Saturday, 29 September 2012

Guest Blog Post!: How The Spring TMS Device Stops My Migraine Attacks.


When I first read about a portable magnetic machine that could supposedly "cure" migraines, I was naturally sceptical. But as the research trials continued it appeared that this device, whatever it was, could be quite promising. I wanted to know more. So when I bumped into one Andy Bloor at the EHMTIC conference last weekend, and he mentioned he was using it, I asked if he'd write a guest blog post about his experience with this fabled machine. OK, I stalked the poor guy - my previous life as Head Hunter comes in handy when tracking people down.... Andy, I apologise but I'm sure you'll all agree it was worth it. Over to Andy. 

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Q – what’s the size of the Oxford English Dictionary, weighs as much, comes in a neat carry case, but may possibly stop migraines in their tracks?

A – the Trans-Cranial Magnetic Stimulation (TMS) device.

Migraines have blighted my life for about 17-19 years now.  My first attack was probably when I was a new teacher.  I was sitting in front of my class when I suddenly realised I felt peculiar.  I also realised that I simply couldn’t get off the stool I was sitting on  – what with a simple 4 foot stool suddenly becoming like the ledge on a 100 foot building....

I asked one of the class to get my colleague next door and she helped me down and I went, hugging the wall, down to the staffroom.  A colleague and friend saw me in the staffroom and said "That’s a migraine." (Oh, if only I’d listened to you at the time Jo!) With this information I went to my GP… and came out with a diagnosis of Labyrinthitis (an inflammation of the inner ear).  After all, why diagnose migraine: there was no headache.

About 6 years later I had my first full blown ‘headache with vomiting’ attack: it was like the film 'The Matrix', when Neo comes out of the matrix and seems disorientated, vomits and then is fine. "He’s gonna blow; he’s gonna blow" they cry: and he does.   I had a pounding headache, vomited and a few hours later felt better.  This time my (now different) GP diagnosed migraines.  Thus started the long journey that took me from GP to neurologist and finally to the Princess Margaret Migraine Clinic in Charing Cross Hospital, London.

Then a whole range of drugs were tried.  The most effective seems to be Lamotrigine along with co-codamol and Buclizine (you know… the little pink one!) as an acute medication.  Of course, with co-codamol came the concern that I may start to get chronic pain migraines.  This became particularly of concern when the migraines started to get more frequent.

About a year ago I was asked to trial a device that it was hoped would stop my migraines.  It was explained to me that it was an acute treatment so only had to be used when the migraine descended.  My first reaction was, I’m sure, similar to many migraineurs: if it works I’ll try it.  Eating hedgehogs; dancing naked at the full moon; I’ll try anything if it ameliorates or even stops this blight on my life.

So I tried it.  And it works.  You need to get to it early enough and the initial dose isn’t always enough.  But for me, it works.  You charge it up (and it has to be at room temperature or the thing throws a hissy fit and you have to wait, so never leave it in the car overnight!), then place it at the back of your head and ‘fire’, by pulling two sliders on the device.  It emits a ‘clunk’ and in doing so administers an electro-magnic pulse into your brain.  This pulse is designed to affect the parts of the brain that are sensitised by migraines.  On my prescription, if after the first two doses things don’t get better, then you administer one more dose each 15 minutes until the migraine abates. 

This isn't Andy! Andy is a boy.  This is a picture from the Spring TMS Website (details below)
Now before you all go rushing to your GP, there are a few things to consider.  Firstly, it’s on clinical trial so probably won’t be widely available for a while.  Secondly, it may not work for you.  We all know that some interventions, pharmaceutical or otherwise work for some and not others.  Each migraine is different for each person; so is the most effective treatment.

You can finds out more information about the TMS device on the e-neura website  site at: http://springtms.com/index.html Also, there is some background information at the excellent Migraine Trust website at http://www.migrainetrust.org/news-latest-news-on-transcranial-magnetic-stimulation-device-15720

Andy Bloor is an academic in an Univeristy in the South East of England. He has had migraine for around 17-19 years. He is currently studying for his PhD. 

You can find your nearest Migraine Clinic via the Migraine Trust Website
Further information on the Spring TMS is available via Migraine Action

Past Posts You Might Enjoy:

Coming up!
Topamax Trials & Tribulations Part II: Is it working?
My Bra Gave Me A Migraine




Friday, 21 September 2012

Dating And Migraine: A Letter To M


Dear M,

My therapist, Sybille, says I should write you a letter venting my frustration. Apparently it’s healthy to just let all your emotions out. Well that’s what Sybille thinks (who by the way is imaginary, being British I couldn’t possibly talk about my feelings to a stranger.) So here goes.

