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Sunday, 6 October 2013

Let's talk about hating chocolate, and triptans, and other migraine things

One of the most horrifying things about the whole migraine issue for me is that I've started detesting chocolate. The reason is simple: before the pain hits, I crave it intensely. If there isn't any chocolate around, I'll grab anything with sugar, but chocolate is my go-to fix. It means I've started to associate chocolate with an amazing amount of pain, and when I'm not craving it, I detest the thought of it. This is not a good situation. Yesterday, I found out why I have the sugar cravings, and a whole bunch of other things that hasn't come up in my research. 

I had the Migraine Clinic appointment yesterday. Thursday and Friday I'd been totally pain-free, so the end of the week was pretty good. On the way into the clinic, I had another attack. I'd known it was coming since Friday night; that awful taste of blood-soaked pennies had coated the back of my throat and mouth since about seven o'clock. 
When I found myself snarling mentally at the people around me at the station I knew it was about to hit. Mandy and Stacey were with me, and Mandy had the joyous experience of seeing a migraine settle in and start bitch-slapping me behind the eyeballs for the first time. Stacey has seen this a lot, and she's seen it worse. Mandy looked horrified. There must be something pretty bizarre about watching someone develop smudges under their eyes in the space of minutes (I've always been on the other side, which isn't much fun either) and start slurring their words/be unable to string a sentence together. While I wasn't quite channeling my inner zombie-panda chick - I didn't look like an ambulatory corpse for once - I didn't look healthy either.
On a mental level, it was so much worse for having two pain-free days. Two days out of two weeks might not seem much, but it gives you hope that you'll stay pain-free for a bit longer. Migraine is like the bully in the school-yard; the one that walks past and breaks your toy for no good reason, and then doubles back and rubs sand in your hair. Because it can.

So we went in to see the doc. Stacey came with me, because I wasn't sure how much I'd remember.

He showed us an anatomical model and asked a lot of questions, and did a lot of explaining. I talked him through the Botox I'd had previously, which now appeared to have stopped working.

What I learned

Medical science has no clue as to what causes migraines. There are numerous theories, and very little fact. They know it's a disease. They can track and expect certain reactions and changes. There is no cure. The test and possible operation (if the test is successful) is a management system, not a cure.

The nerves that come out of the eye-socket, and are connected to one at the back of the head swell to up to 300 times their size. They are inflamed. This also explains the times I channel my inner exotic-fish look and my eyelids swell up; the tissue in the eyelids is affected and swells as well. (I've had more than twenty years of medical professionals telling me this is an allergy. To be fair, it looks like an allergy. Still. Not impressed.)

I'm apparently a Phase 2 sufferer. (Yay, me. Because phase 1 is so ordinary.) What this means is that the nerves coming through the eye-socket have told the nerve at the back of the head to wake up and join the party. A couple of weeks ago I had an explosion in the back of my skull that knocked me over. I had a few seconds of thinking I'd either been shot or something had hit me. I had a lot of trouble thinking and speaking for the rest of the morning, and ended up at my doctor, who gave me triptans. More on the triptans later, but that was apparently the moment the nerve at the back of my skull joined in the fun. 

Everything I took as a warning sign is actually part of the migraine. The craving is caused by an insulin dip. That awful taste, mood swings (in my case, severe irritability), photosensitivity - this is already me having an attack. I just haven't reached the pain part yet. Ugh. Since those things can start up to two days before I get to the pain part, this means I'm almost permanently in migraine phase. Bloody. Hell.
As I told Doc, I can live with that. As long as I don't have permanent pain, I can function. I will happily look like I'm wearing Halloween make-up for the rest of my life if it means I don't want to curl up in a dark room and rock myself to sleep.

Triptans can cause migraines. The first one will knock back the pain, but most suffers will end up with a further, more severe attack a couple of days later. (Yep.) Whatever they do, these little pills actually cause more damage than they stop. I stopped taking them because they disconnected me. I felt like an automaton, and I hated it. It's no use being pain-free if you feel like a robot. 
I also had a tightness in the chest when I took one. I had a couple left in the container, and I've been ignoring them. The doc asked me about the chest tightness. Then he explained that if I took another one, I'd probably have a heart attack. In about 5% of patients they cause the heart to contract. Taking more than three could kill me. Since they were prescribed, I've taken about 5, so it's sheer luck I'm here to write this post. 
Stacey turned to me and held out her hand. I put the container into it and she dumped the contents into the dust bin behind Doc's desk. (The fact that I'd told her last week that if I die from a heart attack at least I wouldn't have any more migraines may have had something to do with this.) 
I am no longer taking triptans, because I sure as Hades don't need more bloody migraines.

Starting the test
The Botox I had previously was administered in little pockets around the forehead and eyes.

The Botox I had for this test went straight into the muscle around the nerve. A little on the left (so I don't look lopsided), the majority on the right. As everything is inflamed and swollen, this stung a great deal. Stacey held my hand, and I can tell you I squeezed pretty damn tightly.

Then I sat up and got more Botox in the back of my neck. This was distinctly unpleasant. The back of your neck and skull is vulnerable; letting someone stick a very sharp needle into it goes against nearly every instinct I have. It also bloody hurt.

It should take 5 days for it to affect the muscles. Part of me hopes it will kick in faster; I still have the migraine that kicked off yesterday. I'm functional (I can walk and talk), and as long as it stays at this level I'll cope, but constant pain is draining. There is also the very real fear that it will escalate; that I end up with another episode of blindness or unable to move without  wanting to scream.
If (and at the moment this is a very big if) there is a minimum 50% improvement in the severity and frequency of the attacks for the next couple of months, the next step is an operation to remove the muscles concerned. I have no clue if I'll get to that stage. If I do get to that stage, I have no clue how I'll finance it. 

But there is hope for a normal life for the first time in a very, very long time, and I'm clinging to it. 
And if it works, I can stop hating chocolate.