Monday, 27 February 2012

Migrainism Part II & How I made a Trainee GP (nearly) Cry:


In Migrainism Part I we learnt that it is wrong to conjure up automatically the image of a menopausal spinster knitting mittens for her 12 cats when someone mentions the word migraine. It is wrong to assume that they (the migraineur, not the cats) are a dull, anti-social hypochondriac. I wish I was a hypochondriac (and yes I’ve been called one), as I’m pretty sure it would be a lot less painful.

So the biggest misconception I would like to dispel is that migraines are a psychological disorder. They’re not! You see a NEUROLOGIST when you have migraine, not a psychiatrist or a counselor. Migraines involve complex neural chemical and vascular changes, in the brain and - cue Elgar’s Cello Concerto played by Jacqueline du Pré to heighten emotional intensity - it actually upsets me that I still feel compelled to defend this point to friends. Why is it that if you have a headache, especially a migraine, people think you’re highly neurotic? Maybe I’m overly sensitive on this point but I am not depressed. Yes, stress can trigger migraines for some people. Yes, there are studies that suggest people with migraines are more prone to depression. Yes, I get blue now and then, I think I have reason to do so, but I do not have a depressive personality. Really I don’t. And this has actually been a blessing and a curse in relation to the treatment I have received.

In 2005 I saw a supposed pain specialist, not a migraine specialist, and he wrote TWO letters to the group of doctors I was consulting saying: “Miss Saxton always appears well dressed, polite, smiling and shows no anger at her condition. I find this surprising. I therefore suggest her condition is psychological”!!!! I’m sorry that my good manners and impeccable dress sense stopped you, Mr Pain Specialist, from diagnosing chronic migraine, damaged nerves and a spine fracture!!

So always remember to be rude and dress like a homeless person when going to the doctor! Anyway, I shall talk about this special doctor, who is a big offender of migrainism, in another blog.

With the above in mind you will now appreciate why I (nearly) made a trainee GP cry. 

The Trainee GP


The other week, when I arrived at my local GP surgery the receptionist asked if I minded seeing a trainee GP before seeing my actual GP. Oh, I did not mind at all. It would only take 5 minutes, she said. The receptionist led me into the treatment room and immediately I saw my chance to educate this poor, sweaty, naïf trainee. In fact, I saw my chance to even the playing fields with all the patronizing doctors I had ever seen. I could get this one while he was young. He looked about 13 and had a limp handshake. I decided to take charge.

“Hello, do sit down” I kindly instructed trainee “Now do you have a pen and paper? You’re going to need to make notes”. He looked like Bambi caught on the M25 in rush hour. I can be quite scary and bossy when I decide to be.

“Um…um” he tried to stutter, “I think I’m meant to ask why you’re here today?”

“That’s not important young man. I’ll present you with my full case history in a moment but first I’m going to educate you about something called migraine – and if you really have what it takes to be a GP, it will be the most common neurological condition you will see. Now am I right in assuming you weren’t properly taught about migraines at medical school? Of course you weren’t! So let’s start with….” And off I went. And on I went. I stood up and strolled around the room doing my best impression of Professor Snape. At one point the receptionist knocked on the door to say the GP was ready, I shut the door in her face saying we hadn’t even got to second line treatment options. I knew time would be tight so I started talking double speed, I told poor trainee about Triptans, the pros and cons of Beta Blockers and when I noticed he was looking a bit peaky asked if he needed a glass of water. This then reminded me that dehydration was a key factor for migraine sufferers. Telling him I didn’t mean to be patronizing (which of course one always does) I suggested that at this early stage in his career it would probably be best if he simply referred patients with suspected migraines to the many specialist clinics I had just listed, as he could learn from the many excellent neurologists I had also just listed. It wasn’t his fault he was so young, he would learn over time, the important thing was…. And just as I was about to get started anew my actual GP appeared, looked rather annoyed, and said she’d been waiting for over 30 minutes. I, however, smiled proudly at my trainee, eager to see him show off his newfound knowledge. I felt confident I had done a great service to future migraneurs who would walk into his office in years to come. It did not, at that moment, occur to me that I had so freaked out the poor trainee he might decide a career in carpentry would be far less stressful than medicine. However, we moved to my actual GP’s office, she talked a little about the process of training a GP and, assuming I was now trainee’s unofficial tutor, I said I thought he showed great potential, great ability to listen and take notes, and would do well over time but could, perhaps, assert a little more confidence. She then turned to trainee and said  “So, why is Victoria here today?”. Trainee looked at me, horror struck, the poor boy hadn’t gotten a chance to ask this vital question. But I was there for him.

