Saturday, 26 May 2012

School Boy Error – running out of Migraine Meds


“They can’t get it,” said Dad with his usual deadpan/Eeyore face which always makes it impossible to tell if he’s joking or not.

“What? I’m sorry. What did you say?”

“I said, THEY CAN NOT GET IT FOR YOU,” repeated Dad as if talking to a deaf eighty year old. “They tried all their sources but they just couldn’t find it.”

“No, that’s not right. They always get it for me. There has to be some mistake.”

“No mistake Darling, don’t you watch the news?”

“I watch Home & Away and Neighbours, why is that relevant?!”

“There’s some difficulty getting certain prescription medications at the moment, it was all over the news last night.” And with that he pulled out my green repeat prescription slip from his coat pocket, instead of a nice big bad of meds, and the room starting to spin.

“Oh God oh God oh God oh God” I was trying, and partly succeeding, not to panic. I heard Dad yell to Mum:

“Jill, I think you better come here, Victoria looks like she might have some kind of fit.”

Mum duly arrived and told me not to panic, adding “Don’t you watch the news? There was this poor Cancer patient who couldn’t get her medications so just be grateful.”  I downed a whole bottle of Rescue Remedy and was secretly very glad that it was Dad who had gone to our trusty Lloyds pharmacy to try and pick up my prescription and not me. It’s unheard of for them not to be able to get my regular dose of Zomig nasal sprays (the triptan drug that can stop a migraine in its tracks.) I’ve been using them since 2004. If I had gone to pick up the prescription and been told it “was not possible to get” I would probably have done something fairly embarrassing such as: 1. Shouted that this was surely illegal in the Queen’s own country. 2 Burst into tears and sobbed hysterically. 3 Sung what I deemed an appropriate medley from my favourite Musicals. Two of these three scenarios have occured in pharmacies across the globe, I’ll leave you to guess which…

So, I sat in my bedroom and mentally pulled myself together like every great heroine. Surely, there would be one pharmacy in London that could fill my prescription before the next migraine hit? You see, I was in this blind non-panic because I had committed a classic school boy error – I had run out of my main migraine medication. I had no Zomig’s left! None at all.  And just so you understand, if I don’t take a triptan as soon as I feel a migraine coming on I can be in deep shit, to put it mildly, for up to 72 hours. Discovering triptans completely changed my life. Sadly they don’t work for everyone and they don’t always work for me. I use Sumatriptan injections for mega migraines, and when those don’t hit the spot I know I’m in for 3 days of fun! (By the way, I did have 2 Sumatriptan injections left but you can’t exactly give yourself an injection on the tube! I also save these for special occasions.)***

A Zomig nasal spray! 


Anyway, you’d think being a migraine pro of 13 years this could never happen to me. I normally send in my repeat prescription when I have two Zomig’s left to avoid just this type of situation but this time I got caught short. I wanted to set out on my Zomig quest immediately but realized I was due at my physio in Central London.  But this was actually perfect as it meant Saint Jill (otherwise known at Mum) could take over the quest while I had mild hysteria and did an hour of orthopedic rehab. There are also a plethora of industrial pharmacies near my physio, including a hospital, so I felt fairly confident the quest would be successful but would you believe it….

Oh my God…just joking, she got some. But the pharmacists did say they were finding it very difficult to get a lot of drugs, so it really could have been as bad as I was imagining it to be in my overactive, catastrophizing imagination!

So, before you judge me too harshly for getting into this situation, I got the new batch of 6 Zomig sprays last Wednesday and have already used up 3. It’s frighteningly easy how quickly they evaporate. When I get a fresh batch I even try to hide one from myself (I do realize that’s impossible but you get what I mean.) I put two in my bedside drawer for nighttime migraines, two in various handbags and the final one in my ‘medicine cabinet’. Isn’t that interesting! And to make matters worse tomorrow I’m going away for a week so had been meaning to stockpile. So I then had to make a special trip to the GP. I wasn’t sure whether to lie and make up some random excuse such as “My friends Dog ate them all which is why I need another load already!” (Which is partially true, Hello Parsley!) Or just be honest. I was honest and it was fine in case you’re wondering. Though I did go to Lloyds pharmacy first, to check they could actually get and set aside a box of Zomig for me. Otherwise I was considering importing them illeaglly via eBay. 

