangover, I haven't had the break I should have had and I find myself again, pushing through the week at work, to be hit my migraine as soon as it's over.

You can see the cycle here.

This weekend it's my husband's birthday and I really don't want to ruin it by being out for the count with migraine yet again! The solution I've come up with, which I desperately hope works, is to take Friday afternoon as a flexitime half day off. I'm hoping this will kick my body out of the routine and either, ideally, not trigger a migraine as a result, or, more likely, trigger the migraine earlier and allow me a chance to treat it in time to abort it and allow me to be reasonably fit for the weekend.

Wish me luck! Oh, and wish my husband a happy birthday with a migraine-free wife!

I'd be interested to hear from other migraineurs in the comments if you also suffer from the curse of Weekend Migraine.

Migraine Awareness Week 2013 - Evita: “Don’t Cry for me Argentina”

The musical for today's prompt is Evita, an Andrew Lloyd-Webber classic which was immortalised famously on film by Madonna in the title role.

Today's Prompt is Evita: “Don’t Cry for me Argentina”

Victoria has asked today about what we want from other people; whether we want empathy and understanding, sympathy and whether we ever want to NOT talk about our migraines.

You probably wouldn't think it from my blog, but I didn't used to talk much about my migraines.  People knew I had them, people knew I cancelled on them.  People even saw me have to ruin parties and hide away in other rooms and leave everything early.  I didn't really talk about how they affected my life every day, I didn't really tell them the extent of them.  I didn't ever talk about what the pain feels like or how much it's ruining mine and my husband's life.  I put on a brave face.

I guess the main reason I didn't talk to people about it in this way, and indeed, why I still only tell people through the medium of my blog and not face to face, is because I don't want to feel a burden on people, I don't want to just be complaining to people all the time, I don't know what reaction I would actually want from people if I did.

Would I want people to try and empathise?  I think that would be very difficult to do and I'd probably just feel like they didn't understand at all if they did.
Would I want people to pour sympathy on me? I think that would just make me feel uncomfortable to be honest.
I want people to understand, and I want to tell them, but I want them to understand without any feeling of obligation in a response really.  There isn't anything they can say which would make me feel better.  When people try to fix my problem by suggesting things I should be doing, I find that so much more annoying than I know I should.  But on the other hand, I wouldn't want what I was saying to be dismissed as thought it was nothing.  So I really don't know what response I actually want from someone; I find it on the whole much easier if I point people towards my blog, hope they read it and understand better for it.

Maybe what I want is for people to be as annoyed at migraines as I am, but then I think it would feel as if that anger were directed towards me rather than the thing I'm being afflicted by which I think of more as a parasite feeding off me and my life.

I guess anyone I talk to in person about my migraines is in a catch 22 when it comes to their reactions really, but the most important thing I want from people is for them to listen.  And when I make cracks about things such as 'it could be worse, I could have cancer' and the like, please realise that migraine is actually stealing my life away from me and any comments like that are just my way of trying to not make you feel uncomfortable about it.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.

The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Rent: “Seasons of Love”

Today's musicals reference is from my best friend's favourite musical, Rent.  I've never had the fortune of seeing it on the stage but she was quick to lend me the DVD as soon as she found out I hadn't seen it and today's song reference is the only one I can actually remember from it.

Todays Prompt is Rent: “Seasons of Love”

Or you might know it better if I say 

"Five hundred twenty-five thousand six hundred minutes"
Today, Victoria has asked about how many days we've lost to Migraine.

I believe there's two answers to this question and I've got no way of answering one of them.
There is the amount of days directly lost to Migraine itself, how many days I've spent in the agony of Migraine pain.
Then there is the amount of days lost to Migraine indirectly. The number of days I've been extremely delicate, trying not to re-trigger a migraine I managed to abort and the number of days I've had to rest and not do what I've wanted to do because otherwise a migraine will trigger.


I can answer the first question, how many days I've lost directly to migraine, as I have been keeping a migraine diary to track these since the beginning of 2010, a couple of months after they first started.

• In 2010, when my migraines had only just begun and I knew almost nothing about them, I lost 67 days to Migraine.  That's 18% of my year lost to Migraine, almost 1 in every 5 days.
• In 2011, which has been my worst year for Migraine to date, I lost 102 days to Migraine.  That's 28% of my year lost to Migraine, about 1 in every 3.5 days.
• In 2012, I wasn't working for 6 of the 12 months which greatly reduced my migraines meaning I lost 75 days.  That's 21% of my year lost to Migraine, more than 1 in every 5 days despite this being a big improvement.
• At the end of August in 2013, so two-thirds of the way through the year, I have lost 64 days to Migraine.  That is 26% of my year so far, more than 1 in every 4 days and almost as many days lost in two-thirds of the year as I lost in the whole of last year.

As for the rest of those days, if I had to estimate, I'd say about 90% of the remaining days I have been taking drastic measures to avoid migraines, i.e. not being able to do any of the things I want to be doing, or already in a lot of head pain, just not migraine pain.

You can see why I feel like Migraine is stealing my life and why it feels like I get to spend so little quality time with my husband.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.

The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.

Migraine Awareness Week 2013 - Mamma Mia: “Money Money Money”

Today's blog prompt musical is Mamma Mia which my Mum and I went to see without knowing it was such a Mother/Daughter show beforehand so I remember that trip fondly :)

Today's Prompt is Mamma Mia: “Money Money Money”

Specifically how migraine has affected my finances.

Migraines have heavily impacted my finances.  The largest way it has had an impact has been on my earning potential as I have been forced to leave the career path I was on which was as a Project Manager and go back to being a systems support analyst, more than halving my income.

I obviously spend a lot of money on the prescriptions for all the medications I am on, both preventative medications and the ones to treat the attacks themselves.  There are a lot of other ways in which migraine affects my finances but I went into that in a previous post in June for the American Migraine Awareness Month so if you'd like to read more about it then please read my post from then.

I do however, feel grateful that I don't live in the USA and have limitations on how many medications I can have imposed by an insurance company or have insurance refused and have to pay for all of my medications.  I don't believe the NHS system is wholly right though.  For cases of a chronic illness which doesn't have a cure or isn't going to go away, such as migraine, I believe that prescriptions for that specific illness should be free on the NHS.

Migraine Awareness Week is 1-7 September and is dedicated to trying to educate people that Migraine is more than just a headache and to try and raise money for Migraine research.

The Migraine Trust are funding a dedicated migraine research programme - the only programme of its kind in the UK.  They need £130,000 to fully fund their new line of research and one hour of research can be funded by a donation of £35.63.  Please donate to The Migraine Trust if you are able to and hopefully this research could bring us all closer to a cure.