Botox is Magic

So I haven't made a blog post in a while, largely because the NaNoWriMo challenge was so exhausting.  I'll be doing a catch-up of my Month in Review posts soon which I haven't done for a while now but in the meantime, my big news is about Botox.

I had my usual appointment with the specialist nurse at the Headache Clinic at York Hospital at the end of November.  We discussed my medications and as things had been pretty bad for the 3 or 4 months prior to it, we both felt something needed to be changed as the medications I was on just weren't having enough of an effect.

She told me how they were going to be opening a botox for migraines clinic sometime in the first quarter of 2014 and that I should get myself referred for it then, which was GREAT news as I thought I was going to have to take myself down to London to The National Migraine Centre to be able to get the botox.

In the meantime, we decided I would start trying the last of the daily preventatives which I haven't tried yet, topiramate.  That's actually an anti-epilepsy drug and the reason it has been last on my list to try is because the side effects can be pretty harsh.

Excitingly though, I got a call from my specialist nurse the following day asking if I would be willing to be one of the two people they need to do the Botox on during their training day to be able to be certified to open the clinic.  I leapt at the chance!

So I didn't change my daily preventative medications at all, as we want to keep everything else as stable as possible to be able to fully gauge any effect of the Botox.

For Botox for migraines, it involves having a total of 31 injectons in the forehead, side of the head, back of the head and down the neck.

As someone who is terrified of needles and had to be taken out of class early when it was injection day at school and with all the hissy fits I'd throw about it I'd be back in class after everyone else was done, you can imagine this isn't something I was particularly looking forward to.  As any chronic migraineur will say though, I'll try anything if there's a chance it could help.

Each injection hurt, some sites more than others.  I thought I'd find that easier since I suffer pain on a daily basis but it was a sharp pain which is such a different kind of pain to my daily headache and my migraines.  They stopped hurting almost as soon as the needle was out though, and it was also strange to have pain go away so quickly.

I had a really bad headache for the following few days but then it was like a miracle.  I had over 3 weeks without a migraine!  I still had daily headache but such a long gap between migraines is just so unprecedented for me!

So it was just before Christmas when migraine arrived and when it did, it wasn't as bad as my migraines usually are.  My migraines normally come in at a 7 or 8 out of 10 on the pain scale, but this one was a 6.

Unfortunately, it was about this time that my recurring eye problem came back, and with the blind spots in my vision in one eye, comes exacerbated migraines.  So the migraine fairy came to visit again as soon as Christmas Day (at 3am having been woken by the pain, I was literally swearing at Santa!).  They came thick and fast then until I got myself an urgent referral appointment at the hospital and got some steroids.

Since getting onto the steroids, I got another fabulous (almost) 3 weeks between migraines, at which point I declared that Botox is Magic!

Sadly now, the Botox is wearing off.  I can tell this by the increased frequency of the migraines of course, but also by the fact the middle part of my forehead is getting some movement back!

I'm due for my second round of Botox on 7th March and I'm hoping to get as good results on the second round as I had on the first round and hopefully not obscured by anything like my eye problem then as well!  I'll also be asking about coming off Amitriptyline as a preventative since I haven't really felt any improvement from being on it and it leaves me so exhausted all the time that I think, if anything, it's making me worse.

The frustrating thing though, is that if the Botox works really well and after the second round I no longer fit into the arbitrary definition of 'chronic', then I can't get it again on the NHS as you need to be 'chronic' to classify to get it.  So if it works, I can't have any more, until I deteriorate to 'chronic' again, but if it doesn't work that well and I'm still 'chronic' I can have more!  Crazy.
I looked into paying to get it done at the National Migraine Centre in London but at over £600 plus the travel to London, I just can't afford that.

I look forward to sharing how the second round of the Botox goes after I've had in and in the meantime I have to ride out the Botox wearing off and the migraines getting worse between now and then!

NaNoWriMo Victory!

When I started out the NaNoWriMo challenge to write a 50,000 word novel in the month of November, a difficult challenge in itself but attempting this whilst working full time and suffering from chronic migraines, I had no idea if I would be able to do it or not.

The most important thing for me to ensure, was that I didn't push myself in attempting it and cause more migraines because of it.

This was assisted by the fact I had a week of holiday booked from work during November, but migraine thwarted half of that week for me even.