Anyway, hopefully this cautionary tale has reminded you all of the mild heart attacks, hysteria and deeply unattractive sweat patches (which are not good for migraines) that can ensue if you’re silly enough to run out of your medications. Don’t be like me. Get thee to the pharmacy.

****Irony

For your mild interest - here is the reason my prescription was hard to fill.


Monday, 21 May 2012

A glorification of migraine?

Yesterday, prolific journalist Eva Wiseman wrote a somewhat surreal piece about her experiences with migraine. Specifically she described how her aura manifested and depicted something known as Alice in Wonderland Syndrome which, as you may have guessed, is named after that famous work of fiction. Lewis Carroll suffered from migraines and many believe his visual auras influenced his work.

For migraineurs, Alice in Wonderland Syndrome (AIWS) is a specific type of aura where body parts usually seem distorted, becoming either much larger or smaller, hence the name given to the condition. While Wiseman's article is, I believe, beautifully written it has created something of a stir amongst the migraine community. Why? Because it appears to be glorifying migraine. One reader commenting on the article wrote: "I've never had a migraine. After reading this article I'd like to have it at least once. :-)"

As you can imagine, this was not well received. I waded into the debate when people started to question the decision of NICE to give BOTOX to chronic migraine patients on the NHS. I'm under the username Britred if you want to read my various comments. I tried to be as neutral as possible and direct people to The Migraine Trust and the National Migraine Centre, I'm actually quite proud of myself for not getting too heated...

Personally, I'm pleased that a young, popular figure like Wiseman is even writing about migraine at all. I hope she continues to do so. I think it's a vivid, pleasing description of what her migraines feel like - to her. Some people do feel euphoric before or after a migraine - oh that I was one of them! But I can completely relate to the Angel perfume and putrid rain smell parts of her piece. I actually want to slap anyone wearing Angel perfume (bizarrely it's the only perfume which makes me feel like tiny daggers are being hurled down my nostrils causing my throat to swell and soon I won't be able to breathe) so watch out. My view is that all publicity is good publicity, and I think it's great that it provoked such a heated debate and allowed a lot of us to share information and resources. So far there are 139 comments and counting...

And maybe now someone who doesn't find migraines quite so visually intriguing or creatively stimulating will get to write a counter argument? Guardian editors if you're reading, I'm currently available!

What do you think? Where you enraged or enlighten? 

Here is the link to the piece:
http://www.guardian.co.uk/lifeandstyle/2012/may/20/eva-wiseman-headache-migraine-botox

Information on AIWS:
http://medical-dictionary.thefreedictionary.com/Alice+in+Wonderland+Syndrome
http://migraine.com/migraine-basics/migraine-phases/




Wednesday, 16 May 2012

Exercise and Migraine


I looked at my watch. Shit. I was running ten minutes late. I abhor being late, I’m one of those people who would rather be half an hour early for an appointment than even five minutes late. I slammed the front door behind me and prayed that I wouldn’t have to wait too long for a bus.

I made my way onto the main road, power walking toward the bus stop which was now just three blocks ahead, I turned round to look down the road to see if a bus was approaching. There is always that moment of horror when you either see a bus just leaving the bus stop, or see one approaching but know you’ll never make it to the bus stop in time. I couldn’t see a bus so kept on power walking. I swiveled round again, a risky move considering vertigo used to be a big problem for me and I have a ‘dodgy’ neck (very technical medical term) and lo and behold a bus was coming round the corner. And then something very strange happened. Before I even knew what was happening my legs were doing something odd. I had broken into a sprint! I was running! To put this into context, I have not officially been jogging, or done any real aerobic exercise since 2004. Yet, some reflex made me run for my life to catch that bus, my neck brace was attached to my handbag (I was meant to be wearing it but because I was late I’d forgotten to put it on.) So here I was running along the street like a crazy lady, my arms waving frantically at the driver whilst shouting “Wait for me! Wait for me!” And the driver did wait for me. I fell into the bus and was so pleased with myself that I did a little ‘Rocky’ victory move, hands above head style, and said out loud to my fellow passengers, “I made it! Look! I made it!” No one clapped. Obviously, they didn’t realize quite how momentous this was. I pushed aside a nearby Granny, knowing I wouldn’t make it to the next available seat, and as the bus set off wondered if it was too late to qualify for the Paralympics.