“Oh, I just came in for a flu jab.”

Addendum:
Just in case you were wondering, my lecture/neurotic rant did not put trainee off the medical professional. A few weeks later I was walking past the GP surgery and I saw trainee and GP walking out, happily discussing something. I hid behind a tree.

Addendum Addendum:
The latest statistics from The World Health Organisation suggest medical students only receive four hours, total, of training in headaches. I’m going to investigate this further and report back. Maybe I could offer my services!


Thursday, 23 February 2012

Live on Talk Radio Europe!


People, yesterday afternoon I made my radio debut. I was invited to talk about this blog and migraines on The Hannah Murray show on Talk Radio Europe. It's official, I'm now famous in Spain. I was rather nervous, never having done radio before and the conversation ended up being a little more serious than I had intended but I didn't stutter or swear. Although I may sound like a 12 year old Head Girl, I feel pretty confident that I'm now ready to take on The Today Programme. Bring on Radio 4, John Hamphrys watch out...

You can listen to the interview below - thanks to the technological genius of Julian Blackmore (who is now bribing me to say he composes relaxing music which, he believes, can ease migraine - check out his website)


Listen to my interview/rant here: Talk Radio Europe Interview - Migraine Podcast

I would just like to add that some of that facts may not be totally accurate. I'm pretty sure GP's of a certain age weren't properly taught about migraines at medical school - and that it still doesn't get the attention it deserves. I know that organisations such as The Migraine Trust and the National Migraine Centre now run training days for GP's.

Tuesday, 21 February 2012

Botox Breaking News!


I was going to continue my rant about Migrainism but a good friend sent me a link to this article in the DailyMail.co.uk stating that “Migraine Victims could get Botox on the NHS”! I’m a big fan of the Daily Mail website. Fear not, I don’t adhere to its politics, just its celebrity gossip. It’s a highly addictive website, in fact I plan to give it up for Lent. Anyway, as usual, the Daily Mail headline is a slight exaggeration. The National Migraine Centre sensibly posted the BBC version of the same news item which has a far duller, if more accurate, headline: “Not enough evidence for Botox Migraine Jab, says NICE”.

Anyway, on the very same day that this top news Botox story broke out, I was happily leafing through my latest subscription copy of US Weekly (which, by the way, was the best birthday present ever from the same friend who sent me the Daily Mail link – we share the same taste in high-brow publications) when I came across the following four page ad for Botox and Migraine:

To see the full ad and comical photos of the red head on a picnic with her child, presumably migraine free, go to BotoxChronicMigraine.com


There are two particularly interesting things about this advert:
  1. The model is a MIDDLE AGED RED-HEAD. My Father thinks this is hysterical (as I have copper auburn locks and am now the wrong side of 30).
  2.  It suggests the Yanks are miles ahead of the Brits getting this out in the market place. On the other pages there is even a coupon and a Blackberry app thing to take to your Doctor.  
I have actually tried Botox - for my migraines - not my wrinkles. Two years ago it was licensed for use in patients with chronic migraine only (15 days of headache, 8 of which are migraine). I was given the name of a specialist doctor by The National Migraine Centre, where you can now get Botox for headaches. If you might be a candidate, take a look at the fact sheet from its website, because Botox is not suitable for all types of migraine.


