Sleep, perchance to dream...I wish!

This is a typical scenario if I don't sleep well:

Scene: Tube Station, Morning. 

Innocent Bystander: Miss, I think you dropped your train ticket.

Me: WHY GOD, WHY!!!?!!! [starts sobbing hysterically on Innocent Bystander]
         I'm not normally like this, I just didn't sleep properly.

Innocent Bystander: Your nose is dripping on my suit. I'm very sorry, but that's my train so I need -

Me: I just can't sleep [sobbing harder now] Do you understand? I HAVE to sleep.

Innocent Bystander: I've just missed my train and I'll be late for work now, so I -

Me: Why do you hate me?!

And so on and so forth....

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Just to be clear, the above hasn't actually happened, but similar scenarios nearly have. If I don't sleep I'm a wreck. I'll pour orange juice into my morning tea instead of milk. I'll cry if someone asks me a totally innocent question but more importantly, a buggered up sleep pattern leaves me vulnerable to migraines. I think migraines also make me cry.

We migraineurs are told from birth (well from the moment we are diagnosed) that a 'regular sleep pattern', or (this is my favourite) 'good sleep hygiene' is VITAL TO OUR LIVES. Too little or too much sleep can trigger a migraine! See it's stressful already!

I was also brought up by a mother who believed that lack of sleep was the root of all evil in the world, and most illness.  As such, I do actually believe that there are very few problems that can't be solved by the mighty power nap. Try it - it's especially good if accompanied by a cup of tea, a copy of a trashy magazine such as Hello! or OK and chocolate (which I can't eat anymore). But apparently naps are bad for 'sleep hygiene'. Or long ones are because they ruin your chances of getting to sleep again at night. So I try not to indulge too often.

  

This is my cat, Chipster, asleep!!  

He sleeps so heavily I could do this to him! Serves him right!

Recently, however, I have been plagued by insomnia. This is not a new problem for me. I've blogged here about how a rude interruption in sleep triggered a migraine. When I was at my worst migraine wise, in '04, I had no regular sleep pattern. The first thing my incredible physio rehab lady did was get me to write down when I went to bed and when I got up. She told me to stop obsessing about how many hours of sleep I got but to become aware of trying to regulate the times, to keep them as similar as possible. i.e the aim is to get up at the same time every day, even on weekends. Many migraineurs get 'weekend migraines' and the theory is it might have something to do with a variation in routine. i.e they sleep in longer, suddenly eat/drink do different things. Every migraine specialist will tell you that the migraine brain likes routine. Dull I know. 

My problem with all of this is HOW THE HELL DO I GET TO SLEEP AT NIGHT
and when you wake up at 4am with a raging migraine, have to give yourself an injection, the last thing your body wants to do is get up at 7am when the alarm goes off. Sleep does help you heal after all. Similarly, when a migraine starts  it's often wise to try and get to sleep, for me that's the best treatment (along with my triptan) so I'll get myself to bed if it's the afternoon or morning. Obviously, this can mean it's harder to make yourself go to bed again at a sensible time later that night. I do try to, however. I know I feel and function far better when I achieve this ideal pattern.

When a migraine has disrupted my routine I like to think of it as migraine jet-lag. So even if I've spent the afternoon in bed with a migraine, I'll still make myself go to bed and get up at a sensible time. If I do get a migraine in the middle of the night I won't, however, force myself to get up early as that could risk the migraine worsening. But treating it like jet-lag, i.e trying to get back to 'normal' time as soon as possible is how I try to approach it. But I do wish more specialists would recognise this aspect of sleep difficulties for us migraineurs. I do know I need to keep a regular routine, I do! But it's not that simple.

