'Heaven have mercy on us all… for we are all somehow dreadfully cracked about the head, and sadly need mending.' – Herman Melville

This week I'm trying to have mercy* on myself. When I've been struggling to open packaging instead of doing it with scissors, or trying to do another household chore before some self-imposed deadline while exhausted from my latest migraine, or berating myself for all the things I should have got done at work if I was more efficient at helping students and leaving time for paperwork, then I hear a little voice cry, 'mercy, mercy, mercy.' It's like when we were young and would get Indian burns (before political correctness) or have thumb wars until someone begged mercy. It reminds me I'm only human; I don't need to do it all; the world's not going to end if I don't… and all those other mantras I've tried over the years.

I've also come to see my migraines as a cry for mercy from my over-firing brain. The Elimination Diet (and subsequent dietary limitations) are ways of minimising the brain's stress. Taking a nap or meditating are nurturing the brain when it starts to beg for mercy.

I don't know if this mercy mantra will last any better than the others, but hopefully like the others it will serve its purpose for a time. I will remind myself to be more merciful toward myself, remembering what I can and can't do, and that might spill over into being less stressed and judgemental about others as well.

* This idea of mercy, little seen in today's world, comes from a friend, Judy, who is writing a book about it.

'Mr Holmes, they were the footprints of a gigantic hound!' – The Hound of the Baskervilles by Sir Arthur Conan Doyle

Migrain-gnaw

The neighbour’s dog is yapping,

Someone’s phone is ringing,

A helicopter hovers too close, rotators pounding.

Sitting at my desk, working my way through inbox messages,

I notice a hunted feeling.

Could this mean my loyal companion is back?

For a second my vision blurs. 

I shiver.

Later, I am chopping carrots for dinner

When the hunter returns.

Ah, my loyal companion is back.

Now the room dims momentarily and a growling fills my ears, 

muting the TV news.

Suddenly,

The hound has my whole head locked in its jaws.

I can see no light,

I stare down its gullet. 

The pressure tightens,

pain stabs my neck, 

As it tries to rip my head from my body

With its predator death-shake.

I escape long enough to put down the knife,

Crawl away while it stalks my heals.

I hide for a time in the dark of the bedroom,

But it comes for me still,

Slathering for more.

'All you need is love. But a little chocolate now and then doesn't hurt.' – Charles M. Schulz

I'm doing two things this week which will hopefully help the frequency and severity of my migraines. However, the fact that I'm doing anything different does indicate that I still want control over them despite starting to come to terms with the chronic, unending, incurable nature of them.

Firstly, I'm starting an Elimination Diet today (this is a link to a helpful website, and here's another one) to see if there are any foods I have been avoiding that I could be eating and any that I should now be avoiding. It's been about seven and a half years since I was diagnosed with chronic migraines and first did an elimination diet. At that time I found it really difficult and stressful – all the meals I made were bland and repetitive, I lost lots of weight and had low energy, and I started cheating ('reintroducing' foods like chocolate) earlier than I was supposed to.

This time I have spent almost a week thinking about why I'm doing it, figuring out what didn't work last time, making contingency plans and devising many meal options. I'm doing it because I'm sick of feeling like crap; I don't know if an elimination diet cleanse will help, but I'm hopeful. What didn't work last time was that I didn't have any treats so my sweet-tooth and lack of will power meant I cheated with chocolate. This time I have a list of things I'm still allowed, and have splurged on some nice tea, fancy vegetable chips, fresh herbs for extra flavour and fresh fruit juice plus I have frozen berries for desserts. Finally, I've figured out that I can still make lots of meals with only minor alterations – risotto because I don't use cream and butter anyway, I'll do without cheese this time; veggie stir-fry without capsicum; red Thai curry with minor adjustments; quinoa salad; yam lasagne without the tomato sauce and cheese might be ok; homemade sushi rolls without the soy sauce or mayonnaise and the list goes on. They won't all be brilliant, but they will be better than the unflavoured rice and two steamed veggies I was subsisting on last time I did the elimination diet.