In August last year I was having a particularly bad run (and as you can see from my TRIED & TESTED page I’d tried most other options), so off I went to the recommended doctor with my Dad in tow. Now, my Dad is the kind of man who believes a hearty lunch will set one up for the day, and we happened to find a delightful French restaurant doing a great deal nearby. We were even offered free champagne refills after an incident involving a fruit fly; but I digress... Needless to say Dad and I arrived to meet the doctor in high spirits. We liked him immediately. He wore a bow tie, which automatically made him classy in my book. Much discussion about the merits of bow tie wearing ensued. Dr Botox, as I shall now refer to him, was chatty, amiable and within ten minutes of meeting me said “Well you are clearly a very intelligent young woman”. The use of the word ‘young’ obviously had nothing whatsoever to do with why I liked him.

In all seriousness, Dr Botox is a prestigious migraine specialist leading the field in the use of Botox and migraine. He is, I believe, involved in the trial mentioned in the articles above and explained to me, in great detail, the research results thus far. Lots of graphs and numbers were presented but at this point the champagne was kicking in. The main problem, I think, is that it’s very hard to do a placebo with Botox. Even if you’re injecting Saline you’re still putting needles into people's heads giving them, in essence, a kind of acupuncture. And even the Saline itself has been shown to help with migraine, no one quite knows why. However, the overall research does show a reduction of days in pain for patients with chronic migraine. Again, as with most migraine remedies, no one is quite sure how or why it works. The simplest explanation is that it probably jams the pain signals because it interferes with nerve activity, not that it paralyses all the muscles in your head, as I had assumed.

To cut a long story short, I ended up having approximately 29 injections of Botox across my forehead, scalp and neck. And it bloody hurt. I even made Dad hold my hand (and at one point I heard a yelp, and realized it was coming from him.) But, I have paper thin, albino white red-head skin. Research shows (and yes I will send it to you if you like), that redheads really do have a lower threshold for pain. My raven-haired sister has had Botox for a non-existent wrinkle in her forehead (I’m going to be in so much trouble for sharing this) and she said it didn’t hurt at all, just pricked. Anyway, for me it was a kind of wasp-sting pain, but not a lasting pain. And there was also a bit of blood. I needed a sticking plaster. I felt pretty sick and dizzy, which is not surprising after having 29 injections over the most sensitive bit of your head, and I got a migraine later that night. Even my raven-haired sister got a headache after her cosmetic Botox.

Did Botox help my migraines?

It can take a few weeks for the Botox to start to work, so initially I didn’t notice much difference, but my face and scalp started to feel a bit weird and tingly quite quickly. I did notice a cosmetic difference almost right away!

Below are two extremely hideous pictures I took on my phone just before, and a couple of days after, the treatment. If I raise my eyebrows in an “Oh my God I just won the lottery!” surprised fashion, you will see I get a solid row of lines across my forehead in the ‘before’ picture. In the ‘after’ picture you can see that when I try to create the same expression, the lines in the middle stop. As the Botox kicked in over time the lines totally disappeared! A pleasant benefit!

BEFORE                                                                                                                                      AFTER
 








Overall, I do think the Botox helped break the pain cycle I was in at the time. I had a pain free week where I was able to go away with my family and the first few migraines after that seemed to take longer to get started, if that makes sense, which gave me a better warning period. But then they returned as normal, so it’s hard to tell. You’re meant to have three rounds of Botox (as it wears off after approximately 12 weeks) in order to gauge its real efficacy but my health insurance wouldn’t pay for it. Baddies. And obviously the NHS hasn't quite realized the benefits Botox could have – but I'm sure it’ll get there. I would probably have paid for more out of my own pocket (or rather my Dad’s generous ones, if I’m honest) but I then discovered some other issues and am about to embark on various injections in my spine and I don’t want to confuse the two treatments. When this is over I may return to lovely Dr Botox and give it a full try; not just because I like the idea of having an immobile, wrinkle free forehead, or even because I really like the idea of not taking heavy-duty prescription drugs every day, but because it is so refreshing to meet a doctor who finally recognizes what an “intelligent young woman” I am!

