Sunday, 15 April 2012

“The Drugs Don’t Work They Just Make You Worse…” Medication Over-Use Headache

I’ve been addicted to drugs, prescription meds and over the counter painkillers. Twice. Maybe three times.

Technically, this is not true. Technically, I’ve had Medication Over-Use Headache (MOH) a couple of times, but I say I’ve been addicted to drugs when I want to sound cool, or get people’s attention. Like now.

The lyrics of the Verve song (quoted above) make me shiver, not because I think it’s a beautiful song, but because it always make me think of Medication Over-Use Headache (MOH). MOH is an incredibly easy trap for people with migraines to fall into. I first succumbed to it in 2004 when I was living in Hanover, New Hampshire, U.S.A. studying for a Masters degree. My migraines were out of control and I knew nothing, even though I’d had migraines for about 5 years and been on nearly every preventative under the sun. At this stage I hadn’t read one single book about migraines, I didn’t know there were phases of a migraine attack, I didn’t know one should keep a diary or look for triggers. No Doctor had ever taken the time to explain any of this to me (partly because my condition wasn’t fully diagnosed yet), and I didn’t realize I needed to educate myself. At that time my vertigo was also pretty severe. I had a ‘wobble’ board in my room that I would religiously stand on each day and look at a spot on my wall, doing some vestibular rehabilitation exercises I had been given to do by a Doctor. They, of course, made me feel even dizzier. I once stumbled home from a lecture clinging to lamp posts the vertigo was so bad. I think the Yanks just thought 'there goes that drunken Brit again!'. At this point I thought jogging would help, even though every time I went for a jog I’d get a pounding migraine about half an hour later and the room would spin. And my neck and back hurt almost constantly (I also didn’t realize the extent of my neck damage). 

So, I’d basically pop painkillers like they were Smarties. My painkiller of choice at that time was Solpadeine. It’s lethal for MOH as it’s very effective, but more because it contains codeine and caffeine which, for some medical reason, make them more prone to MOH. I was also using the Triptan (acute migraine medication) Naratriptan, a slow release Triptan pill that takes a while to work. So, I’d often take a Naramaig (or Amerge in the USA) preemptively, or take two as I didn’t know if they’d worked. I also had Sumatriptan injections which I was happily self injecting on top of all this… If you know the pain of migraine this doesn’t sound so crazy. I’d wake up each day in pain, so obviously I’d take pain killers, they’d ware off, a migraine or headache would come on so I’d take more…. and the problem with these migraine medications is that eventually they actually give you a headache if you mis-use them. And the added problem is MOH feel quite similar to migraine so it’s hard to tell them apart. 

There are clues to look out for, such as you’re getting a headache of some sort every day, you feel foggy headed most days, the pain is worse when you wake up etc etc. With ‘true’ migraine you should have patches, days, in-between attacks where you feel completely fine. 

Image from & also used in the fabulous That M Word Migraine Blog. 

The advice for avoiding MOH is to try not to take Triptans on more than 2/3days a week (or @ 10 days a month.) The dose is not so important, but the number of days per week.

To spell it out, if you take Triptans on more than 10-15 days a month, over 3 months, you might get MOH. Obviously, this makes life really hard if you have Chronic Migraine and other pain inducing conditions. Life becomes a juggling act. Incidentally, a frighteningly large percentage of people with Chronic Migraine also have MOH. Fun times. All this makes getting prescriptions for the sacred Triptans from some Doctors quite tricky as they often say ‘Now, Victoria, are you getting into MOH territory this month’…..But I've found sticking to the 2/3 days a week rule keeps me clean! 

Anyway, the treatment for MOH is basically go Cold Turkey i.e come off the offending drug. But, if like me, you’ve managed to get MOH from TWO types of drugs you can’t be expected to give up all painkillers/drugs entirely. Most migraineurs get MOH (which, by the way used to be called Rebound headaches) because they take too many Triptans – in this instance they come off Triptans and are sometimes given other, carefully selected NSAID (usually Naproxen), or alternative pain preventatives, in tapered doses. But obviously I couldn’t do this as the other drugs they usual give MOH patients instead of Triptans were also giving me headaches….you see the sticky situation I was in!

Some mean Doctors will suggest you have to go completely Cold Turkey, i.e you can have NOTHING! To them I say – telling me I can have no pain relief at all is like:

  •  Telling the man in 127 Hours (who has his arm stuck under a rock and has to cut it off with a pen knife) that you have general anesthetic and surgical equipment but think it would be more amusing to watch him slowly cut his own arm off.