To get to the point, you’re completely ruining my love life. You make it almost impossible for me to date! Now you and I, dearest M, go way back so do I need to remind you of the time you so rudely interrupted my date with Bernard? (Name changed for legal reasons.) Bernard and I were engaging in some heavy petting, shall we say, when all of a sudden, like an unwanted Aunt, you decided to show up. But this time your arrival was more unusual, and took a surprising avenue. 

I was kissing Bernard when I noticed something sticky on his face. Being polite, in between kisses I mumble:  

“Um Bernard," [kiss kiss]  "I’m terrible sorry but I think your nose is running.” He ignored me and kept on kissing, but the sticky substance was coming thick and fast. With horror I realized it was blood!

“Aurgh! Bernard! You’re having a nosebleed! Disgusting!” Bernard sat bolt up right and switched on the light. We screamed simultaneously, both of our faces smeared with blood. And yes, dear M, it was from my nose that blood was gushing forth. For earlier that day I had taken two of my nasal spray meds to keep you at bay! I think 10 years of these nasal sprays are taking their toll. Let me tell you dear M, nothing kills the mood like having a nose bleed on a boys face! You will not be surprised to hear he didn’t call me the next day.

And let’s not forget the date you so spectacularly ruined with the boy I REALLY liked. Yes, he was the one I thought I’d actually be able to date for more than two weeks. I had on my little black dress and red lacy Victoria’s Secret underwear all ready to go. The restaurant was perfect, he was perfect, it was going to be the most romantic night ever. Now I know I’m partly to blame, I decided not to bring my bag to dinner (have you noticed in Romantic Comedies girls never seems to carry handbags on dates?) I wanted to be all-carefree; Sex And The City. But oh no, you thought it would be so funny to bash me in the head with a sledgehammer right before our entrée arrived and I was powerless to stop you. I’d left my arsenal of defense at home, in my handbag. I tried to cover one side of my face with my hand, hoping handsome boy wouldn’t notice my eyeball was practically bleeding. But in the middle of one of the most expensive restaurants in London, I had to almost be carried out, taken home in a taxi and undressed like a child. Let me tell you – it was not exactly how I’d imaged he’d be taking off my clothes. He even had to help me take out my contact lenses!


For once, I’d like to go on a romantic picnic with a cute guy and not worry about eating the wrong foods, agree to play tennis, say yes to impromptu trips to Lego Land, be spontaneous and not have my handbag rattle like a mobile pharmacy. And do I bring you up in casual conversation on first dates? Or do I try to hide you away like a shameful drunken Aunt? And how do I begin to explain that you’re invisible to everyone but me - and not sound delusional?

Well, Sybille says as it’s Global YearAgainst The Headache, enough is enough. You know what I realized? You’re the longest relationship I’ve ever had! So, I’m afraid I’m going to involuntarily euthanize you. It might take some time, I might not be able to completely kill you right away, maybe I’ll just put you in a deep coma, but make no mistake. I’m in control now. You see I realized the key to keeping you at bay is getting educated, I’ve been doing a lot of reading and research, pestering all sorts of different Doctors and I think I’ve finally discovered your weak spot. Because I want a love life, I want to go on dates. I want to go on romantic weekends away and not have to worry about taking Ice packs, Heat Patches, TENS Units, Triptans, Rescue Medications and anti spasm pills. They’re not very sexy and make me look like a drug addict. So dear M, Sybille thought it only fair I give you some warning.

Things are going to change. I’m joining Match.Com. 

Love

Victoria 
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p.s If pesky migraines are ruining your dating life do something about it - don't suffer in silence.  There is help and hope out there. Useful links can be found top right! 

Other Blog Posts You Might Enjoy:

Thursday, 20 September 2012

Smile NICEly - Lights! Camera! Action! New Guidelines lead to media frenzy.

"Try not to make too much noise, Victoria, we're live on air."

Oh my god, I'm breathing too loudly, I'm breathing too loudly. I'm sitting right next to the new Director General of the BBC, who is currently being grilled by John Humphrys, and I think I need to sneeze. Suddenly it's Thought For The Day (by the way Dr Giles Fraser I'd like my favourite Biro back) and then Jim Naughtie is saying something about migraine sufferer Victoria Saxton... I realise that's me.