What drives me crazy are the thousands of really un-helpful tips that abound. When I was frantic with lack of sleep, which I'd like to point out is used as torture by war criminals, I asked a G.P for help and they actually printed off an information sheet from Google!! I can do that myself!! I do know all the sensible things one is meant to do. Another Doctor I saw told me not to drink any liquids two hours before bed, as needing to pee can wake you up, not to drink alcohol 4 hours before - see the recent study that was released earlier this week saying alcohol disrupts our sleep cycle. This Doctor also told me not to go to bed before midnight, rubbishing the rule I'd heard that the hours before midnight count for 2 after? I know to keep my bedroom a cool temperature, but not too cool, to try to unwind before bed, I've tried all the different sorts of herbal night remedies and made my room stink with Valerian. I've tried meditating, which I should try again as I so want to be Julia Roberts in EAT, PRAY, LOVE but my fail safe is usually the good old Audio Book.

I think at the moment Christmas and New Year, and all the fun they entail, maybe derailed my pattern? I've noticed many other migraineurs are having a tough January and sleep troubles too. So, basically I just wanted to moan. Last year I attended a fascinating talk hosted by The Migraine Trust at the EHMTIC conference on Sleep and Migraines by Alex Nesbitt (a specialist Registrar in Neurology and Research Fellow at a sleep centre). To be honest I"m too tired to summarise his talk now but read this brilliant article which will tell you lots of important and useful things about the relationship between migraines and sleep. For example, did you know there's even a 'sleep' headache, 'Hypnic Headache', that migraines are more likely to occur between 4am and 9am - and lots of other clever things our body's are designed to do at night.

Now if only I could get to sleep in the first place.....

p.s Tips & info below as usual - and more spelling & grammar mistakes than usual as I'M NOT SLEEPING!

Further Info & Advice:
http://www.bbc.co.uk/news/health-21147780
http://www.migrainetrust.org/research-article-sleep-and-migraine-reluctant-bedfellows-2012-14811
http://www.migrainetrust.org/factsheet-hypnic-headache-10893
http://www.mayoclinic.com/health/migraines/HE00004
http://www.achenet.org/resources/sleep_insomnia_and_migraine/

Botox Campaign For Chronic Migraineurs - Guest Blog Post!

Hello lovely peoples, today I shall be handing over to the fearless and feisty Maggie Austin. You may recognise Maggie from past posts such as 'WHAT DOES A MIGRAINE LOOK LIKE' - but today she's writing about Botox for Chronic Migraine patients and a campaign she's recently launched that needs all of our support! 

Over to you Maggie!

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Dear Readers.

I’m Maggie, I’m 24 and I go to Derby University. I’m studying psychology and I think I want to specialise in something to do with pain management and neurology. Wasn’t my original plan but I think my Chronic Migraines have changed my perception of what I want to do.

A self portrait of Maggie

And her kitten Ella Freud!

Botox – Commonly known as being used to look younger, plumper and kind of funny looking if you use too much.

I’m guessing at least some of you migrainures out there will know of its other use however. Botox is now an officially approved treatment for Chronic Migraines on the NHS. Of course this is subject to some very strict and also a bit ridiculous guidelines. Namely being, 15 headaches a month, 8 of which are migraines; this part is not ridiculous. It gets a bit stupid once you’ve actually started having the treatment, after 2 treatments 3 months apart you have to have improved by a third, but still meet those original criteria or you are no longer deemed as chronic and can, therefore, no longer qualify for the treatment.

I have all this yet to come.

I have been suffering with different variations of migraine for the last 7 years. In the last 2 years I have not gone a day without some form of headache/migraine. I have tried every treatment my doctor and a local neurologist could think of.

So I went to the, quite frankly, AMAZI NG National Migraine Centre – a wonderful charity that offers specialist help to all of us sufferers while merely asking for a donation. I spoke with one of the specialists there and explained the fact that everyone was out of ideas, and how difficult regular life had become, especially the fact that every time I saw someone who wasn’t my regular doctor I got accused of Medication Overuse Headaches (MOH). 

He was incredibly understanding and after some discussion he informed me that I don’t suffer from MOH and I am, in fact, just a Chronic Migraine sufferer. He suggested Botox, telling me that he believed in treating a problem at its source whenever possible. One of the most reassuring things about the whole conversation was him telling me that my problem is, in fact, fixable… not a word I ever expected to hear about my migraines.