Over the course of the month, there were only 6 days where I wasn't able to write anything at all though, so through managing to write through pain on many of the days and managing to catch up the 7000 words I had fallen behind on the final day, I'm happy to say that I managed to write 50,035 words in total!

My story is about a young lady called Laura Layton who becomes the superhero called Striker.  She suffers from migraines and has to contend with this when she is crime-fighting.
I haven't quite finished the story yet but it will be finished in the next week or so and you can read it for yourselves at either amateur-writing.com or at my NaNoWriMo livejournal page.

Most importantly, I only undertook this difficult challenge to raise money for migraine research and support at The Migraine Trust.  My motivation through the whole month and especially on that final day when I needed to write that mammoth 7000 words, was to raise money for this important cause.  Please, if you can spare anything at all, I'd be very grateful if you could sponsor my NaNoWriMo feat.  If you are one of the wonderful, generous people who have already sponsored me, thank you, you made it all worthwhile!

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.

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.

Migraine Awareness Week 2013 - Little Shop of Horrors: "Feed Me, Seymour"

Today's blog prompt is in honour of one of my favourite musicals, The Little Shop of Horrors.  If you haven't seen it, go and watch it now!

Today's Prompt is Little Shop of Horrors: "Feed Me, Seymour"

For today's blog, Victoria has asked about whether we have any migraine comfort foods or whether we follow any special eating plan.

I confessed in a previous post how the only food I can usually bear to eat during a migraine is a McDonald's McChicken Sandwich.  Not exactly healthy but everything you think about eating just turns your stomach then you eat what you can.

Sometimes I'm able to eat normal food during a migraine, although every bite has to be forced down.  Sometimes all I can eat is some raw baby corn.  Trying to force myself to eat during a migraine is a battle I face all the time and a stress my husband has to go through every time as well.

With regards to a special eating plan, the advice I received from The Headache Clinic at the hospital is to eat little and often to try and level out my blood sugars as simply missing a meal can be enough to trigger a migraine.  I don't have a large, or even an average appetite though.  In order to try and achieve this I often have to force myself to eat even if it makes me feel sick making food more of a chore than a pleasure.

I haven't found any particular foods themselves to be trigger foods for me but the types of foods which are common triggers I try to have only in moderation in case an excess of them causes a migraine for me, and I've definitely found that alcohol (and sadly, in particular beer) is a trigger for me so I'm pretty much teetotal as a result.

Food feels like more of an enemy in my life than something sustaining me but I hope my relationship with food gets better in the future.

Photo by bumblepufff

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 - Carousel: “You’ll never walk alone”

Today's musicals prompt is one which I haven't actually seen (there are some which have escaped me, just not many!) and that's Carousel.  The song is one more associated these days with Liverpool FC so far I'm concerned, but that might just be my Mum's influence!

Today's Prompt is Carousel: “You’ll never walk alone”

Victoria has asked who we get the most support from in our lives and how we manage to not feel alone.

I've spoken in some length before how I get the most support from my husband; I really believe that no-one else in the world knows how my life has changed since migraine came into it and just what it costs me, with respect to not only the pain I go through on an almost daily basis but in all the things I'm not able to do which I'd like to.  If you'd like to read just how much his support means to me then read the letter I've linked to which I wrote to him in June.

I've been lucky enough to get some more daily support since I wrote that letter in June though.  A friend of ours has temporarily moved in with us whilst she sorts out somewhere more permanent to live and as someone who instinctively plays the hostess, I was worried before she moved in that I might find that an extra strain.  I had to consciously force myself to not hostess her when she first moved in and it didn't take her long to understand what I needed in order to try and stay healthy and she quickly started looking after me in the small ways that make a big difference and she realised that if she asks if I need help I always say no so she just does things to help instead, very wise!  This summer would have been much harder without her, so thank you Lali!

My other friends, who don't see what I deal with on a daily basis, are understanding better these days which I think is partly because I made a conscious effort to talk about my migraines more (they're probably sick of hearing about them now) and partly because of this blog which has allowed me to explain things in a much clearer way that I ever would in person.  This means when I have to say no to being able to do things, they understand why and when I have to cancel at the last minute or leave early, they understand why and that understanding makes a big difference.