You can hear my rather brief appearance on The Today Programme on BBC Radio 4 here (1hr 53.) Can I just say I'm most proud of the fact that I didn't swear, nor did I burst into song at any point.

A grand BBC Mercedes swept me home but the second I stepped foot indoors, my phone began to ring with other media enquiries and didn't stop all day. I did two radio interviews and two TV interviews, including the below, and I have more lined up. I've realised TV is not the media for me, I'm far too distracted by all the bright lights and cameras. I found it near impossible not to look directly into the camera - and once again suppress that urge to burst into song. I can't sing by the way so I don't know where this urge comes from.




My migraine buddy Fran had a similar day, making star appearances on BBC News and Channel 5 News. We're thinking of starting an agency called Migraine Media. Any takers?

Why this sudden interest in Headache and Migraine sufferers? Well yesterday NICE released their new Headache Diagnosis & Management Guidelines and the media decided to latch onto the fact they mention Medication Overuse Headache (MOH). This is what Fran and I were asked to talk about, we've both suffered with it and had to come off all pain medication and Triptans (acute migraine medication.) Taking too much of either can cause MOH and aggravate exciting migraine. I told each Producer I talked to that there are an estimated 190,000 migraine attacks each day in the UK, that absenteeism from migraine costs about £2.25 billion, so these guidelines are a massive deal for many other reasons. They were stunned and fascinated but it was clear that the only angle the media wanted to focus on was this issue of MOH. I also slightly ruined their stories with the fact that I was given nerve blocks and a tapered dose of steroids to get me through the withdrawal periods, rather than going completely cold turkey. MOH is of huge importance, so I'm very glad it got so much attention yesterday, I'd just like the rest of the guidelines and their impact to be debated too.

In the longer interview I did for the BBC World Service, Impact Programme, that wasn't shown in the UK, and on BBC Radio London Drive Time (minute 16.00), I did try to get across that MOH is only one aspect of life with migraine. We need to be taught how to live with and understand this very individual condition. Going cold turkey is by no means an easy fix (in fact it's terrifying and gruelling) - and like me - if facts aren't properly explained after going cold turkey you can just slip back into MOH again if you don't know about triggers, prevention or pain management. Dr Giles Elrington, the Medical Director (and Consultant Neurologist) of the National Migraine Centre gave some brilliant explanations of MOH and Migraine on the Jeremy Vine show (min 38). As many of you know the National Migraine Centre is where I first learnt to really live with migraine from a preventative angle. Wendy Thomas, Chief Executive of the Migraine Trust, also talked a little more about Migraine Prevention on Woman's Hour on BBC Radio 4.  (min 10/58)

       Next week I'll talk about the NICE Guidelines in more detail and what this will actually mean for migraine sufferers. I know a few people are worried that all their triptans and pain killers will be taken away - but if you read the guidelines I don't believe this will actually be the case. It would, however, be interesting to get an expert opinion on the guidelines to compare to the BASH guidelines.

p.s I'll also talk about how I avoided getting a migraine myself during this exciting but hectic day! It may have involved opening my bag during a massive blog sugar drop to find Mum had packed a sandwich, coke and crisps.... there are some perks to living at home aged 32! Thanks Mum.... 

Links & further info:
Migraine Trust Research Article on managing medical withdrawal
Fran on BBC News
BBC Radio London - Drive Time Interview (minute 16.00) Followed by an interesting segment from the Director of Bupa Healthcare.
BBC Radio 4 - The Today Programme - Also featuring Dr M Underwood (Chair of the Nice Guidelines) (1hr 53)
ITV News Programme about Over Use Of Painkillers 
NICE Guidelines

If you think you may be suffering from MOH, persistent headaches or migraines get thee to the National Migraine Centre!



Blog Posts You Might Enjoy:
How I (nearly) Made A Trainee GP Cry
What Does A Migraine Look Like?
Getting Rich & Skinny Off Topamax!

Thursday, 13 September 2012

The Migraine Trust User Group – Your Voice Represented


A User Group – What is it?

When I first read about a User Group I had no idea what it meant. To be completely honest my over active imagination flashed up an image of heroine addicts talking about their problems. Thus I was a little confused as to why the mighty Migraine Trust had created one. This shows, I think, how naive I was then in the ways of the charity world. It turns out that most major charities have User Groups and they’re not for ‘users’ in the sense I had imagined….

