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Tuesday, 12 August 2014

Family :: the ultimate F Word

I don't get on with most of my family. Let's just say that I'm kinda the black sheep. I don't live the kind of "mainstream" existence that they do, I'm not afraid to have my own opinions. I'm just not like them. As a little kid I dreamed of the day I'd find out I was adopted and be whisked away by my real family, who in my head were quirky vegan hippies living in some kind of commune near the sea. It never happened.

But last week, I met up with my older cousin D who is over here from Canada for a break. We haven't seen each other since I was a tiny kid and neither of us really remember meeting so it was sort of like we were meeting for the first time, as strange as it sounds.

Anyway, to cut a long story short, after a normal conversation went off on a tangent, we discovered that we have a whole lot in common, both have some mental health issues that our families find it difficult to understand. I can't begin to tell you the warmth I felt in the pit of my stomach, the feeling that somebody finally understood me. I've found a fellow black sheep within my family, the first sign that maybe I do share some genetics with the rest of the strangers I call family.

It's fascinating, the things we can go our whole lives not knowing about our family. And now, I feel as though I've got this super tight bond with him and I wish we'd found it sooner so that neither of us had to feel so alone for so many years. It's definitely made me feel more positive about being open about my mental health issues. If D and I hadn't been open with each other, we never would have discovered our common ground.

Sunday, 10 August 2014

Living With Chronic Migraine :: and getting Botox!


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Headaches. Everyone has them, right? Some unlucky people also get Migraines, the big bad bully of the headache family. And some seriously unlucky people have Chronic Migraine, a condition that involves suffering 15 or more days of Migraine symptoms a month. That's what I want to talk about today.

I had my first Migraine when I was ten years old. There were bright flashing lights spreading across my vision, a spear of pain in my temple and I felt as sick as when I'd eaten far too many sweets after Trick or Treating. My Mum gave me some painkillers and sent me to lie down in a dark room. This was the beginning of a horrible cycle.

I got many more migraines throughout my childhood and teenage years but it wasn't until I hit my twenties that things got really bad. The Migraines were becoming increasingly severe and more and more frequent. Eventually, my Neurologist (who I was already seeing for a seizure disorder) diagnosed me as having Chronic Migraine.
The International Headache Society defines Chronic Migraine as more than fifteen headache days per month over a three month period of which more than eight are migrainous, in the absence of medication overuse.
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And then I found out that my Migraines had become "Intractable", which I didn't even know was a thing.

And just this week, I received a copy of a letter from my Neuro to my GP that said...
that my "Headache Disability" (seriously? I never heard of that before!) is very High. It actually feels kinda good to have the pain I'm in recognised by medical professionals, you know?
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 Over the last five years, I've been working with my Neurologist to find some way of controlling and reducing my Migraines. I've tried four different preventative medications.
The first one, Amitriptyline, a tricyclic antidepressant worked wonders except it turned me into a psycho zombie.

The second one, Topiramate, an antiepileptic medication made me paranoid and I felt and acted like I had cotton wool between my ears rather than a brain.
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The third one, Epilim, another antiepileptic, made me suicidal.

And the fourth one, a heart medication called Verapamil just didn't do anything for the migraines but made me super dizzy and made my blood pressure plummet.

Trying and failing with four preventative meds meant that I was eligible for a fairly new treatment called Greater Occipital Nerve Block, which involved injecting a mixture of steroids and local anaesthetic into the Occipital nerves at the back of my head. It worked. Kinda. And the fact that it was fairly short lasting meant that I was offered Botox. That's like the holy grail of the Migraine World.

Anyway, I got my first set of Botox injections last week and I can tell you that it hurt like a motherfucker. There were 31 injections into my forehead, scalp, neck and shoulders. Apparently I won't feel any benefit from it until after the second set of injections in November. But I'm trying to stay positive and remember that the Botox will eventually kick some Migraine arse.

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 In the meantime, I'm just going with the flow, living life with an average of 24-30 days of pain each month. Some days, it's almost impossible to get out of bed, to do the housework, to go shopping and do the things I want / need to do. I get super irritable, snap at my girlfriend and my parents, avoid my friends and generally become a social recluse. There are times when I struggle to think through the pain, cry because every movement sends pain shooting through the left side of my head. Yeah, it sucks but I'm so bloody thankful that I live in the catchment area of one of the best speciality Neurological hospitals, that here in the UK, my treatments are covered by the NHS (the Botox treatments alone would cost me £600 each if I were to pay through a Private Hospital). I'm lucky and I know it.

Anyway, I just wanted to get all this stuff out there. I mean, Migraines aren't something people talk about a lot. People tend to play down the severity of their pain, get sick of people thinking that Migraines are "just headaches". Migraines are a severe Neurological condition and I wish there was a way to raise more awareness, make people understand what it feels like to live with constant pain. I know from experience that employers can be very unsympathetic when it comes to employees taking time off due to Migraine. They don't understand that it's so much more than pain in your head, that your whole body is undergoing a barrage of symptoms. Vision loss, nausea and vomiting, dizziness, faintness, numbness and tingling, lack of co-ordination, slurred speech, even loss of consciousness in rare cases. I could never make my boss understand that one migraine can last more than a day. He used to say to me, "but you've been to sleep and woken up so it must be a new migraine not the one from yesterday." It really drags you down after a while, makes you feel like nobody understands you.

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But there are millions of people out there dealing with Migraine and I would love to connect with anybody who understands what I'm living with. So do any of you guys get Migraines or other types of Headache? What are your experiences when it comes to bosses? Feel free to share your experiences below xx