Lastly, and certainly not least, is the community of fellow migraineurs which I have found online.  I've talked about them before but it's amazing the world of difference it makes being able to talk to other people who really do know exactly what you're feeling, exactly what you're going through.  Not only that aspect as well but being able to talk about different things each of us have tried, what medications our doctors are using, what books we've found helpful; it's something I couldn't get from my GP or even from The Headache Clinic I go to at the hospital.

I feel very lucky to have all of this support and understanding in my life, thank you all.

Photo by Jacquiscloset on Flickr.

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 - Phantom of the Opera: “Masquerade” - Behind the Mask

So Migraine Awareness Week has now begun!  As previously mentioned, Victoria from Migraine Monologues has put together some blog prompts for us bloggers for this week.

She has based all of the prompts on musicals which is a theme I particularly love.

Today's Prompt is Phantom of the Opera: “Masquerade” - Behind the Mask

For this post, Victoria has actually asked for fellow sufferers to send her photos of themselves during a migraine and on a non-migraine day for comparison.  If you really want to see a highly embarassing photo of me in massive amounts of pain then go and take a look at the post on her blog.  I took the photo as a selfie and stopped clutching my eye to show my whole face.  There really is very little to see there to represent the level of agony, the explosion of pain happening inside my head, how much it feels like gouging out my own eye would manage to relief the pain, how it can sometimes feel that I'm dying.

So although Migraine is an invisible illness, I put on a mask to hide the pain I'm in for a large amount of my time.  A lot of the time between migraines I'm still experiencing what most people would class as a bad headache and I'm not allowed to take anything for them else I'll fall into Medication Overuse Headache.  The mask (or as I've talked about before, The Brave Face) has become something I put on in the morning in the same way as I put my clothes on.

Even though I'm quite adept at hiding how much daily pain I'm in, the signs that something beyond a daily headache is growing slip through which is evidenced by my husband often being able to tell before I can that a migraine in on its way.  This isn't just how I look (like when he notices I'm holding one side of my head or one eye) which gives me away but how I'm acting and how I'm talking.

What is impossible to gauge from photos is how speech seems to elude me when I'm suffering from a migraine.  It's a struggle to get any of the words I want to say out, and my speech becomes slow, broken and slurred.  That's impossible to hide from people and I reached that point at work once - I had to hide in an office which wasn't being used at the time, with the lights off and I sat on the floor in a corner.  One of my colleagues stayed with me whilst I waited for a friend to come and pick me up and she saw and heard me in migraine for the first time.  I was incredibly embarrassed and when I had to walk past my office to leave when my friend arrived, I was just desperate for none of them to see me in the state I was in.  Embarrassment for something completely outside of my control might seem like an odd emotion but it was the inability to keep the mask on which was so horrible.

It wasn't until during this last month that I realised how normal it is for me to put on my mask, when I had people comment at how I had coped so well to be completely fine during an extremely busy and stressful week at work, when in fact I was dealing with a massive amount of pain at the time and felt anything but fine.

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.

Coming Soon - Migraine Awareness Week!

Every year the fabulous people at The Migraine Trust promote Migraine Awareness Week which will be happening from the 1st to 7th September this year.

You can follow the conversations of the week by using the hashtag #morethanjustaheadache which epitomises the message from The Migraine Trust.

For my part, I shall be following the lead of the wonderful Migraine Blogger Victoria of Migraine Monologues as she has used the inspiration of the blog prompts from the American Migraine and Headache Awareness Month in June to create her own blog prompts for Migraine Awareness Week.

The first of these prompts will mean that I will be, terrifyingly, posting a photograph of myself, onto the internet (which as we all know is forever) during a migraine.  I never had any inclination to photograph my pain but did in my most recent migraine especially for that post. Read at your peril!

Furthering my immortality onto the internet, I'll also take this moment to tell you about the Travelling Diary which is a project run by The Migraine Trust.
There are, in fact, several diaries, all of which are sent out to migraine sufferers all around the UK who then fill in two or three pages of words they wish to share with other sufferers.
All of the entries are then published on Flickr for all to see.
I was sent the diary myself and filled it in on the 2nd of June this year.  You can read the entry for yourself if you're interested in seeing what I wrote.