The Migraine Trust User Group was the brainchild of Tony Bloomfield, the former Head of Fundraising and Communication. It has many duties but put simply it is a group of migraineurs, or those who care for someone with migraine. The Migraine Trust is the UK’s largest Migraine Charity and this User Group will represent the very people it aims to help.

The duties of those on the User Group range from providing advice to The Migraine Trust regarding the needs of migraine sufferers and their families in the UK; Reviewing current service provision for migraine sufferers by the NHS, private clinics and The Migraine Trust; being consulted on publications, policy positions and the charity’s proposed activity to providing advice and guidance on relevant issues.

Membership is on a rolling, 3-year basis and there are to be 3 meetings a year. At present two Migraine Trust staff members lead the meeting and update the Group on the Trust’s activities. It is hoped a member of the Board of Trustees will be present at most of the meetings, and a member of the User Group will represent the Group at Board of Trustees meetings.

Why am I telling you about this?
Partly because I’m a member. I turned up to the second meeting last March and found a room full of migraineurs of various types, ages and background. People had travelled from all across the UK including Scotland, Northern Ireland and Newcastle. At present there are 17 members. Apart from anything else I can not tell you how fabulous it felt to be in a room where I was not a freak, not the odd one out; where everyone understood that strong perfumes and bright lights were a no go.  

The real reason I’m telling you is because I want your views on the issues we will be discussing at the next meeting, this Saturday September 15th.  The User Group has a very real opportunity to “inform the future direction of travel for the charity” (as eloquently put by a fellow User Group Member). Thus I feel it is important that I represent YOU, migrainuers.



So – here are the items on the agenda. I want to know what you think. What and how do you think The Migraine Trust could and should be doing to help YOU in relation to these issues?

  • GP’s and Migraine. What are your views and experiences of GP’s services as migraine patients?
  • Employment and Support Allowance (ESA) and the Work Capability Assessment (WCA). Have you been through the WCA as a migraineur? How did you find the experience?
  •  The Migraine Trust in Parliament and their involvement in the All-Party Parliamentary Group on Primary Headache Disorders.  More will be discussed in the meeting about the involvement in the group, what it is and how The Migraine Trust represent migraine sufferers.

ARE THERE ANY OTHER PRESSING TOPICS FOR THIS MEETING that you, dear readers, would like me to raise? A lot of this meeting will be spent with us being brought up to date with the Trust's recent activities, and learning more about key offerings such as the Information and Enquiry Service. However, we can raise any topics so do let me know your opinions on the 3 topics above, and if there are any other issues you’d like us to talk about. 

If you don’t feel comfortable leaving comments publicly, or want to know more about the Migraine Trust User Group, please contact Hannah Verghese (Advocacy and Policy Manager) hverghese@migrainetrust.org. 

To learn more about The Migraine Trust check out their fabulous website:


Tuesday, 11 September 2012

MIGRAINE COMFORT TIPS & RITUALS


MIGRAINE COMFORT TIPS & RITUALS

A friend once declared that everyone has an exact morning ritual, which they follow religiously. Not wanting to be thought so predictable and dull I vehemently protested this statement. The friend then asked me to describe, exactly, what I had for breakfast each morning and how I prepared it. I sadly realised he was right. Whilst your tea is brewing for 3 minutes, it is incredibly important that you put the marmite on your toast in tiny blobs and then join it up, otherwise it’s just too thick and doesn’t taste good and ….

I also realised, when I started to get a migraine the other day, that I have a very carefully prepared migraine ritual. I have tried and tested practices, including comfort foods and drinks that I have on hand, for when a migraine starts. If you don’t have a migraine ritual you need to have one, it needs to be ingrained, you need to be able to get your comfort aids to hand in a semi-comatosed state. I can reach for some of the items listed below in the dark, with my eyes shut, without leaving bed (pretty clever of me I know.)

So here are my migraine comfort tips and ritual (the order can vary depending on the type and level of pain, which doesn’t make it a very strict ritual and slightly ruins my metaphor but…) Everyone’s migraines are different, so your ritual and comfort tips will be different to mine but I hope you’ll find something useful below.

Just to be clear this is for when a migraine attack has started and you’ve taken your prescribed medications, which would obviously be STEP ONE. Watch these series of video’s on how to treat an attack by the National Migraine Centre.