And then, whilst sweat seeped out of pores I didn’t even know existed, panic suddenly set in as I think I experience my first ever asthma attack. I quickly put on my neck brace and realized the chances of me being able to stand up and get off the bus were slim. Now you must be wondering what appointment could possibly be so important that I would put nearly a whole year of physiotherapy treatment, Doctors appointments, in-patient injections on torn discs, nerve damage, degenerative and hyper mobile neck joints, in jeopardy? Well, I was not late for a job interview, nor a work meeting. I was not late for a date, or even a social engagement of any kind. I was late… for a manicure.

But I tell you these manicure people can be mean!! You don’t understand here in the UK they can get nasty. I was once late for a manicure on my Birthday and they made me cry. Oh how I miss $11 manicures in NYC where you essentially hold hands with a stranger and they don’t try to make small talk, possibly because they can’t speak English. Anyway, point is, I did not want to be late – and some reflex had taken over to ensure I wasn’t. And maybe I haven’t been getting out enough due to chronic migraines so this appointment seemed a little more significant that it really was (Mum made me add this sentence.)

Anyway, sitting having my beautiful Shellac manicure (it really does work by the way, the polish does stay on for nearly 2-3 weeks) my 50-yard dash was quickly making itself known. My left shoulder and hand had gone numb, my shoulder and neck muscles had already turned to rock and I could feel a mini spasm creep up the back of my neck. In a way it felt as if my neck was crystallizing, if that makes any sense at all. And, before long a migraine had set in. This happens every time I do any type of aerobic exercise. And no, don’t be silly, of course it didn’t occur to me to stop the manicure and go home. I had made it this far after all.


The above incident, which I now like to refer to as the ‘manicure migraine’, actually took place a couple of months ago, but I’ve only just plucked up enough courage to confess. I was not worried about telling my physiotherapist or the pain specialist / orthopedic physician who had been giving me nerve blocks and other treatments for the dodgy neck, oh no, the person I most feared confessing to was Mum. As you can imagine, ‘manicure migraine’ triggered a mini spate of other migraines and problems. Mum was slightly bemused as to what was happening, I did my best to fob her off saying I’d sat in a bad chair the night before (which can trigger migraines for me) but she didn’t buy it. To re-iterate my stupidity once again, at the time I was just about to start Prolotherapy (a series of injections down my neck) which are hopefully going to stop my neck going into spasm which it can do if I tip my head back to put my hair in a ponytail. I had spent months getting my neck stable enough for the Prolotherapy and I still ran for the bus! When I finally did confess to Mum she said:

“I’m completely and utterly shocked.”

“At my total stupidity to put my treatment in jeopardy and essentially give myself a migraine?”

 “No, I’m used to you doing that Darling. I’m shocked that you could actually physically run. It’s been so long since you’ve done any real exercise, I didn’t know you could put one foot in front of the other and move. I’m almost impressed. By the way your nails did look lovely”.

Phew!

So, when people helpfully suggest I do some vigorous exercise to get rid of my migraines I will now refer them to the ‘manicure migraine’ incident. But I am not typical of all migraineurs, I also have a type of cervocigenic headache (headache stemming from neck injury) and I can’t swim or do yoga at the moment as even these gentle forms of exercises trigger attacks for me. I look incredibly cool and walk up and down the pool instead, it’s actually quite hard work. Conversely, sitting in one position for too long and getting stiff also triggers migraines for me, it’s a tricky balancing act. But I do fully intend to get back to other forms of exercising one day but at the moment I can’t. Nearly a year ago, just as I was coming out of a three-day migraine, my neck went into a mega spasm after I sneezed which triggered a descent back into chronic migraine land and regular spasms. I had to give up my part time job and getting healthy again is my current job. And yes, I still ran for the bus. (But my neck has been doing this for years and its been getting progressively worse… oh leave me alone!)