Next time: Migrainist Part II and why PCT's are trying to stop patients using Zomig!

Monday, 13 February 2012

Migraine misconceptions & Migrainism: Part I


I’m not easily angered. A dinner party debate about politics will not rile me, mainly because I don’t actually know enough about politics to join in properly. If politics are being discussed I do the following (you may steal this technique): frown knowingly, tilt my head to one side, nod slowly and if asked a direct question say “Yah, yup, OK, interesting, interesting but what do you think?”  Neither will heated discussions about religion upset me because I do not want to admit that I can’t really remember much of my undergraduate Theology degree.

However, if you say any of the following I will slap you in the face:

“It must be so lovely to have all that time to yourself when you have a migraine.”

“Why don’t you just go for a jog?”

“I got rid of my migraines with willpower…”

“I didn’t want to be the one to say it, but we all think you’re a bit lazy.”

“Do you like getting migraines?”

“Just take some painkillers.”

“Grin and bear it.”

“I’m sure they’ll stop when you’re fully employed.”

“What you need is a distraction!”

“You’ll grow out of it dear.”

All these things have been said, to my face. Unfortunately no one has been slapped.  Yet. But you have been warned. And actually, the last statement is kind of true for some forms of migraine. Research shows certain migraines lessen with age. Mine, conversely, are getting worse but I’ll go into that in another fascinating blog.

My point is this: forget feminism, racism, forget dwarfism, there is a new ‘ism’ in town that effects over 15% of the world population. Migrainism.

“Migrainism is when a person suffering from migraine is treated differently because they have migraine.” 
Victoria Ann Saxton. London, England. 2011.  ©  ™

There are many misconceptions about migraines, some of which even I used to share. Gasp. My Granny used to complain of ‘headaches’ and because she was a bit of a battleaxe we all thought she was just making a fuss. Then my mother hit menopause and started suffering from migraines and we suddenly realized Granny hadn’t been making a fuss at all. And that she hadn’t been lying in her room, in the dark, for three days just because she was a stubborn old witch who had a point to prove. We still feel guilty. Sorry Granny. You see migraine is largely genetic, if you have a parent with migraine you have a 40% of getting it too. This is why I must mate with a super human bionic man with no medical ailments of any kind, and no ginger genes in his bloodline!

So, next time you meet someone who tells you they have migraine do not be guilty of migrainism.

DO NOT ASSUME THEY:
  •  Are a middle aged spinster, living alone with 12 cats
  • Are depressed
  • Like the colour beige
  • Are boring
  • Suffer from anxiety
  • Are lazy
  • Are making it all up
  • Are agoraphobic
  • Just have a bad headache
  • Don’t like socializing
In relation to this last point, I would suggest that migraineurs are, in fact, the ideal dinner party guest. I know that I am often so over excited to be able to make a social engagement, such as a dinner party, that I basically talk non-stop. So, with me around there will be no longeurs in conversation, nor will there be any heated debated about politics or religion. Ideal.

Next time: Migrainsm Part II: How Doctors are often the biggest Migrainists, and How I made a trainee GP cry…

Wednesday, 8 February 2012

Gin

There are few problems in life Gin will not fix. Often migraine associated nausea can be quelled with a Gin & Tonic. I jest not.


Picture courtesy of the fabulous Hudson Meredith x

Monday, 6 February 2012

The Face of Migraine


This weekend I had a particularly annoying two-day right sided migraine. Migraines are characterised by their one sidedness. Mine are, 90% of the time, left sided, so I do not like these random right siders. They are different in nature, instead of a vice like grip they are a throbbing stab which is worse if I move or stand up. This makes going to the loo very difficult. I also don’t like them mainly because they’re different. There is something comforting in the familiarity of my left sided migraines, I know how they will act. Anyway, enough about me – I just thought it would be good to start with something vaguely educational.