Downside – it turns out it is actually easier to have surgery than to get Botox on the NHS. Not only are very few NHS doctors trained in how to do it for migraines (I’m opting to have mine at the National Migraine Centre), but you also first have to get your Primary Care Trust to actually approve the funding for it! NICE guidelines state that they have 18 weeks, but apparently they like to drag their heels, so the only way to get it in that period is to kick up a fuss.

Points at which Botox can be injected (but it does differ)

I personally am quite inclined to do that; they will have a very difficult time ignoring me. My concern is for those who aren’t quite as feisty as me, but still need this treatment. Hence why I am trying to stir up a bit of trouble to see if we can get people to hear that. I have already been in touch with my local MP – whom I have yet to hear back from, but I’m not surprised. I let them off over Christmas but now they'll have to put up with me all over again!

  I have also started an online petition to try and get someone to take notice of this issue, so help me get involved:

http://www.campaignengineroom.org.uk/botox-for-chronic-migraine-sufferers

The NHS seems to have a rather dismissive attitude towards us and we really need to change that (I sound like I’m rallying a protest or something! Anyone got any picket signs?!).

WHO’S WITH ME?!

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Go Maggie!!! I'm with you!!! I know that we all got quite over-excited once NICE said Botox would be available for Chronic Migraine patients on the NHS but, as you can see from the above, it's not quite as simple as it sounds. There are strict criteria to meet before you can even have round 1. So let's all sign this petition as I know several Chronic Migraineurs who have got their lives back thanks to Botox...

More information:

To book an appointment at The National Migraine Centre simply call: 020 7251 3322. A migraine specialist will work with you to tailor a treatment plan to meet your needs. A GP referral is not needed and payment is via donation as the Centre is a charity, most major Private Insurance Policies are accepted if seeing The Medical Director. 

Here is the Centre's fact sheet on Botox

http://www.migraineclinic.org.uk/wp-content/uploads/2012/03/Factsheet-Botox-12.1.122.pdf

The December News Letter (featuring an article on getting Botox on the NHS)

A Genetic Link Between Epilepsy And Migraine?

When describing migraine, especially to people who don't seem to understand how severe it can be, I often say: "It's a cousin of epilepsy."

I believe this analogy to be useful on many levels:

•  It get's people to take me and my condition seriously
•  It instantly conveys that migraine is a neurological condition over which I have no control
•  It helps explain the notion of migraine as episodic attacks which have triggers

My this is all rather serious for monday morning isn't it? Yes, you should probably imagine Dame Judi Dench is reading this out-loud to you. By the way, I don't make the comparison between epilepsy and migraine lightly. I have several close friends who suffer from severe epilepsy and I've seen how devastating and debilitating it can be. A girl I was at school with tragically died from a seizure, whilst at her home. She would have seizures at school and I vividly remember our maths teacher carrying her out of class once. So, please do not think I'm trivialising epilepsy or the struggle of those who live with it.

The reason I'm writing about this topic today is that clever Scientists from Columbia University have released results from a study which could finally prove a genetic link between migraine and epilepsy.

Dr. Melodie Winawer from Columbia University Medical Center in New York said "Our study is the first to confirm a shared genetic susceptibility to epilepsy and migraine" 

Image taken from http://www.electrocoremedical.com

It has long been known that migraine and epilepsy are comorbid. Indeed many migraineurs, myself included, take treatments that were primarily intended to treat epilepsy; known as neuro-modoulators or anti-convulsants. Topamax, Gabapentin, Valproate etc fall into this category. Likewise, The Gamacore devise (shown right) which I use to treat some of my right sided migraines stimulates the Vagus Nerve. Vagus Nerve stimulation has also been used to treat epilepsy.



There are also many other similarities, which are far too technical for me to really understand and explain but involve brain hyper-excitability, genetics, 4 stages of attacks etc etc.  And this study found that those with three or more close relatives with epilepsy were twice as likely to suffer migraine with aura.

This study is great news for sufferers as more targeted treatments can now be developed, and any greater understanding of both conditions is always beneficial. I'm also hoping that it might mean the general public will treat those of us with migraine with a bit more consideration. Migraine is the most common neurological disorder in the developed world. It's more prevalent than epilepsy, asthma and diabetes combined but receives far less funding. Isn't it time to re-address this balance?