So, on a serious note, the debates about exercise and migraine abound and clearly more research needs to be done. But I refer you all to the fabulous migraine blog, That M word, for an example of where building up to regular exercise seems to have worked wonders as a migraine preventative. For various reasons, migrainuer Emily Guzan decided to come off the daily preventative Topamax (which I’m currently on) and build up to a very careful and gradual exercise routine and the results are, so far, astounding. This last weekend she ran a 5K and has had only one migraine since March 18th! But I’m sure she’d be the first to say that regular exercise is only one part of Emily’s migraine preventative life-style. Check out her blog to see what other techniques she employs.

Emily running in the 5 K! Photo via That M Word

Interestingly (well I thought so) I recently read about a 2011 study from a Swedish University in which 91 patients where divided into three groups. One was put on Topamax, one given relaxation exercises, and the other given an exercise programme to do three times a week. After 3 months ALL sets reported a 95% drop in migraine frequency, thus suggesting that regular exercise might be an equally effective preventative compared to drugs such as Topamax and relaxation therapy. (Links to full study below.)

So, YOU know your migraine best and it’s a question of carefully and methodically working out a prevention, lifestyle and treatment programme as a team with your Doctor. A good start can be to keep a detailed Migraine Diary (I link to some good ones here.) But for some exercise is a trigger and for some it works as a fabulous preventative, everyone is different as is every migraine. And there are many different theories and reasons as to why exercise can be a trigger, so do some research and talk to your Doctor. Medical ‘advice’ is generally that a gentle, regular exercise programme usually works as an effective preventative. Exercising too rigorously, especially when you’re not use to it, can lead to an ‘exertion’ headache or migraine and many other factors, such as heat and blood sugar, play a part. The Migraine Trust have a great fact sheet on this topic. Meanwhile, I’ll stick to walking up and down the pool and doing the floor strengthening exercises my Physiotherapist prescribes. And Mum has also offered to paint my nails.

Is exercise a trigger or a preventative for you? Has yoga helped or hindered?

Further reading and resources on migraine and exercise:

Friday, 11 May 2012

Botox on NHS one step closer!

Well this morning the British media is buzzing with the news that Botox may soon be available on the NHS for those suffering with chronic migraine. Radio 4 are even talking about it.

It's not even 7.30am as I type this and already I've had several emails and my Twitter time line is jam packed with the news.

NICE (National Institute for Health and Clinical Excellence) are now going to recommend Botox for certain patients, following on from February when they asked Allergan (the manufacturer) to provide more proof of its efficacy.

But let's not get carried away. Botox isn't for every one. These guidelines only reccomend its use for chronic sufferers - which The International Headache Society define as someone who gets a headache on at least 15 days a month, 8 of which have to be migraine, over a three month period. Figures vary but there are an estimated 700,000 chronic migraine sufferers in the UK. Furthermore, the guidelines only suggest the use of Botox when three other migraine preventative medications have failed (look at my Tried & Tested page to see how many I have taken over the years) and when Medication Over -Use Headache isn't a factor. So basically don't all run to your Doctor hoping to get a smooth forehead whilst getting rid of those headaches in one fell swoop.

I've actually tried one round of Botox which you can read all about here (and marvel at some lovely pictures of my forehead) but you really need three cycles of treatment to determine efficacy.

Anyway, overall this is brilliant news as I had to cough up for my Botox and it ain't cheap. So if you want to find out more I urge you to watch this video on the Sky News website as it features Dr Elrington who not only wears a very snazzy bow tie but, more importantly, is the Medical Director of the National Migraine Centre where you can currently get Botox. The video also explains how Botox is believed to work (but as with most migraine preventatives no one really knows yet!) If you can't wait for the NICE guidelines to go through and want to talk to a migraine specialist about whether or not Botox would be a viable option for you, give The National Migraine Centre a call.

