Migraine Hell Week: This is what happens when the Botox wears off

So last week, the Botox I'd had for the migraines wore off. In one of the worst cases of incredibly bad timing my body has EVER come up with, it decided to respond to this by sending me into pain convulsions, swiftly followed by an episode of blindness, in the middle of the working day, at my desk.

Now, the guys I work with are aware that I get migraines. They've seen me with mild ones. I normally know when it's going to be bad, that I need to get home and into the dark, and I'll make sure I leave before that happens. I thought this one was going to stay mild. However, it ramped up so hard and so fast, that in the 90 or so seconds of me thinking I needed to go home and taking a couple of painkillers for the trip, I was suddenly in so much pain that I couldn't walk, talk or think. I sat in my chair and trembled.
My team thought I was having a seizure. I suppose technically I was, but it was pure pain. There's not much else to it.

The shaking thing isn't new. I get it when it's a bad one, but I'm usually curled up in the dark and by myself, in private. If I whimper and cry there's nobody else around to witness it, to see that moment of horrible vulnerability. Having it happen in a public setting, with people I work with daily, was a moment of personal humiliation I'd like to never repeat.

My boss sat down next to me in the middle of this and asked if I needed an ambulance. I'm very grateful they didn't get one; an emergency room is no place for someone in the middle of a severe migraine attack. It's bright, it's loud, and the smell is overpowering. I don't even want to think about the agony involved. I couldn't answer for a while; the pain had locked my vocal cords. All I could do was a raise a hand so he knew I was conscious, and let me tell you, I've rarely wanted to pass out so badly.

Most of what followed is still broken into jagged little moments of memory. I know that I was half-carried, half-staggered into a dark office. I know I was crying. I know that shortly afterwards I lost my vision completely, and came pretty close to panicking; it's one thing having that happen at home. It's completely different in public, where you are vulnerable to everyone and everything around you. Thankfully, like the last time, the blindness passed in a few minutes.

They sent me home in a taxi. I stayed at home the next day with a pounding, throbbing head. I felt better that evening, sat in the lounge with Stacey, and managed to do the pain jitterbug all over the lounge carpet. No blindness this time, and Stace managed to get me to lie still and breath. It was a short episode, but it hurt. The migraine went from pounding to ultra-sharp; it felt like someone was trying to ram a long needle into my brain.

I felt okay the following morning and went into work. I lasted three hours before the panda-eyes of doom appeared and I got the shakes again. And then I lost my words. It's an interesting side-effect, that one. You lose words that you use every day. Your mind tries to find them and they just aren't there any more. As a bonus, you start slurring. The slurring starts off as a slight burr; and ends up sounding like you've just made friends with several shots of good-grade whiskey. The look of horror on my boss's face was impressive.
I refused a taxi - the previous episode had proved I'd get home faster on the train - and Stace met me at the station in case I had another pain-jitter attack. It was close, but I managed to not have it until I was back home and in bed.

Rinse, repeat, until Saturday, when I went into the migraine clinic again for more Botox, and an assessment of the diary I've been keeping.

Sunday I had ten hours pain-free. Today I've got a minor episode - functional, but not happy. It takes about 5 days for the Botox to kick in, so hopefully it speeds its merry way through my system.

Doc reckons I'm a good candidate for the operation which removes the muscle the nerve runs through at the top of the eye-socket, and moves the nerve at the back of the skull. He said I could reduce the migraines by between 80 - 90%, so there's hope that I can get my life back. I'm thinking about it, very hard. Apart from the issue of general anaesthetic and the risks of the op itself, the main barrier is cost. The NHS doesn't cover this, the op would take place in Berlin, and the charge is £7000. Seven grand is a LOT of money for me, particularly as the cost of Botox and a hefty dose of painkillers on a monthly basis has eaten up just about all my savings. This disease is expensive in every respect.

But seven grand to get my life back would be cheap, if I had the money. To be able to make plans to go out with friends and not cancel at the last minute. To be able to eat without throwing up from pain; I've lost a few kilos in the last week, and it's not a healthy weight-loss. To not walk around looking and feeling like an escapee from the Walking Dead make-up trailer. To not wonder just how easy it will be to one day miscalculate the pain-pills and accidentally overdose. You don't track too well with constant migraine; and if the pills don't dent it the urge to take more is huge. To be able to write, and work, and be pain-free for at least some of the time. To never see that look of helpless shock and horror and pity on the faces of your friends and colleagues again. To stop thinking dying might be a relief.
Yeah, seven grand - probably closer to eight if you factor in the flights and the stay in Berlin - it would be cheap.