Further Links/Info:
http://www.bbc.co.uk/news/health-20908903?
http://www.australasianscience.com.au/news/january-2013/genetic-link-between-epilepsy-and-migraine.html
http://www.eurekalert.org/pub_releases/2013-01/w-ait010313.php
http://www.ncbi.nlm.nih.gov/pubmed/14527480
http://www.migravent.com/blog/migraine-comorbidities/migraines-and-epilepsy-is-migralepsy-for-real/
http://migraine.com/blog/migraine-and-seizures/

MIGRAINEUR OF THE MONTH JANUARY 2013

Happy New Year one and all! I hope everyone had restful, migraine free Christmas and New Year's ?? I also hope that everyone has a set of migraine health resolutions? I'll explain what I mean about that in another exciting post. 

But for now, I'm very excited to present the formidable, feisty and tireless Suzanne as Miss January! I can't think of a better person to be the first Migraineur Of The Month 2013. Despite suffering from what she likes to call "the Prada of Migraines" (Basilar) Suzanne is determined to get the most out of life and also advocates for The Migraine Trust. 

Can you remember and describe your first migraine?   

Yes, it was the 18th May 2006 which will go on record as the worst day of my life. I woke up and had no feeling in my right-hand side, from my face down to my right leg; I could hardly stand up and my right arm felt like it was hanging off me. I realised after a few moments that I’d lost muscle control in my mouth and could not talk or swallow. Somehow I got to casualty and they whisked me straight through.  I could instantly tell that the Doctor thought I’d had a stroke; I also thought I’d had a stroke and when they asked me, “Do you usually talk like this?”, “Do you usually hold your head like that?” I was unable to reply other than in unintelligible mumbles.  The hospital didn’t know what it was, ‘something neurological’ and as soon as they were certain I hadn’t had a stroke and wasn’t in danger of having a stroke, they sent me home.  It was months before this attack was labeled as ‘basilar-type migraine’.

Best migraine top tip anyone’s ever given you?  

Regulate your blood sugar.  I’ve been doing this for a while now and it seems to be helping.  I eat small meals and snacks more often, so I am eating every three hours. It seems to be helping the ‘hangover’ after-effects of attacks.

Worst Trigger?  

Cadbury’s Dairy Milk –life is so cruel!

Favourite migraine comfort?  

It is now Coppella Apple Juice (or any apple juice which is not from concentrate).  A small glass when I feel a migraine is coming on might delay it, whilst a large glass after an attack seems to bring me out quicker. Until I learnt about blood sugar I would always crave fat Coke and a Kebab. 

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

That there is nothing wrong with me ‘you look so well!’  The worst assumption I’ve had during an attack is that I’m drunk because my speech slurs and I stumble around.  For a long time I didn’t want to go out because of this. 

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

Not giving up!  It would be so easy to lie in bed all day and feel sorry for myself.  But I have a life, I’ll be damn sure that I’m going to fight this migraine and I will WIN THIS. 

If you could be the Queen of England for a Year what would you do!? 

I would bring in a law that made it illegal to use flash photography at press conferences and major world events.  I miss so much of the news because my migraines are triggered by flashing lights.  Why can’t the press photographers have a separate photo call instead of click, click, click all the way through a speech or talk? 

  

What are your migraine hopes for 2013! 

That I will continue to fight this thing and move towards my goal of cycling the C2C from Whitehaven to Tynemouth – 140 miles over 2 days. 

Well thank you so much Suzanne for sharing some incredible top tips here. There's no doubt in my mind that you will beat this dreaded migraine and meet every goal you set for yourself. I also feel your pain re Dairy Milk....that used to be my favourite too, life is indeed not fair....sigh. Anyway, here's hoping 2013 brings you many migraine free days. 

  

Suzanne Collier works in book publishing and specialises in career guidance and redundancy help for publishers under the name http://www.bookcareers.com.  She writes, lectures, consults and sees private clients for career development.  Her personal website is http://www.suzannecollier.com.  She can be found on twitter @suzannecollier