So, I’ve taken my medications (they may or may not be working) and I take myself off to bed, or I may already be in bed…

THE RITUAL BEGINS…

1. HEAT
Yes, this may sound strange but I often like to put a hot water bottle on my neck/back/shoulder. Now to maximize the life of your hot water bottle you must invest in a Hot Water Bottle Cover. You must. It will double the heat life of your hot water bottle (this is also a good idea for a Christmas/birthday present for us migraineurs – p.s I like cashmere ones best, just sayin’. The White Company & Brora do lovely ones.)

If I can’t muster the energy to get to the Kitchen to make a hot water bottle I slap on a Heat Patch. These are also useful if you are out and about, or at work etc. You can apply directly to skin. I tend to use Cura Heat or Therma Care. Surgical Tape can help them stay put. At one point I was even a proper granny and had a heated blanket but found I couldn’t mould it to the right position, plus I was convinced it would burst into flames and kill me. Thus it wasn’t very relaxing.

I, therefore, suggest you invest in a Kitten. Kittens are, essentially, never ending, vibrating, hot water bottles. Very good for the environment. Very soothing.


Chipster - my eco friendly hot water bottle & migraine buddy
A more recent snap of Chipster





















2. COLD/ICE PACK
While I’m making my hot water bottle I’ll be wrapping up my cold Gel Pack.

Most migranuers reach for an Ice/ Cold Pack first. Ice is one of nature’s greatest anti-inflammatory treatments and the extreme cold can simply distract from the pain. I like to have a gel-pack (wrapped up in a dish cloth) on my forehead, or wherever on my head the pain is worse. Sometimes, I wrap it around the back of my neck. I really need to invest in one of those fancy head bands that you can slip a gel-pack in to. Such as this "Medi-Temp Pad"

You can also buy instant ice packs in most Pharmacies. Hospitals now routinely use these. These are good for having at work/in your bag etc.


TOP TIP: Have TWO gel-packs in your freezer to rotate. I use these blue ones, as you can bend them to desired shape as they seem to stay cold longest.




3. TENS UNIT
I then stick on my TENS unit. I adore my TENS unit, it will not stop a migraine once its started but it can, sometimes, greatly dull and distract from the pain. I’ve written more extensively here about how to use and where to buy one.

4. FOOD
Obviously this stage of the ritual depends on what time of day/night the migraine hits.

During a migraine the stomach essentially goes on strike. This is known as gastrostasis. I’m very lucky in that I don’t vomit with my migraines but I do sometimes feel sick and, therefore, often don’t feel hungry. But I know I’ll fare much better if I do eat a little something plus I’ll avoid blood sugar drops (and p.s vomiting is far less painful with something in your stomach than retching on an empty one.)  Often I just go with what I feel like. Usually something simple or, quite often, starchy carbohydrate – e.g a plate of chips. Mum craves a glass of milk and ready salted crisps! But as I’m lactose intolerant and suffer with severe stomach spasms after attacks, I try to eat foods that won't aggravate this.

If you’re alone, or might be alone, during an attack it’s prudent to have some ready meals frozen, or food you know you’ll tolerate or crave during a migraine that take minimal effort to prepare. When alone I can barely gather energy to walk to the bathroom so if I do feel like eating the idea of preparing a meal overwhelms me – so a healthy microwave meal is ideal – or a jacket potato is perfect.

Tip: A blood sugar level drop is the last thing we need on top of a migraine – and it could tip us into another migraine if we’re in the Postdrome (hangover) stage!



5. DRINK

Coca-Cola – for some this is a tonic for some it is a migraine trigger. Personally, I find a cold can of full fat Coke to be a miracle in a can. Caffeine is a natural pain killer but also aids absorption of other medications. As noted above the stomach goes on strike so getting medication into the system fast can be hard, plus the sugar in a full fat fizzy drink will raise blood sugar levels (a well known migraine trigger). Note: Do not have a diet fizzy drink (Aspartame can trigger migraines – and this will also negate the benefit of the sugar etc.)

Coca-Cola is often the only thing I feel like drinking during an attack. I swear that a can of Coke has once stopped me from getting a migraine.