For now, so long, and you'll see me soon blogging for Migraine Awareness Week!

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My Migraine History

As I sit up late at night, much later than I should be be, but unable to sleep because of the headache I have at the moment (migraine hangover), I thought I'd post a little on the history of my migraines.

They started about three and a half years ago now, shortly after I moved to Norwich. The first one was terrifying, I thought maybe I had a brain tumour or something.  I was at work in Norwich, staying later than usual because I was performing an update to the system which had to be done at that time as it had been pre-arranged.  I'd had a headache building through the afternoon but I had no idea what it was building up to.  By the time I begged my (then) boyfriend (now husband) to come and pick me up from the office I was in blinding agony. It felt like my head was splitting in two and I wanted to gouge out my eye as that's what it felt it would take to relieve the pain (it wouldn't have of course, which is why I didn't!). I think he realised how bad it was when the tea he had brought me in my travel mug to make me feel better just made me want to hurl and I tipped it away. That first migraine lasted for the rest of that day but was thankfully gone by the next day.

I had no idea what had caused such a horrific and incredibly scary headache but as it had gone away, I moved on.
About a month later it happened again, no nausea this time which is what made me assume it wasn't a migraine as I thought all migraines had nausea.
About a month later it happened again, and it was obvious then that it was becoming a trend.  They were usually happening immediately after something big & stressful, like the Saturday night implementation of a project I'd been working on for months.

I believe that a collection of factors triggered this condition in me. A few months earlier I had gone through an extremely stressful breakup, I then moved to Norwich into a house far too small for both mine and my husband's things and it was a place I was never happy to be in. The most important factor though I believe, was that when I moved I kept the same job to work from the Norwich office instead of the London one but on the proviso that two days a week I work from London, to be in my desk at the same times I would be normally in Norwich. This was meant to be the same two days each week but it rarely was, changing frequently and unpredictably. It meant that I was getting up about 3 hours earlier two days a week and travelling a two hour train journey there and a two hour train journey back. I believe this was the thing which was the final straw for me and triggered my migraines. Travelling has consistently been a major trigger for me.

I've always hated going to the doctors so my husband had to practically drag me there.  The first doctor I saw suspected migraines and gave me Migraleve, he gave me the type with anti-nausea stuff in it, despite the fact I'd only had the nausea once, and because it contained that I could take it so infrequently that it was useless and barely touched it anyway, so I started self-medicating with paracetamol & codeine - that didn't stop the pain but it did lessen it a bit.

As time progressed, so did the durations of my migraines. They eventually settled on being almost always 3 days long and I had to start missing work with them.

Almost a year after my first migraine and about 6 months of keeping on visiting my doctor's surgery, I was finally prescribed a triptan and something to take every day to try to prevent the attacks from happening.  This was propranalol, a beta blocker used for heart attack patients and also commonly for people who need to calm their nerves like stage performers and snipers!  I later learnt that other than triptans pretty much all the treatments and prevents for migraines have been developed for other things and it's a happy coincidence that they help with migraines which makes me wonder how many things could help if investment was put in, but that's for another post.

Anyway, my doctor who prescribed the triptan to me (sumatriptan), triptans being a specialised type of medication to treat a migraine attack, told me that the medication was extremely expensive so he would prescribe me only 6. He never explicitly said "so only take them if you really really have to" but that's the impression I got and I felt like I was wasting NHS money every time I took one for it to only help a bit. They're actually not that expensive and I certainly shouldn't have felt bad about it.

A year into my migraines and I was trying everything anyone suggested to try and stop them. I was having to take more and more time out of work and they were sending me to Occupational Health which scared me and made me more stressed. Whenever I returned to work, always with the dreaded migraine hangover (imagine a really horrible hangover and how bad that feels, with the pounding head, the unquenchable thirst and sometimes nausea, that's the day after a migraine has finished for me and so many other sufferers), I was expected to pick up from where things were immediately and be totally on the ball and working triply hard to make up for the time I had been off. That was impossible of course, and furthered my stress.

Occupational Health recommended a trial of reducing my travel to London to two days a month instead of two days a week and my migraines decreased in frequency dramatically. When the three month trial was up, now 18 months since my migraines first started, they reverted me back to the previous two days a week.

