Tuesday, January 24, 2012

My life with Migraine

OK, so this is not an easy post. I'm an optimist, I try to always be happy, and I never like to appear weak or whiny. I don't want people's pity and my troubles are my own, but this has been simmering in my mind for some time now, and I feel it's time to get it out.

Anyone who knows me, knows I suffer from migraines. Let me say that again, it's important you hear it - I SUFFER from migraines. These are chronic, debilitating and severe. I was trying to figure out how to make people understand how bad they are - this is what I came up with - in the last year (365 days), I've probably lost around 100 days (that's a third of my year) to migraines. My attacks average out to 2 days per week. I can go a couple of weeks without an attack, but then I'll get a migraine that puts me out of it for 3-4 days. When I realised how much time I've lost to migraine I was amazed that I've managed to achieve anything! How the hell did I pass my degree (let alone so well) when I lost 1/3 of my time?! And, typically for me, How much more could I achieve if I wasn't suffering from Migraines?!

I'm not sure what my intention is with this post, so bear with me, it may flit around some.

My migraines usually come in one of three delicious flavours:-

1) Migraine without aura (I'll explain aura in a minute)
These lovely migraines are the most frequent. They are characterised by an immense pulsing pain in one side of my head, nausea, light and sound sensitivity. The best way of describing the pain I've come up with is, it's like someone is repeatedly stabbing me with a hot poker inside my head. The pain is usually behind one eye, and stretches out to the temple, the hot poker is usually pushing my eye out of the socket. Every tiny sound is amplified x100, typing on a keyboard can be agony. Even the dimmest light (say from my phone screen) seems so bright it actually hurts my eyes. And the sensations of light and sound cause the pulsing hot poker to increase in strength and speed.
These, horrible as they are, are probably the simplest of my migraines to cope with. I have an excellent selection of painkillers/anti-nausea pills (chronic migraine means my medicine cupboard could rival a pharmacy) which can at least make these symptoms bearable. The downside is I have to be careful, because prolonged use of the painkillers can cause headaches!
I get one of these attacks roughly once a week. They last anywhere from a few hours to a few days.

2) Migraine with pain and aura
This lovely flavour has all the ingredients listed above plus the added tastiness of aura. Migraine aura take many forms, mine usually involve visual disturbance, numbness in my hands, arms, fingers or face, reduced cognitive capacity, and slurring/ difficulty speaking.
So taking visual disturbance first - usually I get light spots in the edges of my vision, kinda like star-bursts. These can be one of the first signs of an impending attack. Then I get a kind of detached feeling, like what I'm seeing is not real, almost like I'm watching it on TV or something. I know it is real, but the sensation from what I'm seeing is that I'm distanced from it.
Numbness - this can also take the form of tingling. I don't usually get the sensation in all of the places I mentioned. When I get an attack it's usually one or two of them. Though I have had attacks where I experienced numbness/ tingling in all of those places.
Speech - it's kinda like when I get drunk, but less fun.
Reduced cognitive capacity - this is a fancy way of saying that it becomes difficult to think. I struggle with attention, find it difficult to focus, and my problem solving skills bottom out. I can barely string a sentence together, never mind work out how to operate the computer. This reduction in my reasoning skills also leads to feelings of panic. I often find myself worrying that I'm going to die during one of these episodes. This is no joke. I know the symptoms for stroke, and my migraine symptoms are so similar I have sought medical advice on more than one occasion. I am generally terrified during one of these attacks, and this feeling of fear stays until the migraine is gone. I often have nightmares when I have migraines, and I wonder if this is why. If my fear manifests even in my sleep.
(God, this post is harder to write than I thought it would be).
When I suffer an attack of this type, I take my pills and go to bed. To my knowledge there is no medication that treats migraine aura, so the pills do nothing to lessen those symptoms. The only thing I can do is sleep. I can't watch TV (the light and sound sensitivity preclude that), I can't read a book (light sensitivity and lack of focus/attention), I can't have a chat with a friend (sound sensitivity and speech disturbance). I am completely incapacitated.
I get one of these attacks roughly once a month. They usually last between a day and week.

3) Migraine aura without pain
The rarest and weirdest of the three flavours. This is when I experience all of the aura symptoms but none of the pain. As I said, I know of no medication to treat these symptoms, so it's off to bed I go.
I get one of these maybe once every few months, they last a few hours to a few days. They also sometimes turn into one of the other flavours, but not always.

When I am recovering from an attack, I get the pleasure of what I've found out is called the "migraine post-drome". During this time, I'm a bit.... foggy. I find it difficult to concentrate and still struggle with simple tasks. My thoughts seem slower and more difficult. This feeling lasts a day or two.

I suppose, I'm writing this post as a kind of catharsis. I've just come out of the post-drome phase of a Migraine with aura attack (preceded by aura without pain) and I'm feeling reflective. I'm also writing it because it's so hard to explain to people what migraine is like. Everyone thinks it's just a bad headache (I've lost count of the times I've wanted to strangle someone when they've told me they get migraines too, and then described a severe headache). And it's hard to prove there's anything wrong with you. Outwardly I look fine, and yet I could be in the most indescribable pain you've ever experienced.

I am on medication to prevent my migraines, and the above frequencies are for when I'm on my meds. Before I started on them, I was getting one form of migraine or another EVERY DAY. I've already had to change medication, because the pills stopped working. And the dosage of my current meds has been increased twice. Once more and it's off to the Neurologist I go.

Like I said, I don't want you to feel sorry for me. Just, next time I tell you I've had a migraine, don't tell me you know what it feels like, don't look at me like I'm lying, or like I'm exaggerating. Just understand that I've just come back from my own personal hell.

P.s if you're interested in the research of migraine, I came across this article over the weekend, it hits the nail on the head when talking about living on the edge. Though I'm not sure I like the "migraine sufferers brain is never normal" comment.

If you're still here with me, thank-you for taking the time to read this post. For me it has helped. I hope it helps you understand migraine a little better.