Top Tip: A couple of soluble Asprin, dissolved in full fat Coke is a good first line of defense against an oncoming migraine. I was taught this trick at the National Migraine Centre (they suggested a full fat fizzy drink, accompanied by the anti-emitic Domperidone + dissolvable Asprin [or whichever painkiller works best for you])


There is a school of thought that caffeine is bad for migraineurs, being a natural pain killer it could, over time, lead to MOH. Caffeine is also a well-known migraine trigger. Bizarrely I can’t stand drinking straight coffee. I am trying to cut down the number of full fat Coke’s I drink (mainly because I don’t want my teeth to rot) so I try to save them for migraine days.

Other drinks I sometimes crave and that help with nausea are: Ginger Ale, Cranberry Juice and Sprite (not altogether!) I also have a huge jug of water on hand as well – don’t get dehydrated!


6. PILLOW FIGHT
Finding the right pillow has been the bane of my life. During a migraine some people suffer from allodynia which means the skin becomes extra sensitive to touch. I’m lucky in that I don’t get this too badly, but I have actually spent whole nights lying on the floor with yoga blocks under my head as that seemed to be the only comfortable position. As a neck injury is my main trigger the right neck support at night, and during a migraine, is vital. Too soft a pillow gives one neck sprain, too hard a pillow and you wake up not being able to move your neck. I thought I had the answer with the Tempur Traditional Pillow but they’ve turned it into a brick. I’m not above taking out the stuffing of pillows in hotels by the way…. But generally synthetic pillows are a happy medium, have a lot of them, so you can arrange them around you in any way you want.

7. NECK BRACE
Again, this is very particular to me because of the above mentioned neck injury. My neck frequently goes into spasm so this often helps but I also find during a migraine having this support, taking the weight off my head as it were, helps a little too.

8. EYE MASK/PASHMINA
Aversion to light, photophobia, is a well known migraine symptom. I have an old Virgin Atlantic airlines mask I pop on, but sometimes the straps are, to my sensitive pounding head, too painful. Instead, I lay my pink pashmina over my eyes. I should probably invest in a nice, comfy, eye mask to keep out the light. (See step 2, you can get cold eye masks too.)

9. LAVENDER OIL/CANDLES
I become incredibly sensitive to smells before/during and after a migraine. On my bedside table I have some lavender oil that I can pour into a dish which gives a lovely scent, this helps with feelings of nausea and can drown out other smells if you’re living with friends or travelling. I also have lavender candles dotted around, though these present obvious fire hazards… especially if you’re going to be in bed for 3 days, alone… I’ve tried other scents but always come back to lavender.

10. AUDIO BOOKS
So, I’ve got the Ice packs, hot water bottles, TENS unit, drinks, food all ready and, by the way, this has probably taken about two minutes, if that. I then press play. Now I can relax.

Audio books have literally saved my life, my soul. I will shortly be devoting a whole post to the subtle art of finding the right audio book to listen to when I have a migraine. I have never mastered meditation (even after reading "Eat, Pray, Love"), hypnotherapy just sends me straight to sleep and I’m basically in too much pain during a migraine to try it. I can’t bear to listen to music and most sounds actually hurt but I crave an audio book. This might not make sense, but in a way it's my meditation, I know I can switch off, and swim into the world of the usually dulcet tones of the reader. The aim, when a migraine hits, is to hopefully get to sleep as soon as possible, and audio books help me – as long as you pick the right one. This is why the story can’t be too exciting, scary or bizarre. They need to be comforting but likewise they can’t be too boring. My top tips: Agatha Christie is the queen – gentle yet intreaguing. Classics are good too, e.g Jane Austen, Charles Dickens. Alexander McCall Smith's "No1 Ladies Detective Agency" series are perfect for long migraines, again a gentle listen. (Comedy biographies are best for migraine hangovers – because you’ll want to stay awake to listen.) More on this to follow...


I use the Audible App on my iPad – which has a good ‘snooze’ feature where you can set the time limit (I sign up every couple of months to their membership scheme then unsubscribe to take advantage of cheaper rates!) Other sources of audio material is the mighty BBC Radio 4, this has the advantage of being free – but most shows are only 30-45 mins. I need something that is going to see me through a longer period, which is partly why meditation and music don’t satisfy! Libravox offers free downloads, volunteers read out audio books so the quality is very mixed.



 So that's my ritual - as I said it really takes no time at all but I've got it down to a fine art.

I'd love to hear from you. What are your migraine rituals? What brings you comfort during an attack?

