My Migraine Story
So it is now 2013 – and I have been a migraineur since 2006, that’s a total of 7 years and counting; 7 years of pain, confusion, isolation, misunderstanding and a complete breakdown in my self-worth – for the most part of the last 7 years it was also countless tests, appointments, visits to the A+E and so many paramedics that I lost count. The reason? I have only had a diagnosis of migraine for the last 10 months or so, but that diagnosis is one of Basilar Type Migraine (BTM).
This type of migraine means that I lose consciousness; I’ve had so many drops to the floor that I actually have to question if I somehow prefer lying on the floor to going about my day. The worst of my falls include falling down the stairs, dropping in the kitchen whilst holding a glass which consequently smashed and cut-up my face, collapsing inches away from the platform edge at a London tube station and colliding head first into the corner of my manager’s desk… these are to name but a few; there are so many others just random collapses in the street, or at work, at home, whilst asleep etc. I tell you this, so that you get a picture of what life has been like for the last seven years – and that’s before we get to any other ‘real’ symptoms.
My frequent collapses are partially also the reason why it has taken so long for a diagnosis: it’s been mistaken for tachycardia (fast heart rate), anxiety disorder (well of course I’m anxious!! I appear to be collapsing periodically for no apparent reason!!) epilepsy, low potassium levels, hypotension, hypertension – pretty much everything that you can imagine. Worst of all is that all of these ‘theoretical diagnoses’ came with a whole host of tests, blood tests, scans and appointments.
Finally, I’m out on the other side with a diagnosis and medication to help control it (both prophylaxis and rescue)- and with it comes hope; hope that I might be finally able to manage what has been troubling me for so long; hope that I might be able to step out the front door without constant fear; hope that I might, just might, make it through the day without the pain, the embarrassment and the humiliation – although, I have changed my rescue meds 3 times in the last 10 months and increased the dose of my prophylaxis meds 7 times in the best ten months – I still live in hope.
Sometimes, it feels as though the very worst thing about having basilar type migraine, is for someone, be it a friend, colleague, passer-by or family member to witness an attack and question me later. I always feel mortified to answer with that it is a rare form of migraine. It is not their fault that they understand and I imagine that if I was in their shoes, I too, would find it hard to understand how someone who took a collapse, did so because of a migraine. Before all this happened, like most non-migraineurs, my understanding of a migraine was just that of a very bad headache. I can’t imagine trying to understand that a friend, colleague or a member of my family hit the decks to a migraine. This constant feeling of humiliation drags me down and with it comes a lack in my self-worth or the belief that somehow this is all my fault; the very worst that I’ve felt is that following one particular collapse, I was accused of faking.
That really got me down and took an age to get over; I could no longer take labs at uni and had to have my course re-arranged; I’ve been fired from a job; am currently fighting tooth and nail to keep my current job; I live in fear that something would happen to my son or that someone will decide that I can’t cope and take him away from me; I’ve had so many blood tests and appointments, paramedic crews and A+E visits, and I spend everyday wishing it would all go away. Every day after an attack is the worst – not only am I coping with the ‘hangover phase’ of the migraine, but battling my self-esteem — yeah, of course I’m faking!! I promise you that it took all of my self-restraint not to hit the person who said it, and my husband could barely contain his rage and was so upset on my behalf; are you really that shallow that you would think someone did this on purpose — the worst part is that, if someone thinks this, it shows that they can’t possibly think too much of me in the first place.
The way my migraine works is in the way of migraine with aura. Preceding an attack, I always go cold – it could be 30degreesC outside, but my temperature would drop so much that I would start shivering really violently. Then comes the dizziness, the nausea, dry-mouth, tingling in my feet and hands, inability to concentrate or focus – and within half an hour I will be out cold on the floor, with or without seizures (that are non-epileptic in nature, because BTM mimics neurological conditions such as epilepsy) — this is the aura phase of the migraine. The best part is trying to explain (now at least) to paramedics that it is a Basilar type migraine (which, I guarantee you, 90% of paramedics, or A+E doctors have never heard of) and that the seizures AREN’T related to epilepsy. But, most of the paramedics’ concern is focused on the seizure activity, despite my taking great pains to explain that that isn’t what they should be focused on – it’s a symptom, not the cause, of a collapse.
Then as I regain consciousness, noise and light sensitivity, nausea, more dizziness and tinitus – hit me – this is the part that is most excruciating; I’d rather stay blacked out — the migraine, oh the pain! Even listening to people talking in a relatively normal tone of voice is unbearable and you can forget any kind of light; strip-lighting and sunlight appear to be the worst. But, the paramedics best trick is to shine a pen-torch in my eyes to ensure that I don’t have concussion; fair-play to them, they are, after-all, just doing their jobs, but the pain!! OH THE PAIN!! — I think I’d rather cope with an undiagnosed concussion than face one of those torches everytime…it’s getting so bad that now, I physically start to shake as soon as the para’s pull one out of their pockets. Then there’s the fact that I really struggle to follow conversations, answer questions or do much of anything really. I feel like I’m sitting in a bubble most of the time – a very special, pain-filled, torture bubble.
Once, I’ve come out of this a bit further and most of the symptoms settle down slightly, I still have really bad noise and light sensitivity and feel really unsteady, then the biggest question is how to get home. Most of the time, it’s a tube ride, but this is like a torture chamber – moving trains (that I really can not follow with my eyes ‘without tossing my cookies’ on the platform)- never mind the ear-shattering roar of the train as it pulls in and out of each and every station or even as it hurtles along the track and finally, the strip-lights – those on the platform and on the tube – I spend the majority of the journey staring at the floor with my hands pressed over my ears and my eyes shut tight. — but, no matter how bad this is, I prefer it to getting carted off to the hospital to waste 6 hours there for them to tell me that there’s nothing that they can do for me. The worst hospital visit I had, was when they chose to discharge me at 3am!! after admitting me at 5 or 6pm!! 3am in the centre of London, with a raging migraine and trying to find a way home…
The worst migraines for me are those that come with no warning; not enough time to get myself somewhere safe before the inevitable black-out. I live in terror. What if’s plague my life. What if I collapse in the road? What if I had been close to the edge that time, and I could’ve ended up under the train? What if my work finally get fed up of all this and fire me? What if my husband has enough and gets fed up of having to bear the brunt of my attacks? What if I’m on my own with my 2-year old and an attack comes out of nowhere? What if I actually do myself some PROPER damage (that time with the glass, could have been so much worse)?
Don’t get me wrong, I’m thankful to finally have a diagnosis and I live in hope that my meds will get sorted and that days or weeks like this will become fewer and farther between – but for now, just getting through the worst of the attacks takes everything I have and more, and sometimes, just sometimes, I’m left wondering, how much more I can cope with or how much more I have left to give…
This is my story; thank you for listening, and I hope you understand…