The matter of migraine

Migraine. Not a headache. Not something that goes away when you take two paracetamol. Not a headache. Not a convenient excuse to phone in sick with.  Not a headache.

Migraine. Losing my eyesight. Not being able to put my head on a pillow. Vomiting. Feeling like my head will explode from the pressure. Drugs. A lot of drugs. Injections in my head. Lying in the dark. Hospitalisation. Confusion. Exhaustion. Sometimes seizures.

Definitely not a headache.

Migraine. Nothing to do with chocolate, red wine or cheese. Nothing to do with my periods, my weight, or stress levels. Nothing to do with being tired, or trying to do too much. Nothing to do with going on Guide camp, or Brownie holiday.

Migraine. It’s great that paracetamol/ lavender oil/ a cold compress/ ibuprofen/ a migraine stick/ not eating  cheese, dairy, wheat, alcohol, yeast, chocolate... etc/ yoga/ standing on your head/ talking about it/ not talking about it/ lying down in a darkened room/ exercise/ resting/ not making a fuss/ getting on with things/ taking some time out... works for you. Sadly I need drugs. Strong drugs: Sumatriptan, Polychloraperazine, ibuprofen, clobazam. Occipital nerve blocker injections. And when and if they work, sleep. A lot of sleep. A sick bucket. The dark. The quiet.  And sometimes none of that works.

In the UK today 190,000 people will have a migraine. And that’s just the ones we know about. I don’t have one today *hurrah* But I might do tomorrow. Although I try not to think like that.

I have what’s called chronic migraine that means without intervention I have 15 or more days pain per month. It started after a bout of what we think was meningitis in 2011. Either that or that was the first migraine. Only last week my partner said that his parents came to visit me while I was in hospital. No clue. Apparently my Mum spoke to me around the same time and I was talking slurred gibberish. No clue about that either.

Anyone can get migraine – children, teens, adults. It doesn't discriminate. Sadly, many of us with migraine are discriminated against – support from the medical profession is notoriously hard to find, it’s difficult to gain support at school, college or work when many, many people use ‘migraines’ as shorthand for a headache. And that’s not to put down the effect a rotten headache can have on you. But there is a difference between that and migraine.

1^st – 7^th September is National Migraine Awareness week – awareness and understanding of migraine is incredibly low yet more people suffer with migraine that with Asthma, Epilepsy and Diabetes combined.  Why not get involved – join in the discussion on Facebook or Twitter using the hashtag #morethanjustaheadache. Or just go onto the Migraine Trust’s website and have a look at how migraine affects 1 in 7 of the UK population. The travelling diary is particularly good.

Migraine. Not a headache.

And all shall know, the song of Purple summer: International Epilepsy Day

Photo credit: Mark Reader

Or Purple day as it's also known (hence the somewhat tenuous link to a song title) Although, Lauren Pritchard who originated the role of Ilse on Broadway, and I both have Epilepsy, so not so random. For once. 


Yes folks it's that time already (are the years getting shorter or am I getting older) Today in International Epilepsy Day, where we try to raise awareness of Epilepsy as a condition without focusing on the limitations, but instead on what those of us with epilepsy can, and do achieve. 


For me, epilepsy is referred to as Brian. My very own, personal Gorilla. As written about here  and also on the BBC Ouch/ Disability forum. I won't reproduce all of The Gorilla in my house here as you can read about it on Batsgirl's blog, but every time I read it, this paragraph resounds particularly pertinently to me:

"The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing."

 Brian does have a tendency to sit on my head. 


However, as I posted last year, that doesn't stop me achieving. Sometimes I do need alterations and adaptations to ensure I'm on a level playing field with everyone else, but I manage. I achieve:

• GCSEs
• A Levels
• A degree in English & Drama (2:1)
• CTP in Learning & Development (distinction)
• GirlGuiding UK's Adult Leader Qualification for Brownies
• I can ride a bike
• I can run
• I can swim
• I can sing (I was a Bishop's Chorister don't you know)

All achievements I am hugely proud of. I have also been asked to be Godmother to one of my dearest friends' son. I am so proud as to me that is a huge honour. I also work full-time, blog part-time, volunteer. I live, I laugh, I love. I do the same as you, except I occasionally have a gorilla who sits on my head. And bounces. 

Epilepsy doesn't stop me achieving. I firmly believe that if I set my mind to something I will get there. Take this blog. Last year I started to really take this seriously, to post regularly, to work hard, to take up PR offers to make it better. To really get the message out there that cooking is accessible, using good quality ingredients doesn't cost the earth, and that home baked cake is just better. In return I've seen my readership escalate steadily, my rating on the wikio and most recently the Foodies 100 do the same. And I've done most of that with a chronic migraine (thank God for Dragon)

You might not know anyone with epilepsy, but you might. Do you know how to support that person if they have a seizure? Do you know about the different types of epilepsy? If not, have a look at the Epilepsy Society's website. I'm treated by them and the difference it has made to my life is immense. 

So this year I'm building on that with your Top ten first aid tips when someone has a seizure:

1. Stay Calm
2. Look around - is the person somewhere dangerous? If not, don't move them. Move furniture or similar objects away from them
3. Note the time the seizure starts
4. Stay with them. If they don't collapse, but seem blank or confused. Gently guide them away from any danger. Speak quietly and calmly
5. Cushion their head with something soft if they have collapsed
6. Don't hold them down
7. Don't put anything in their mouth
8. Check the time again - if a seizure where someone is shaking (convulsing) hasn't stopped after five minutes, call an ambulance
9. After the seizure has stopped, put the person in the recovery position and check their breathing is normal. Check their airway isn't blocked. If their breathing sounds difficult - call an ambulance
10. Stay with them until they are fully recovered. If they are injured, or have another seizure soon after the first. Call for an ambulance