Other posts you might find useful:

Coming up:
The Migraine Trust User Group: Have your say
The Truth About Elvis Presley's Death!
Topamax Part II

Friday, 7 September 2012

Migraine Meme - 30 Things About Migraine You May Not Know

Migraine Awareness Week is drawing to a close and I think I will have to declare this Migraine Awareness Month in order to get through all the posts I had planned. So next week I'll start with Migraine Comfort Tips & Rituals! If you're a new reader, welcome to the world of Migraine Monologues, I look forward to hearing from you.

30 Things About My Migraine You May Not Know

Below is a 'meme' I filled in from the American National Invisible Chronic Illness Awareness Week Website, which starts on September 10th. It was much harder to do than I thought. So there.  

1. The illness I live with is: Migraine

2.  I was diagnosed with it in the year: 2001 (I think)

3. But I had symptoms since: 1999 (June to be precise)

4. The biggest adjustment I’ve had to make is: accepting that I have a chronic illness. I'm still not sure I have. 

5. Most people assume: I'm a weaklingly, a hypochondriac (& quite often that I'm Sophie Ellis-Bexter!) 

6. The hardest part about mornings are: waking up to find there's a dagger in the back of my head, i.e the migraine from last night hasn't left or a new one has arrived. 

7. My favorite medical TV show is: Used to be E.R, guilty pleasure was early years Grey's Anatomy & House, especially when I realised it was Sherlock Holmes in a hospital. (I quite like medical TV shows. I'm quite good at diagnosing the patients now.) p.s If you're a TV Producer you really should hire me to write for your show....

8. A gadget I couldn’t live without is: my iPad - because it enables me to listen to Audio Books when I can't sleep (see below.) Audio Books have saved my life.  

9. The hardest part about nights are: Not being able to sleep due to pain, or not being able to sleep because I've been asleep all day with a migraine and now my sleep pattern will be a mess and this will probably trigger some more migraines.....sigh.

10. Each day I take 4 pills & vitamins. (No comments, please - this amounts varies, it was once 8)

11. Regarding alternative treatments I: think you should try whatever you can to bring you comfort! I've tried acupuncture, reflexology, craniosacral therapy, massage, hypnotherapy & every vitamin and mineral supplement you can name. None has really helped me long term, though I'm permanently plugged into my TENS Unit and Physiotherapy has made the biggest difference to my pain levels and number of migraines.

12. If I had to choose between an invisible illness or visible I would choose: an invisible one. Although one of the hardest aspects of living with migraine is that it is largely 'invisible' at least I can hide it when I want to. I can't imagine what it would be like not to have that option. 

13. Regarding working and career: Without your health you can't have a career. Plus life is too short to do something you hate every day, especially when migraine steals so much time anyway. Having had migraines my whole adult life my career has slightly veered off track but luckily being a Writer time is on my side. 

14. People would be surprised to know: writing this made me cry.  

15. The hardest thing to accept about my new reality has been: there isn't a pill to make it all go away. That the head pain is just one aspect of migraine. That my Mum is probably the only person who completely and utterly understands. 

16. Something I never thought I could do with my illness that I did was: be patient. I'm not a patient person and weirdly migraines have forced me to be. Sometimes you just have to wait them out. 

17. The commercials about my illness: don't really exist in the UK. There are the odd ones for pain killers that mention migraines in passing but they're so useless I'm not counting them! Why aren't there more realistic TV commercials for migraine? I'm going to write one...

18. Something I really miss doing since I was diagnosed is: playing Tennis! Don't laugh. 

19. It was really hard to have to give up: Doing whatever I wanted, whenever I wanted. Also dairy. Milkshakes are a food group. 

20. A new hobby I have taken up since my diagnosis is: blogging! Hello Migraine Monologues.

21. If I could have one day of feeling normal again I would: not do any of my physio exercises first thing and last thing at night (without which I get a migraine) I'd play Tennis, have a milk shake, Windsurf and Waterski (my how sporty this day is!) write for hours in front of my computer (a trigger) get on an international flight to NYC (this is obviously a magical extra long special day) and party with my friends and not worry about alcohol/blood sugar/sleep triggers of any sort! But most importantly I'd wake up the next day migraine free. I wouldn't pay the price for my magical day. 

22. My illness has taught me: that I'm a pretty damn tough. We migraineurs cope with a lot of pain, a lot of the time. 

23. Want to know a secret? One thing people say that gets under my skin is: "are you better yet?" There is no cure for migraine. I will have them for the rest of my life, even though I fully intend to beat them to a pulp and eliminate all my triggers so I don't get attacks often. There is no cure. Yet. 