  • Telling a Granny with a rotting, pus-filled tooth that she needs root canal and some fillings but the dentist doesn’t want to give her those nice numbing injections. He’s just going to slowly pull out those teeth, then cut out those nerves while she’s fully conscious. And actually maybe she should just go around with gaping holes instead of teeth, leaving those rotting nerve ends exposed….

  •  It’s like telling a tree surgeon who has accidentally cut into part of his leg with a chainsaw that he should just keep on going and chop the rest of the leg off himself…

I could go on. I don’t think I’ve found the perfect analogy yet, if you can think of another, let me know. I’m a bit paranoid about this as can tell. But basically, if a Doctor offers you no relief find a new Doctor as you can get a lot of support (more info at the bottom). Some people, with severe cases, even 'detox' in hospital. Obviously every case is individual. For some, ceasing all medications straight away is the quickest and best way to get over MOH. I, however, was put on a tiered course of the steroid, Prednisone for about 15 days and also had, I think, a Greater Occipital Nerve Block. It worked wonders and broke the cycle. However, being an idiot, about four months later, I, um, got lots of headaches again so started taking loads of Ibroprufen and maybe Solpadeine and Triptans…… You’ll be pleased to hear I have not touched Solpadeine since 2004! But this is before I realized getting educated about your migraine is the key to managing them! (see Tried & Tested) Also, I’m not alone in getting MOH twice, or even thrice, there is a very common reoccurrence rate within a year… see, I’m not that stupid! It was only years later that a lovely Migraine Specialist took the time to explain to me, that the danger and trouble with MOH is your body basically runs out of its own natural pain killing abilities, i.e the tiniest trauma will trigger migraine/pain. New research suggests MOH makes our brains more sensitive to pain. Plus, if you have MOH other migraine preventatives probably wont work.

Anyway, the real reason I wanted to talk about MOH today is not because I currently have it/them (?), touch wood, but because of my lovely new friend Fran, aka the writer of the fabulous blog Skulls and Ponies. Fran had been going through a very tough patch with her migraines, (which she’s had for over 8 years) so tough she actually googled ‘migraines’ and for some reason, known only to God, came across my hysterical interview with Talk Radio Europe - that went out in Spain. If you want to listen to it – click here. I sound like a very posh 12 year old. But luckily this led Fran to my blog. Yay! But poor Fran did not realize that I would then find her email address and stalk her. I get a bit overexcited when I meet fellow migraineurs, especially ones who need to go to the National Migraine Centre, as Fran consequently did (and got the help she needed.) But Fran was already pretty clued up, so would have got there eventually.

I shall now let Fran take over the story and tell it far more eloquently than I! Click here to get to the relevant post. She is currently in week 4 of Cold Turkey. And it is hell. Going Cold Turkey sucks big time. You feel sick, get dreadful headaches and generally feel lousy. However, once Cold Turkey is over, usually you feel a whole lot better and your migraines fit the ‘normal’ pattern and acute attack medication works far more effectively.

Please read Fran’s story and support her through her Cold Turkey Hell. Go Fran, you’re nearly there! Also search for other migraine posts in Fran’s blog as she’s written some brilliant pieces recently and in the past. They're informative, insightful and much shorter than mine! Go Fran, Go! 

This is Fran's very cool Twitter pic. Follow her @skullsandponies
So neither Fran or myself are, or were, pill popping crack addicts but sometimes, "the drugs don't work they just make you worse... especially when you take too many Triptans on too many consecutive days la la la la la la la!" You have been warned! (Apologies to The Verve)

For more detailed information about MOH check out:
There are also two fabulous chapters in “Coping with Headaches and Migraines”.
As usual if you think you may be suffering from MOH get thee to the National Migraine Centre henceforth! 

P. S - Usual legal disclaimer applies. I'm not a Doctor and the drugs mentioned should NOT be taken without first consulting your own Doctor. The drugs mentioned were only given to me due to my specific circumstances and diagnosis. 

ADDENDUM:  Since writing this post NICE (National Institute for Clinical Health and Excellence) have issued new Guidelines on managing and diagnosing Headaches. A portion of the Guidelines are concerned with MOH - they state that:

"Regarding medication overuse, NICE advises the NHS to be alert to the possibility in people whose headache developed or worsened while they were taking the following drugs for three months or more:
  • Triptans, opioids, ergots or combination analgesic medications on 10 days per month or more or
  • Paracetamol, aspirin and an NSAID [non-steroidal anti-inflammatory drug, e.g. ibuprofen], either alone or any combination, on 15 days per month or more."
The press release and guideline can be read here. 

Sunday, 8 April 2012

Myth: Chocolate triggers Migraine

Happy Easter all!

Please read this lovely little headline piece by the National Migraine Centre debunking the myth that chocolate automatically gives everyone a migraine! It doesn't, unless chocolate happens to be one of your migraine triggers in which case it does...