It was shortly after that me and my husband announced that we were expediting our plans to move to York in an attempt to help me find the peace I was needing to help me. I started a new role as a Project Manager on a 1 year FTC when I moved, but working for the same people in London though thankfully then without the travel to London. The GP I registered with was so much more helpful than any of the ones I saw at the surgery in Norwich and I was thrilled.  We had even found a house to buy almost immediately!

Things were just starting to look better when spots stated appearing in my vision in my right eye. I was referred to the hospital and told I had something called PIC.  I had lesions on the back of my eye corresponding to the spots in my vision. They told me they could leave me untreated and it would fix itself but one of them was too close to the centre of my vision and I had to be treated. I won't say what happened but I consider it to be a trauma on my eye and it was horrific to go through. The degraded vision, the trauma and the stress all went to increase my migraine frequency and I found myself in a near endless cycle of migraines back-to-back, wiping out most of my August and September of that year, now two years since my condition started.

My GP had already referred me to the York Hospital Headache Clinic by this time and by the end of September he signed me off work for 3 weeks until my appointment there. In those three weeks I then had only one migraine, the stress of not trying to work through the lesser headaches between the worse ones finally being lifted.

I learnt at the Headache Clinic that I had fallen foul of Medication Overuse Headache, essentially the drugs I was using to treat my migraines was causing more migraines. Since that visit I have been strictly limited to only 6 treatment days a month which has meant some very painful completely untreated migraines. I started a plan with them to try out various different triptans, a new medication plan of attack when a migraine occurred, and understanding of triggers and thresholds. I learnt a lot and I continued to do so with each subsequent appointment too.
I was doing better for a few months after my trip to the Headache Clinic but in the January. Spots appeared in my vision again. This exacerbated the migraines again and this time it wasn't PIC as there were no lesions. 15 months later as I write this they still don't know what it is and I still have the spots, currently in a blanket of small spots across my right eye vision with a large section wiping out almost all my vision to the right of centre.

I was experimented on, I was put on steroids, all in the run up to my wedding in the June.  Worse than all this though, was that my work started putting me through disciplinary procedures. The outcome of each meeting was that I was already doing all I could and I should keep doing all that and here's a formal warning. My migraines, of course, became terrible again.

I was seeing a clinical psychologist and an acupuncturist both of which I was referred to by the Headache clinic during this time. Neither of them particularly helped, the psychologist said I needed to leave my job (which I knew already) and acupuncture sadly didn't help me at all.

By May I was signed off work for 3 weeks again as I had barely seen a day of April (with only 6 treatment days allowed in a month!) returning to work just before my wedding. It was at that time I started on Naratriptan, the right triptan for me! Finally one that did what it was meant to and aborted the migraine if I caught it early enough. The downside being that I'm left a bit spacey and prone to sudden tiredness but that's incredible compared to a three day migraine!!
By the time I returned from honeymoon I was told I didn't need to work the last 2 weeks of my contract and was given garden leave until the end of June.

Once I wasn't working, although job hunting and being unemployed was stressful, it was such a massive weight off my shoulders to no longer be working where I had been and for who I had been that my migraine frequency improved to only one migraine every two weeks. This was life-changingly better, especially with a treatment which would abort the migraine most times.

I was discharged from the Headache Clinic at my following visit in the October which at the time made me felt like I was almost a normal person again but in hindsight I shouldn't have let them do.

I started my new job at the beginning of January. The most stressful day in my new job is less stressful than a normal day in my old job, and the commute is a nice drive in York during which I listen to an audiobook making my commute something to look forward to and enjoy. Despite this, my migraines have increased in frequency and I've had to miss a few days of work when the migraine either hasn't been aborted or has been re-triggered.  My GP has re-referred me to the Headache Clinic and I'm hoping they'll have more ideas for me to try and maybe the future will look brighter.

My Everyday Life with Migraines

So, what a lot of people don't realise is how much of an impact migraines have on the life of a chronic migraine sufferer.  With migraines being episodic then you'd be forgiven for thinking that my life is only affected by them when I have an attack, which is very frequently, but it's so much more than that.

To explain, let me tell you about 'triggers' and 'thresholds'.  When most people think about what can cause a migraine attack, they think about 'triggers' like "my mum always gets a migraine whenever she has some cheese" (usually followed by something like "so you shouldn't eat cheese and you'll probably be ok then") which massively over simplifies the conditions it takes to cause a migraine (as well as the fact that it's different for every single sufferer).

