Flashback: The almighty botox backfire

Originally posted October 26, 2014

Having reached the bottom of the barrel in terms of my options, I finally gave in and agreed to botox treatment for my migraines.

What the? I hear you say. Isn’t botox for wrinkles?

Well yeah, but it does actually have medical uses too, and one of them is in treating chronic migraine.

The theory, I know now, after speaking to a heap of people who have been trying to put me back together and reading all the “what can go wrong” type information, is that if your chronic migraine is caused by tension in the muscles in your head, neck or shoulders, by paralysing the crap out of them with this incredibly deadly toxin your migraines will stop.

It only works for maybe half of the most severe of chronic migraine sufferers.

You have to have tried and failed at least three other therapies and have more days than not in a month dealing with headache to be eligible to try it. (Or at least for it to be Medicare rebatable). I qualify.

One thing expert lord high doctor neglected to mention *before* he shot me up with this stuff… it might make the migraine worse.

Normally with a treatment like this, I expect to have meeting with the specialist, get all the information, then go away, come back another day for treatment. As I have a bit of a problem with decision making I tend to be unable to make simple yes/no decisions, particularly when pushed or tired – complex decisions, analysis, detailed discussions, creative decisions totally fine, but there’s some part of my brain that either got damaged or is constrained by the migraines… I talked about it way back in the first post on my broken brain issues. So if faced with a yes/no decision and I have what I call a decisionfail – my brain stops, I have default decisions and other coping mechanism, and one of them is “say yes to whatever the doctors want you to do”. I have great doctors, it’s not normally an issue.

This time we rushed through background, and he says “Well, I think we’ll just go ahead with the treatment. You don’t have a fear of needles do you? That’s the only thing you need to worry about… ” and then after some more BS about how good he is the only this he mentions as a possible side effect is ‘site pain’.

Botox was rapidly injected between my eyes, at the end of my eyebrows, at multiple points along the hairline, in the temples, jaw, then in lines going across my head, down to my neck and shoulders. In other words, a crapload of botox. One injection at the back of my head hurt like hell, a couple drew blood, but it was ok in the general scheme of things I get exposed to.

AFTER when I came out to reception to pay the excessive bill (thank Gough for Medicare and the Safety Net) I was given the obligatory patient information sheet about the toxin that had already been injected in to me, and told I should read the sheet, especially the part on chronic migraine. So not paying attention was the Associate Professor that he marked the paragraph on dosage, as opposed to the side effects.

Here’s the actual side effects information, on the other side of the page.

Guess how many I got?

Well I didn’t get pneumonia or the drooping eyelid. Or the difficulty in swallowing, although I’ve had that before and it’s not fun, so I’m happy about that. I did get  site pain, muscle pain, neck pain, jaw pain, itching, skin pain and extreme sensitivity of the skin, tenderness, weakness, inflammation,  swelling, bleeding, bruising, constipation, worsening of migraine and a few things not on the sheet like fevers.

I had the botox treatment around midday on Thursday the 2nd of October. It felt a bit odd, I had some bleeding and bruising in places, but it was ok for the rest of the day.

Friday it was uncomfortable, noticeably so. By Friday night all of my head and neck was painful and sensitive to the touch.

Saturday morning when I woke up it was not only painful and sensitive, it was *hot*. By lunchtime I was going hot and cold. I read the sheet. The pain and sensitivity stuff was on there, but the fever wasn’t… I went to hospital.

Got seen by the Director of the Emergency Department because of course all the other doctors are like ‘botox for chronic migraine wtf?’. He was pretty sure it wasn’t botox toxicity, sent me home with orders to take it easy, call the lord high specialist if still not right after the long weekend.

Called the specialist. In the most condescending manner possible, he says to me ‘Oh yes this happens. Didn’t you read the sheet? Goodbye Kathryn.’ And hung up.

The skin pain, tenderness, and sensitivity that had me unable to put my head on a pillow or sleep eventually died down down after about 10 days, but the underlying migraine – this one started on the 19th of August and won’t break no matter what we throw at it – has gone from a pain average of 6 out of 10 that was being well managed with Norspan (opiate) patches to a pain average of 9 that isn’t being well managed at all.

I’ve been in emergency purely for pain management twice since the botox treatment. For someone with an opiate patch on their arm and with drugs like oxycodone at home, going to emergency means really bad.

I allow myself an hour of every day to just sit and cry.

And. I. am. not. coping.

I give thanks always for my amazing GP who is doing her best to deal with the latest ‘abnormal’ in my ridiculously thick file.

Quick update: Saw my normal neuro after 3 weeks of this nonsense who has doubled my opiate patches and referred me to yet another pain clinic, but I’m going to be this bad until January… and there isn’t really anything anyone can do. Have cancelled my graduation, and will be hiding from the world until then.