So, I awake from a snooze in the midst of right sider migraine, to find my mother intently staring at me, hands on hips. Our conversation goes something like this:

Me: Why are you staring at me?

Mum: I think I should take a picture of you.

Me: Why?

Mum: For your flog.

Me: It’s called a blog.

Mum: That’s not important. People should see you like this, then they’d really understand. You should be the face of migraine.

Me: No.

Mum: Yes.

Me: No.

Mum: Yes.

And this is the picture she took!


Let me explain. My migraines stem from, and are triggered by, a spinal injury incurred when I was 18. Thus during migraines, especially right siders, I always find it very difficult to get comfy. Second educational migraine tip coming up: during a migraine your skin may become extra sensitive, so even the soft edge of a pillow can feel like someone has put a pile of nails under your head. My mother has spent so many hours patiently arranging pillows in different layouts that she should get some kind of qualification - Jill Saxton, Pillow Arranger (Hons). She is a gifted flower arranger so maybe the two are connected somehow…

Anyway, when my mother wants to capture this special Kodak moment I have about ten Tempur pillows stuffed around various points of my body, wedging me into what probably looks to the untrained eye like an incredibly uncomfortable position. I’m wearing my lovely beige neck brace, my unwashed hair is matted around my face, I have a Virgin Atlantic Airline Eye mask around my forehead (in case I want to keep out the light) and my ten inch thick, cracked, Ugly Betty glasses are falling off my nose. I have an ice pack tied onto my head with a dish cloth designed by my 10 year old niece’s class, featuring their self drawn crayon portraits (they’re a surprisingly talented class) plus various hot water bottles wedged around me. But the finishing touch is a large tissue shoved up my right nostril, which has been utilized to stop an earlier nosebleed. There is probably some residual blood on my pyjamas. In short, I looked pretty damn sexy.

Me: Um, Mum I don’t think of photo of me looking like this is a good idea. It might scare away the two readers I have.

Mum: No darling, people should see what a migraine really looks like!

Me: No.

Mum: Yes. People should see this. I’ll get my Canon Digital Camera.

I know I wouldn’t be able to wrestle her to the ground in my current condition but I do know exactly what to say to stop my mother dead in her tracks.

Me: Mum, if you take a picture of me looking like this no one will ever want to marry me.

She pauses. I see her struggle. I have appealed to her inner Mrs Bennet that is always lurking just beneath the calm surface of her motherly exterior.

Mum: Good point.

I relaxed and fell back into a fitful sleep. A couple of hours later I awoke to find Mum lovingly replacing ice packs and hot water bottles and puffing up pillows in her professional manner. She tenderly kissed me on the forehead and said, as if to make amends, “You really do have such beautiful eyebrows.” 

Thursday, 2 February 2012

Introductions and Pointless Pain



Imagine you are a young, blond, slim, attractive, popular, funny, rich, normal woman. You are sitting on the train on your way home from a long day’s work modeling at Vogue. Out of nowhere you suddenly start to smell something very strange, like rotting egg sandwiches. In fact this smell makes you feel quite sick. And will the man sitting next to you please turn down his f’ing Ipod nano! Why has he suddenly turned it up so loud that it’s as if Madonna herself is screaming in your ear holding a megaphone with her scary biceps? You are so busy focusing on the sick egg smell, and the fact that all the noises in the train seem strangely amplified, that you do not notice the large mean man in the black cloak sweep up behind you and viciously ram a dagger into the back of your skull! Oh dear. And then Mr Evil Cloak Man just runs away leaving his massive dagger in the back of your skull. Obviously this starts to hurt a little. Then, his malicious accomplice, the well known torturer Midget Man, jumps up and rams a steel vice around your head and starts tightening it. The dagger was bad enough Midget Man, is this really necessary? He nods and turns the vice one more notch. Your head is literally being crushed, and as typical on public transport, no one is moving a finger to help you. Your eyeball may start bleeding at this point, in fact it might be about to pop out, so could someone please switch the lights off and call your Mum?