Please also read The Migraine Trust and British Association for the Study of Headache (BASH) joint statement on this issue: http://www.migrainetrust.org/news-draft-guidance-recommends-botox-for-preventing-chronic-migraine-15032

Bellow is a selection of the media buzz surround this Botox story:
http://www.bbc.co.uk/news/health-18021017
http://www.dailymail.co.uk/health/article-2142657/Botox-given-green-light-treating-migraines.html
http://www.guardian.co.uk/society/2012/may/11/botox-go-ahead-migraine-sufferers?newsfeed=true
http://news.sky.com/home/uk-news/article/16225867

For more information on chronic migraine and on Botox and migraine check out:
http://www.migrainetrust.org/factsheet-botox-for-migraine-10899
http://www.migraineclinic.org.uk/wp-content/uploads/2012/03/Factsheet-Botox-12.1.122.pdf

Tuesday, 1 May 2012

“God I’d hate to be your Doctor.”

“God I’d hate to be your Doctor.” says my Dad.

“Wha.. What! How can you say that what are you talking about oh my God! “ I squeal in a voice three octaves higher than my usual one.

“You know what I mean, you’re every Doctors’ nightmare.”

“But I’m right! And you know research shows that patients who are actively engaged in their treatment are more likely to receive benefit. Do you want me to get my migraine bible and read you the passage I highlighted in pink highlighter?”

“You’ve read it to me before. I’m going to make us a Gin and Tonic.”

For those of you at home, here is the relevant passage :

“…An educated patient is a patient who has the potential to experience optimal headache relief. You should know as much as possible about your headaches, your treatment plan, and the medications you take. Sometimes the amount and type of information a patient receives are defined by the doctor-patient relationship."
[p.g109. Conquering Headache. Fourth Edition. By Raport. Sheftell. Tepper.]

Let me take you back to the consultation, earlier in the day, that prompted Dad’s unforgivable comment. I’m not going to tell you who’s saying what – but I am the first person speaking:

“But isn’t it possible that the Tramadol, you prescribed, is causing the vomiting and diarrhoea. It is a known side effect.”

“It’s very unlikely”

“Yes, but the symptoms coincide with the commencement of the Tramadol!”

“I’d still be very surprised.”

“Ok, well are we going to think about doing an X-ray and Ultra sound now? Isn’t it time?”

“I’m going to start with a blood test.”

“But why not also do an X-ray and Ultra sound, to get as much information as possible. If it’s not the Tramadol, it could be early stage stomach Cancer? ”

“Darling, let the man do his job”.

The above conversation was, in fact, with a Vet. The patient, our 13-year-old blond Labrador, Bimbo (Mum thought the name would be hysterical!). But I’d just like to point out I WAS RIGHT!!!!! The severe vomiting and diarrhoea was caused by the Tramadol! I know my Opioids, people! And yes, I was being somewhat annoying but I was also trying not to sob throughout this consultation, I’m very attached to Bimbo. The Vet is really good, very lovely, careful and methodical and has Bimbo’s best interests at heart. (This is me apologizing.)

But I’d like it to be noted that in the process of cleaning up one bout of particularly runny diarrhoea I smacked my head on a shelf, not ideal for someone with migraine. So I had a particularly vested interest in getting to the bottom (ha ha) of Bimbo’s plight.

Bimbo with a Valentine's Day rose...
But back to the human species relationship with Doctors. Since my car accident in 1998 and the onset of my Migraines, I have seen many, many Doctors, Specialists and Nurses. I’ve seen some of the top Consultants in the country, both here and in the States. I have observed that we mere mortal patients have a tendency to treat these revered Doctors like Gods. This is understandable as our lives, our pain and our health is largely in their expert hands.

