'Desperate times call for Botox.' – not-so-ancient proverb

I've said before that I wouldn't use Botox for my migraines because I didn't like the idea of putting a neurotoxic protein into my body. Botulism is a horrible infection and it seemed ill-advised to tempt fate by introducing it deliberately.

However, that was before my current daily medication stopped working. I realised that I put a lot of literally mind-altering medications into my body. I also started getting a couple of migraines a week again so I got desperate. My neurologist suggested trying Botox injections because I had tried a lot of pharmaceutical medications and many hadn't worked for long.

I got 33 infections around my head, face and neck this week. The neurologist was excellent. Some of the sites hurt a lot, but she was very quick. For about 24 hours afterwards my head and forehead felt lumpy and tender. Three days later, that's all gone down now except one bump above my left eye, which I think is only noticeable by me.

It should take about a week to start to feel the effects of the Botox in terms of muscle relaxation and paralysis, and in term of migraine reduction. Often people need two rounds before seeing good results. That means it's about a four month process because you can't get a second set of injections for at least three months (those are the Medicare rules in Australia). 

As I write this, I'm (hopefully) recovering from this weekend's migraine and looking forward to this treatment having some effect. I'm also very grateful that I live in a country that approves and subsidises these kinds of treatments.

Image from: http://sd.keepcalm-o-matic.co.uk/i/keep-calm-and-let-botox-help-you.png

'Necessity is the mother of invention.' – Plato

This morning I created this migraine diary:

I probably could have downloaded one or found an app, but this one is tailored to my particular symptoms and treatments. It also has my favourite colour for the highlighted rows.

In the past when I've tried to use an app, I often forgot to log in everyday to track what was going on. Over the past few months I've been recording migraine occurrences on a paper calendar. I've got pretty good at remembering to make a note each day. Then for the past week I've been also using a form similar to the one I made that my new neurologist sent me. This is to give her an idea as to whether I qualify for botox injections or not.

Now that I'm in the habit and have a chart that I like, hopefully I'll keep using it. 

Let me know if you want a working copy of the migraine diary for yourself.

'Find a place inside where there's joy, and the joy will burn out the pain.' – Joseph Campbell

Part of any chronic illness is adjusting your self-image to the new normal. I've finally come to terms with being someone who needs to monitor their diet, sleep and stress; who will need to take medication for life; and who will have to adjust work and social commitments at the whim of the migraines.

Now I've been told by my physio that I need to accept that I'm unlikely to ever be completely pain-free (in my hip). This is devastating. That's meant that this weekend I've been adjusting my self-concept to someone who has health problemS [plural!]. I keep saying to myself in the back of my mind: I'm sickly (the opposite of healthy).

Couch Potato by Graela (Flikr)

This prognosis means that I won't be able to be as active as I want to be. I'll have to let my tennis membership lapse. I won't get into running, regardless of how perfect our local park is for running. I'll have to find low impact exercise to do: weekend hikes will be weekend walks, tennis will be tai chi, and kickboxing will be kayaking. It's easier to accept the activities that will be curtailed if I think about other things that I can do. That way I don't believe the pessimistic little voice in my head that says that I'll be a fat lump of a couch potato because I can't exercise. I'll prove it wrong!

The mother of excess is not joy but joylessness. – Friedrich Nietzsche

How much is too much? I've been wondering this for a few weeks now, particularly every time I get a migraine, which is about once a week at the moment. When I don't have one I tell myself I'll keep a really diligent migraine diary for another month (making a total of two months reliably recorded) then go back to my neurologist to adjust my medication. At other times, when I'm feeling plagued by the latest migraine, I'm tempted to call him right then and book in.

Image from: http://erviluca.com/2014/03/05/

I'm also struggling with whether I want to continue on the current medication or not, which I need to decide before I see the neurologist. On one hand, I have very few side effects from it, and virtually none on the current dose. On the other hand, it doesn't seem to be working very effectively if I'm getting a migraine a week and taking 2-3 days off every fortnightly pay cycle. If I raise the dose again, I'm worried I'll start gaining weight again (woo-hoo for big, fat side-effects!). However, if I go off it, then who knows how long it'll take to find another medication that controls them even a little and has manageable side-effects.

I'm also starting to contemplate treatments I'd never considered before: botox and ECT (electroconvulsive therapy). I'm feeling the emotional toll as well and wondering about support groups or seeing a counsellor again to help manage the despair, frustration and hopelessness that's creeping in.

Does anyone have any suggestions? 
(Please post in the comments below.)

Migraine To Do List

My Migraine To Do (and not to do) List

'Computing is not about computers any more. It is about living.' – Nicholas Negroponte

I've had a lingering migraine for over a week so yesterday I was trying to figure out why it won't go away. I've been getting plenty of sleep, not eating anything bad and continuing to exercise. Then I realised that the two books I'm reading are both ebooks. This means that even in my downtime (and while recovering from the migraine) I've been staring at a screen. I did a quick search and found these two potentially useful websites:

• Migraine Trust – this is a general fact sheet about migraine triggers but offers some information about computer use near the end
• Migraine Relief Centre – this blog has some useful tips about 'light induced migraines' and how to make screens less migraine-inducing

My course of action now is to read a paper book and limit TV watching so that my screen time goes back to a more manageable level. I think I'll also try to make one weekend day a 'no screen' day. That means writing will need to be on paper, no checking social media, no Skype and no TV.

'It is easier to prevent bad habits than to break them.' – Benjamin Franklin

During this week's migraine I noticed two things about my migrainey self, which I hadn't been aware of before. As with my other blog posts, the purpose of this one if to create a record for myself since I have a bad memory at the best of times, let alone when I have a migraine.

Firstly, I noticed that when I have one of those migraines that doesn't respond to medications, I often take a large number of drugs anyway. I think this is because I take some, then two or three hours later I'm still feeling terrible so I take something else, then another two or three hour later I'm not feeling any better so I try another pharmaceutical option. By bedtime I realised that, in my desperation, I would have taken the maximum dose of paracetamol, ibuprofen, aspirin, codeine and/or any other drugs I have on hand. Hopefully now that I'm aware of this I won't fall into the same pattern of sending good medication after bad, as it were.

Secondly, I was feeling very lonely during this week's migraine: alone in my suffering, ill-equipped to deal with it, and in need of genuine empathy and encouragement. Often during a migraine I'll wish my mum was with me. This time I needed something stronger, more effective. I went online to see if I could find a migraine support group or forum to join. I came across three likely-looking options. Once I started reading, I noticed that mostly they were filled with comments about all the different drugs people had tried and how crap migraines are. None of the people commenting seemed to have anything proactive or helpful to say. Even when sufferers posted questions (like where to find a good doctor), the commenters didn't address the question and only mentioned their own struggles. Maybe we're all selfish, us migraineurs; maybe that's understandable, but I don't think it's helpful. Now I'm looking for any support groups in my area that I could attend. Will a group of us in person be more supportive?