The point is a lot of people blame chocolate for their migraine. Poor old chocolate. What usually happens is that a person will already be in the early stages of a migraine (the Prodrome stage) and might be craving sugar (hence eating chocolate.) They then develop the migraine and blame the chocolate, when in fact they were going to get the migraine anyway. You see? Developing a migraine is rarely a simple case of one blameable trigger, it's usually a sequence of events and several triggers combining. My I'm feeling educational today.

So, go gorge on chocolate. But I can't because I'm lactose intolerant. Isn't that interesting for you?!

Here is the link again:

In other headline news, I took Chipster, my Migraine Buddy, to the Vet yesterday and he has a mild heart murmur and the worst case of ear termites the vet has seen in ages!!! I just thought his ears were full of mud! Typical. I bet he'll be getting migraines soon....

Friday, 6 April 2012

Migraine Buddy

One of the main reasons I started this blog was to dispel the plethora of myths and misconceptions surrounding migraine. I’ve ranted twice on this subject. A common misconception is that a person with migraine must be a middle-aged spinster who spends all her time with 12 cats.  Before you read any further remember this is not true. It is not true I tell you. People with migraine can be under 35, cool, married, polygamous, and like dogs too. Just because they like cats and may be single and have migraines does not automatically um….

The point is I just got a kitten!

Meet Chipster.

(If you’re vaguely interested he’s called Chipster after my favourite brand of French Crisps (for American readers that’s chips not French Fries) and my sister has a kitten called Scampi…)

A week ago today I had the second round of injections on my neck, which I’ll describe properly at some point. I’ve been building up to these injections for over 6 months now, they’re the main reason I’m on Topamax as we knew they were going to increase the migraines, even though the hope is they’ll decrease them in the long run. Anyway, this past weekend was pretty miserable and I cried so much I could tell Mum was feeling rather sorry for me. I seized the opportunity. Mum was sitting with me, trying to comfort me and between sobs I stammered, “Please… Mummy…please…can…I get…a kitten now, it will help”. Without even pausing she replied: “Of course you can my darling.”

Mwah ha ha ha. Can’t believe she fell for that! Anyway, I have discovered that cats are basically vibrating hot water bottles that you don’t need to reheat and are ideal when you feel unwell. I’m also pretty sure there is scientific evidence stating that people who have pets are less likely to die of hearts attacks. I read it in the Daily Mail once so it must be true. In all seriousness, when you have to spend hours alone in pain with a migraine I thought it just might be nice to have the company of a soothing pet.

I also had high hopes that my Migraine Buddy (the kitten) might be like those epilepsy dogs that alert their owners to attacks by barking. Maybe my new Migraine Buddy would meow, or fetch my Triptans a couple of hours before a migraine was coming? Would it even know the day before? Would it somehow usher me to bed knowing I needed rest to avert an attack? Cats are very intelligent creatures.

So, on Tuesday night Dad and I drove off to a dodgy suburb by Heathrow and got lost trying to find the house of a ‘breeder’ he’d heard about at a supermarket. I feared for our safety but by now I was getting an over-excited Tension Headache. I could tell it wasn’t a migraine as the pain was all over my head and radiating from both shoulders - migraines are characterized by their one sidedness  (educational fact for you). However, seasoned migraineurs will know that any headache: sinus, hangovers, ice cream headaches, will most likely turn into a migraine if you’re prone to them. I knew the clock was ticking.

To cut a long story short, we found the ‘breeder’ (a guy with a pregnant cat) and I had to choose between two very cute fluffy ginger kittens. It was like Sophie’s Choice. I got a migraine. 

And my dreams of a super intelligent Migraine Buddy who would magically fetch Triptans and sugary snacks from my handbag, and bring comfort and calm, have been replaced with sleepless nights and a complete state of anxiety. I don’t know how people have real life babies. I’ve had two left sided migraines and two right sided migraines since getting Chipster four night ago, mainly because he wants to sleep on my head, which is bad for my neck. My neck that is undergoing treatment which I’ve been preparing for over half a year! 

However, I adore him and am obviously obsessed and these are the happiest migraines I’ve had in ages. Mum suppressed her inner Mrs Bennett (see the Face of Migraine) and took this picture of us when I was sleeping in a migraine haze.  

Her photography skills are not renowned but don’t my nostrils look lovely?

I also paid for Chipster with my Virgin Atlantic American Express Credit Card, so now he will also have given me the gift of Airmiles.

Do you have a Migraine Buddy? Maybe a human one? I know migraineurs who have friends or relatives who can tell before they can when they’re going to get a migraine. 

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