Tuesday, 18 February 2014

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!

Sunday, 1 December 2013

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!

Wednesday, 16 October 2013

NaNoWriMo and Migraines in Fiction

So as November draws close, my thoughts are turning to NaNoWriMo.  For those who aren't aware, NaNoWriMo is National Novel Writing Month, although it's actually an international event and has been for quite some years.  The aim of NaNoWriMo is to write a fiction novel of 50,000 words length in the month of November.

I first attempted this challenge in 2007, having only found out about it after it had started, and although I didn't finish my novel, I made it over the 50,000 word mark after about 25 days (and before the end of November) and was surprised at how much I enjoyed the freedom of writing fiction.
I wrote a zombie novel in 2008 and although I reached over 75,000 words, I didn't reach the end of the novel (again), but as my target for the event had been to reach 75,000 words, I was very happy nonetheless.

My migraines started in 2009 and life was too difficult as it was without throwing challenges like this at it.
Last year though, in 2012, I was unemployed at the time, and so I set myself the challenge of NaNoWriMo once more and happily, it was the first time that I actually finished the novel (with a whole 20 mins of November to spare!) at over 82,000 words.  That was a fiction set in J K Rowling's world of Harry Potter called Muggle-in-Law and you can read it for yourself over on fanfiction.net.

This year, will be my biggest challenge yet.  This will be the first time I will be attempting NaNoWriMo, whilst suffering from migraine AND working full time.

I don't think anyone who doesn't suffer from a similar condition, which requires so much daily management even when not suffering from the episodes at the time can understand why this is such a huge challenge.

My stubbornness is what has made me achieve my targets every time I've attempted NaNo but I need to balance this side of my personality this year to make sure that I don't push myself too hard to hit those daily wordcount targets.
Last year at one point I was writing through blinding pain, determined to hit my wordcount target for the day before succumbing completely to the migraine.  This wasn't clever and I certainly couldn't have done this if I had to go to work the following day, so I need to make sure I keep my stubbornness in check for the sake of my health and my work.

When I was considering what to write about for my novel this year, one theme stayed with me through all the ideas I played around with.  That theme, was that my main character was going to be a migraine sufferer.

In all the fiction I have ever read, and I've read quite a lot, I have never read a book, or a short story, where a character suffered from migraines.

This doesn't mean that my main character's life will be limited in the same ways as my own.  I'll be writing her as a frequent sufferer, but not chronic.  I have decided that I want to write about an extraordinary person, who is afflicted by this.  The migraines won't be the story, they will be something which gets in the way and limits my main character, something which interferes with the story in the way that migraines are not mine or my fellow sufferers life, it interferes with out lives and gets in the way of our own life stories.

I also want my main character to achieve great things, despite migraines.  I think anything we manage to achieve in our lives when we are afflicted by this horror is incredible and since it's fiction, my main character is going to be even more incredible.

So, my 2013 NaNoWriMo novel is going to be about a migraine-suffering superhero!

She won't have superpowers per say, but she'll be a masked vigilante crime-fighter who has a natural talent for it all that she feels she has to use as a force for good.
Migraines aren't something which gives her any kind of advantage, no super-powers, no sixth sense.  Instead, migraines are going to stop her in the middle of a fight, cause her to let the villain get away instead of pursuing them and that type of thing.

I intend to publish-as-I-write on www.amateur-writing.com and I will  be blogging about my writing as I usually do on http://fairydairydaisy.livejournal.com/

I hope you'll read my novel and enjoy having a main character be kick-ass as well as a migraine sufferer!

Sunday, 22 September 2013

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!

Thursday, 5 September 2013

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.

Wednesday, 4 September 2013

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.