But we must recognise that they’re not infallible, they make mistakes, they’re humans too. A couple of years ago it struck me that I could refuse to be intimidated by another Doctor when I remembered that I too could have studied medicine at university. I got the grades. My peers at university were no more clever than I. They had just chosen to study another subject. I’m not denying that medicine is a calling, requiring a specific skill set, determination and passion but I’ll have you know I got A* for Science GCSE, I could have done science A-Levels! I also have three Masters Degrees, which surely adds up to one Medical Degree… um? The fact that these Masters Degrees are in creative subjects and I have chosen to heal the world through Musical Theatre rather than medicine should be irrelevant! My point is, it can be helpful to remember your friends from undergrad who went on to become Doctors when faced with a scary, patronizing Consultant. The Consultant standing before you was once downing shots in the student bar. Is he any different to your other friend who has now gone on to become a top Architect? Yes, your life is not in your Architects’ hands, but remembering that medicine is a subject that you could also have studied and a career you could have chosen, might help you feel less tongue tied and inferior in front of that Doctor who tells you your pain is ‘psychological’, or ‘no, that’s wrong, that pill couldn’t possibly give you that side effect’.

Of course our Doctors know a lot more about medical conditions than we do, but this attitude of reverence, and our blind faith in their abilities, does not always lead to the best outcomes for us, the patient. The course of treatment I’m currently on has purely come about through my own research and perseverance. I have a complex type of migraine (but don’t we all) and have had to really push Doctors and even find Doctors who were willing to treat me. I could give several examples of misdiagnosis and mistreatment that set back my progress, which is why I’ve become an advocate for education and active participation in treatment. Plus, the ‘good’ Doctors I have met over the years have encouraged this. I do, obviously, listen to my Doctors’ advice and expertise but all the time remembering that I KNOW MY MIGRAINE BEST. I have also known some truly compassionate, genuine and astounding Doctors to whom I am forever grateful. I even named my last kitten after one. So please don’t mistake this for a diatribe against all Doctors on the planet. I just want migraineurs to be aware that they have to be active participants in their treatment, they have to be as educated as possible in their condition, and have the right to question their Doctors.

Doctors will always have a bias to their own particular field and area of interest, which might not help your particular migraine. So don’t be afraid to question the prestigious man/woman in the white coat. Dad is probably right; I am most likely a Doctor’s worst nightmare, but I do my best to be as charming and amusing as possible to coat my steely determination to get better.

End of rant.

This rant/terribly interesting monologue – was prompted by two pieces I recently read:

1. An article in last week's Daily Telegraph with the Headline:


NICE are to issues guidelines for the treatment of headaches. The article goes on to say “The guidance will for the first time give GPs information on how to diagnose and treat the three most common types of headache; migraine, tension and cluster.” I’m very glad NICE are finally paying this topic some much needed attention and I can’t wait to read the ensuing report - but the article is wrong (unless I’ve misunderstood). GP’s already have a FANTASTIC management and diagnosis tool in the shape of the BRITISH ASSOCIATION FOR THE STUDY OF HEADACHE (BASH) guidelines. Anyone, with any sort of headache and migraines MUST READ them, right now. They’re a gold mine of information, you’ll learn a lot about the drugs you’re on and why, you’ll also pick up some useful tips and maybe get some good ideas to discuss with your GP about your treatment. If you GP hasn’t heard of the BASH guidelines, then maybe you should worry.

2. I also recently read an incredibly profound post from the blog “Diary Of A Benefit Scrounger” by a chronically ill patient, Sue, called “It’s all in your Head”. Migraine sufferers will relate more than most to this title, even though the post is not directly about migraines, but the dangers of doubt. I have quietly had to fight friends and Doctors over the years, fight them not to doubt the pain I was in and to believe that a major trigger was my neck (but that’s a whole other series of blog posts!) It’s an incredibly demoralizing (and ongoing) process.

Sue is currently in hospital, awaiting another operation, and suffering an unbelievable run of bad luck. Please read her post and I know you’ll be astounded that someone can write so eloquently when in such pain.

p.s Bimbo continues to flourish away from the Tramadol. We told the Vet that the women in the Saxton family (all of whom have migraine) don’t do well with Opioids so he better find another form of pain relief, which he is happily doing. 

Next time: Migraine Comfort Tips & Rituals

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