Ladies and gentleman, I have just described in a metaphorical, alliterative and hopefully amusing manner, how my migraines feel. This is all true; except that I am not a model at Vogue.

Yes, this is going to be a series of monologues about migraines. But don’t stop reading. It’s going to be deeply moving but also terribly funny. Maybe educational. Maybe there will be songs. In an ideal world these monologues would be performed by famous actresses on stages across the globe, à la The Vagina Monologues, whose title I have borrowed (thank you Eve Ensler for your permission which you have not actually granted but I’m sure you would, as I also have a vagina). In my dream world these  monologues would also be part of a hugely successful sitcom/docudrama I’ve written on Chanel 4, or NBC, that catapults my burgeoning writing career into the stratosphere. Thus my years of pain and plight lead to, and amount to… something.

Pointless pain.
And this brings me to, perhaps, one of the most annoying things about migraine. It is a totally pointless pain. See footnote at bottom*. Normally pain is the body's response to an incident. For example, a little child accidentally cuts off his little finger trying to be helpful whilst he cuts up carrots for his mother. He is so focused on carrot chopping he may not notice he has cut off his finger (this is vaguely based on a true story I heard once when I was 7.) But thank God for the body's natural pain response that alerts him to the fact that something pretty major has just gone wrong and needs medical attention. Said little helpful boy will wail, his mother will sweep him and bloody finger top up, take them to the emergency room where they will be fixed and the pain relieved. Not so with migraine. 

There is no accidental dagger cut that causes migraine pain. There is no brain tumor that causes the pain of migraine. There is no sinus blockage that causes migraine. There is no…. you get the point. And I know this will sound mighty odd but I have actually wished - dare I say - kind of tried to make a deal with God once, that I had a benign brain tumour, as this would account for the totally pointless pain I was experiencing, and would help people other than my Mum believe how debilitating this is; and then I could have an operation and never be in pain again. But with a migraine you are in total agony for up to 72 hours (on a bad day) and at the end of it you have nothing to show for what you have been through. No arm in plaster for your friends to sign, no cool operation scar, nothing. It has been a wasted, pointless, 72 hours of your life that you can not have back. Sadly, migraine is a complex brain malfunction that even top neurologists and scientists around the world can not fully explain. Luckily, migraine is not lethal (though those who've had severely acute attacks have, at times, wished otherwise), but this means it hasn’t - thus far - received the research funding it deserves. Obviously this blog will change that overnight. 

I have had migraines (single or plural, capital letter or not, I don’t know?) since I was 18. I’m now 31, though if you have a cute, financially successful, tall, handsome son you can tell him I’m 26. On these pages I will chronicle my journey with migraine over the next year. Join me.

Please see the handy links page for more medical info and for places to go for help if you get migraine. P.S. Please seek help if you have persistent headaches of migraines. Don't be ‘British’ and suffer in silence. It's just stupid to suffer in silence. If your G.P. is not helpful, get another one, or get thee to a migraine clinic. Now. Go. 

*Footnote: At the time of printing this information was correct. As far as I know there is no known cure for migraine. And as several junior doctors and G.P.’s have reluctantly informed me “Um, Victoria, I think you know way more about Migraine than I do”, so if there was a cure I think I would know about it. Also, if you think it’s scary that I could know more than your G.P. about migraine you’re right, it is scary and it shouldn’t be that way. But I will be dealing with the medical world and my many weird, varied and freaky experiences with them at another point, obviously in an amusing and heartfelt manner.

Victoria Saxton
Formerly New York, now reluctantly back in London.
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