A moment in darkness

I haven't blogged since The Weeping Butcher incident, mainly because it's been a couple of weeks of excruciating migraine attacks, and trust me, you don't go near a computer screen during a serious one of those.

Every few years I seem to go through a cycle of increasingly severe attacks. It happens at various times, in various seasons, and it doesn't matter what I've eaten or drunk. In fact, looking back over the migraine diary, the only pattern is that there is no pattern. It's annoying. It makes my OCD hurt.

Straight after writing the butcher blog, I had the worst attack I've had in years. About thirty minutes into it I went blind. Not the white-out that I'm used to, where all the colour bleaches out of the world and I know it's time to pass out. This time, everything went black. No pretty coloured explosion or flashing lights either. Just straight to darkness.

It happened so unbelievably fast. One minute I was whimpering about pain at my cousin, and twenty seconds later I couldn't see anymore.

Stacey, bless her, helped me up the stairs and into my bedroom. I crawled onto the bed and waited.

I didn't panic because I'd heard of it happening to other sufferers, so I knew it was temporary. I know that because the blood vessels expand during an attack and put pressure on facial nerves that is the cause of the pain, and this particular attack was lodged behind my eyes, so I can assume that the same pressure impacted the optical nerves in some way. It was still pretty scary, and if I hadn't done the research I'd have been a screaming mess, but there's a big leap between reading about something and experiencing it. There is no way to prepare yourself for something like that. You can understand it intellectually, but having it actually happen? You end up clutching to the knowledge that it passes, that it will end, because other people deal with this. You cuddle up to it like a teddy bear, and hope to hell you aren't going to make medical history by being the girl that doesn't get her sight back.

The blindness passed in around twenty to twenty-five minutes or so. The actual migraine attack lasted 4 days, which is not my idea of fun. The first night was the worst. Couldn't sleep. Couldn't talk. Kept asking Stacey to punch me out (she wouldn't). I spent the night rocking gently with the lights off, praying for it to stop. I didn't particularly care if it killed me at that point, as long as it stopped; I was fantasising about someone just drilling a tiny hole over the eye socket to relieve the pressure. It made a week in the hospital with a broken leg look like a kiddies tea party.

The problem is, I can't even hide the mild ones - one of my personal symptoms is severe discolouration under the eyes. Mild attacks are light brown. More severe ones turn blue-black. During this particular episode, I looked like someone had used me as a punching bag.
It took until that Thursday before food stopped making me gag and I could eat. Friday was good. I no longer looked like Zombie Chick on Acid, and I could eat. Saturday was brilliant. Sunday I had another attack.

I decided to hell with it and called the nurse for a Botox appointment. I had it done the last time I had a cluster of attacks like this, and I was migraine free for a year. I have no idea why the pain relief lasts longer than the muscular effect, and the scientists are still trying to figure that one out. Karma obliged by letting me get some savings together, with a lot of help from others. (The jabs are pretty pricy, and it's £250 that I'll never see again, but it's still cheaper than spending a fortune on pain-killers and losing days.)

In the past week I've had two. The first I got over in about 4 hours, because I got a can of oxygen off of Amazon and used it. It helped. Didn't cure it, but I reckon it shortened it.

Yesterday I travelled up to Bournemouth, and heading back on the train I could feel the next one start. No oxygen this time, just take the tablets and sit very still and get back to London. Thankfully the last one was pretty mild, but I keep thinking back to that moment I went blind, standing in my kitchen.

Since  the start of December I've lost almost 3 weeks of my life because I just couldn't function, and I cannot carry on like this. I have an understanding boss, and brilliant family and friends, but that's not the point. Being unable to move for 4 days of my life is not an option. Going blind in my kitchen when I can prevent it, is not an option. Life is too damn short to spend it whimpering in a dark room.

At the moment, provided the snow doesn't mess things up, I get the jabs tomorrow. I can't wait.