As humans are complex beings, it's a lot more complex than that.  It's usually a combination of factors which leads to a migraine and that's where thresholds come in.  Infrequent sufferers have a high threshold which must be surpassed before they are hit by a migraine.  Chronic sufferers like myself have a much lower threshold to start with.  Then there are all the other factors which lower the threshold - those things that people think about as 'triggers', they're threshold lowerers, so a stressful day will lower the threshold, a late night will lower the threshold, in some people's cases certain foods will lower the threshold, for the majority of women the threshold is lowered hormonally twice a month at ovulation and menstruation, and many more reasons.

As a chronic migraine sufferer, my life revolves around trying to keep my threshold as high as possible.

• As travelling is a huge threshold lowerer for me and most of my friends live elsewhere in the country, then I rarely get to see them anymore.  If I have plans for a weekend then I can't be doing anything the weekends either side of that and ideally I take time off work either side like I have done this weekend for a simple day trip to London on Saturday.
• Specific food types don't have a big impact on my threshold (though I have the common offenders only in moderation) but my hydration level has a huge one, so every minute of every day I have to be thinking about my hydration level.  If I let it dip a bit then that lowers my threshold significantly.  This also means that it's only on very rare occasions that I can have an alcoholic drink, about 3 times a year I reckon and only ever one drink on those occasions, except on my wedding day when I had two over the course of the whole day.  I've discovered an alcohol-free version of a beer I really love which means I don't miss the taste as much but I drink those sparingly too as when I'd have 2-3 of them I've had a migraine so I think there may be something more to beer as well.
• Physical exertion lowers my thresholds which I've found really hard to learn to manage.  At the time you feel fine, you want to run around and enjoy whatever it is you're doing and you feel great so why shouldn't you.  It's later on when the migraine hits though so anything physical I have to weigh up beforehand where I think my threshold is at the moment based on all the other factors, which is very difficult to judge sadly.  Physical exertion you might think of solely as running around or doing something strenuous but it also includes the simple act of getting up and going to work, this simple act significantly lowers my threshold and there's very little I can do about that one.
• Although I don't have much of a problem with specific foodstuffs, blood sugar level in general is something I have to be constantly aware of.  The advice I've had from my specialist is to eat little and often but that's something which is very difficult for me to achieve for a couple of reasons, one being that I'm half of a pair, we have our meals together when we're not at work so if I'm cooking meals for the two of us, little and often is very difficult to achieve then.  The second one is that I have only a small appetite which means if I have something small and snack-like (like a graze box for example, or a biscuit) then I literally can't eat anything for about 6-8 hours.  I never used to eat breakfast which contributed to my migraines so making sure I always eat breakfast now is important, a missed meal is a disaster and I have to be conscious to not let myself feel hungry, if I feel hungry then my blood sugar has already dropped.  This, together with the hydration, meals I am having to think about what I'm eating and drinking all day, every day, which can be exhausting in itself.
• Regular commitments are a real struggle for me.  I've been in choirs all my life and it's a part of who I am and something which is really important to me.  I was in a great choir here in York called Soon Amore but I had to leave the choir a couple of months ago and I won't be able to re-join unless my migraines significally improve as I was missing too many rehearsals (I was making it to about one in four of them).  Anything which relies on me regularly being somewhere or doing something is extremely difficult as I have to cancel so many times.  The act of having a regular commitment in itself is stressful though, see the last point on the list.
• When people are happy because it's a 'lovely day' outside, I sigh with sadness as that means a day of hiding indoors away from the sunshine.  Bright sunlight and especially sunshine when you're on the move and it catches between trees so it flashes over and over again lowers my thresholds so I have to be careful to have my prescription sunglasses with me all the time but that isn't always enough to help.
• My vision is general is a problem.  I've had an ongoing eye condition for almost 2 years which causes spots in the vision of my right eye and intermittent flashing as well.  This means my left eye is having to work extra hard and my brain has to keep working out that the spots aren't meant to be there and keeps on filling in the gaps (based on what the left eye sees), so the worse my vision gets the more of a strain it is and the more migraines I get.  I'm considering trying an eyepatch to try and mitigate this as a factor but it seems a little extreme and would give me problems with depth perception when I'm driving.
• Hormones are a problem for every woman as our thresholds are lowered at times of ovulation and menstruation  i.e. every two weeks.  I was getting migraines every two weeks like clockwork but I'm now tricycling the combined pill to keep my hormones level to mitigate these but being on the pill for a long time carries its own problems and risks, including causing migraines.
• A regular sleep pattern is very important to maintain for migraine sufferers - going to bed at the same time each night and getting up at the same time each morning is very important.  A lie in at the weekend of just half an hour can be enough to cause a migraine.  This is why my alarm goes off at the same time, 7 days a week.  The problem I have is that I suffer with insomnia, which is even worse when I have a headache or a migraine, so for me insomnia is a cause of my migraines.  Incidentally, I believe it was this area which was a major factor in causing my migraines to start (see my post on My Migraine History)
• The last threshold I have to constantly manage and be mindful of, and the one which has the single biggest impact for me, is stress.  It's difficult to explain this one; when people think of stress they think of a really stressful day at work, or maybe exams when they were at school, perhaps they think of trying to move house, starting a new job or taking their driving test.  Those things are stressful but they tend to be occasional stresses, those things would without question cause a migraine for me.  There are much lesser stresses though, the every day ones, the utterly unavoidable ones.  Just being in a work environment is a stress, just seeing people, any people for anything, is a stress.  Going to the supermarket is a big stress.  All of these things lower my threshold every single day.  Let me say that again as I don't think it's easy to comprehend how much of an impact that is on my life, the mere act of making food, of shopping, of going somewhere else, of even seeing a single person, lowers my threshold.  This means that I have to spend a lot of my time at home just resting, not even seeing my husband, I can only see friends on one evening a week and that's a strain.  I have to constantly try and monitor what my stress level is currently at, even the most minute of levels, and do all I can to mitigate that becoming a migraine. This alone takes over my life and stops my husband from being able to enjoy life as he would like to with me.