24. But I love it when people: ask how I'm doing today and don't dismiss me as a neurotic hypochondriac. Can you tell I'm a bit paranoid about being thought a neurotic hypochondriac?  

25. My favorite motto, scripture, quote that gets me through tough times is: "If you can keep your head when all about you are losing theirs... ". "You've just got to be braver than other people." (Mummy Saxton) "You are going to get a job one day and not die alone." (my subconscious.)

26. When someone is diagnosed I’d like to tell them: You are NOT alone. There is so much that can be done so don't you dare give up hope, keep fighting and learn as much as you can about YOUR migraine. I also tell them to read my blog, obviously. 

27. Something that has surprised me about living with an illness is: that it hasn't gone away. My migraines came on so suddenly in June 1999 I simply assumed they'd  disappear in a similar manner. 

28. The nicest thing someone did for me when I wasn’t feeling well was: read out loud to me. When I have a three day mega migraine my Dad comes and reads to me. It's a very special, lovely act. 

29. I’m involved with Invisible Illness Week because: I have an invisible illness and I had to fight for the right treatment from Doctors because there is not nearly enough education and research done into this disabling neurological condition. 

30. The fact that you read this list makes me feel: a bit embarrassed but rather grateful. Gush. 

Why don't you have a go at filling in the Meme? I can post it here, or you can send it to friends and family who might not understand what living with migraine is really like. 

Here is the fabulous Skulls and Ponies Meme

Migraine Awareness Week
2-8th September 2012

Useful Links:

The Migraine Trust                                                                 National Migraine Centre


Thursday, 6 September 2012

What Does A Migraine Look like?


In the previous post I asked a group of migraine sufferers to describe what a migraine feels like. I then asked this same group if they'd be willing to take a photo of themselves during a migraine in order to demonstrate what a migraine 'looks' like. They bravely agreed. As I discovered, not only is this a rather humiliating prospect but technically very tricky! I've noted before that migraine is generally considered to be an invisible illness, and those living with chronic pain become adept at masking it. But I'm pretty sure if you saw anyone in the throws of an acute migraine you'd know it, there would be visible signs aplenty. Indeed The World Health Organisation (WHO) ranks a severe migraine attack as equally disabling as quadriplegia.


Note the slightly swollen/droopy left eye and puffy face




Annie, aged 43, Chronic with Basilar & Vestibular Migraine.
Migraines commenced at 12 years old.




"Some days I find walking more than a few meters impossible, 
I am so exhausted by the pain. "




Maggie Austin, aged 24, Chronic Migraine Variant Without Aura. First migraine 7 years ago.

Maggie was rushed to hospital this weekend due to a severe migraine, she took this picture there! 










Fran (aka Skulls and Ponies), aged 28, Migraine sufferer for 8 years. 
Her boyfriend, Tom, kindly took this picture on Tuesday! 










"It feels like my brain is expanding, there is so much pressure on my skull."                       


Fiona Russell, aged 31, 8 years as a migraine sufferer.



Victoria Saxton (me) 31, Chronic & Episodic Migraine without Aura (& depending which Dr I'm talking to Cervicogenic headaches.) 13 years since first Migraine (also suffered from Post Traumatic Headaches & Vestibular Migraines in the past.)



I tried to take series of photos of myself taking a Zomig Nasal spray (the little blue thing I'm putting up my nose!) when I had a right sided migraine - mine are usually left sided. I think you can just see my right eye looks slightly bruised/dark shadows underneath....


Well - that was embarrassing but hopefully enlightening for all. Now if we don't get nominated for a ELLE Magazine or GMTV Live Make-Over prize or something I'll be stunned, as none of us are wearing make-up and I could certainly do with a hair cut, plus it's my Birthday next week.... 

But, to prove that migraineurs are super hard survivours, not the anti-social, agoraphobic spinsters that most people associate with the word 'migraine', check out the below. Would you recognise us? 





Migraine Awareness Week - How are you raising awareness? Find out what I have planned.
(2-7th September 2012) 

Coming up:  30 Things you didn't know about my Invisible illness
Migraine Rituals and Top Tips
The Truth about Elvis Presley's Death! 

Useful Sources Of Information:

The Migraine Trust                                                                   The National Migraine Centre


                                                                         
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