On top of these things dictating how I can live my life, or rather how little I can live my life, there are the migraines themselves.  When they happen, if I'm lucky then I catch it early on, I take my attack meds, sleep, rest and it aborts the migraine.  If I'm not lucky then either it doesn't abort the migraine or it re-triggers.  My migraines usually last for 3 days and when I am lucky enough to manage to abort a migraine, my brain seems to know it's still meant to be experiencing the migraine and I'm very fragile for the 3 days I would have had the migraine for, with the smallest of things being all it takes to re-trigger that migraine and when that does happen it starts from the beginning of the 3 days and it's impossible to abort it.  During these times I manage to go to work though I speak and move as little as possible whilst I'm there and I have to effectively hibernate whilst I'm at home, unable to cook etc.  When my migraines occur currently on average about once a week, this is a large proportion of my time.

So there you have it, that's how I live my life as a chronic migraine sufferer and what a huge impact they have on my life even when I don't have a migraine at that moment.  This is one of the biggest things which people don't understand about chronic migraine sufferers or any similar episodic illness, that your life is drastically changed and impacted all the time you're not having an attack as well. And if any of that made you want to cry, spare a thought for the fact that crying is a threshold lowerer for me but sometimes I just have to.

I'd be interested in people leaving comments please, either to tell me if this is in line with what they were expecting my life to be like now or as a sufferer themselves if they have found their lives so impacted or even more?

New Blog!

So this is my new blog as a place to talk about my migraines.  I'll be talking about how they affect me, how they affect the people around me, what I'm doing to try to improve them, my journey through treatments with my doctors, things I learn about them and anything else relating to them that I want to share.

From discovering other people's blogs recently, I've shared their words with friends and found my friends have gained a greater understanding of what I'm going through so I thought a place to put down my own thoughts would be a good idea.

I'll be recommending other blogs which I've found interesting, helpful or insightful so if you're interested in more beyond my blog then you'll know where to go.

For now, I'm going to spend some time thinking about what I want to talk about first, and as I'm currently on a migraine hangover then now probably isn't the perfect time as I don't tend to think all the straight through pain.

In the meantime, please bookmark me (or RSS or whatever the cool kids are doing these days) and comments are always appreciated :)