Secondly, this week I'm going to see my neurologist to see what he suggests I do about medications. I don't want to stay on Topomax unless he can assure me that being sick with various colds, infections and tummy bugs for the past eighteen months is not a side-effect. Also, ideally I would be on something less serious, but given how poorly I have been coping the last few weeks on a lowered dose (2+ migraines a week, missing weddings and other social engagements, barely being able to think straight sometimes at work, sleeping or in pain while at home spending 'quality time' with my husband etc.) I may just have to accept whatever will make life manageable again. I need to keep reminding myself: treatment plan not a cure. If I find a medication to go with the love and chocolate, I'll stick with that because the alternative is not a life I can live.

'I'm for truth, no matter who tells it.' – Malcolm X

Despite the realisation a few weeks ago that I would never find a cure for chronic migraines and needed to establish a good management plan, I find myself wondering more and more about what's causing mine. I don't know if this is more magical thinking: If I just find the first cause and fix that, then everything will be better. Since I was diagnosed with chronic migraines almost a decade ago, it's bothered me how unconcerned the medical profession is about finding the cause. As long as they're treating the symptoms (usually with medication), then that's good enough. I realised that even my current alternative therapists, chiropractor and acupuncture, are mostly about treating the symptoms and getting me through the migraine incident.

I feel there must be some underlying cause more compelling (and treatable) than inherited pre-disposition. Why do I have chronic migraines and my mother, grandmother and aunt only have one or two a year? Why does my body feel a need to react to stress with a migraine? Why when I don't sleep well or have a build-up of muscle tension do I get a migraine, but my husband just gets a little grouchy?

I've got some ideas of how I might be able to answer these questions for myself or waste money trying. 1) A friend suggested kinesiology by which she means applied kinesiology. Wikipedia, the source of all truth, says it's unproven and 'no more useful than random guessing.'
2) A few years ago a fairly sensible colleague mentioned hypnotherapy as being effective for an ailment she had. Wikipedia is more positive about hypnotherapy and even cites a 1995 study that said, 'The evidence supporting the effectiveness of hypnosis in alleviating chronic pain associated with cancer seems strong. In addition, the panel was presented with other data suggesting the effectiveness of hypnosis in other chronic pain conditions, which include… tension headaches.'
3) I could do my own literature review to read about migraine brains and what makes them different.
4) I  may try an elimination diet again to see if there are any new foods I need to avoid or ones I have been that I can now eat again.

This is probably another attempt to control and understand the uncontrollable and little-known.

'A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his migraines.' – Hippocrates

I have been falling off the less-screen-time wagon lately. After having a migraine yesterday and a severe headache all day today, I am clambering back on that wagon tonight. Instead of collapsing in front of the TV for a few hours before bed tonight, I decided to do yoga for some of that time. About halfway through the routine I felt my mind slow and the frenetic energy of my body ease. It was a wonderful feeling and validated why yoga is better than TV. I've come out of it feeling calmer and, I was going to say in control but that's not accurate, it's really more a feeling of ease with the present.

I have a theory that slower brainwaves, like being in a meditative state more than a stress-response state, is one way to reduce the incidence of migraines. I feel like too much TV gets my neurones firing and makes me wired, which is often how I feel before the lethargy, confusion and pain of a migraine sets in. I did a quick internet search to see if I could find anything on brainwave states and migraines, but I haven't found anything really legitimate and scientific looking yet. YouTube has many clips of 'binaural music', which supposedly 'entrains' deep relaxation or slows brainwaves and thus stops migraines. I'm not holding my breath that it's the magic cure we've all been waiting for, but I might try listening to them sometime.

I guess what tonight is about is breaking out of the easy routine, trying something potentially healthier and maybe learning something new about how my messed up brain works. I succeeded in breaking my normal evening TV-watching pattern, I did a healthier activity, but I haven't found what I'm looking for about the effects of alpha or beta brainwaves yet.

'Flying is learning how to throw yourself at the ground and miss.' – Douglas Adams

Right now I’m living between migraines. It’s like flying: when it’s working it feels wonderful and light and free; but when things go wrong it’s going to hurt. I’m getting about one a week and on the days when I don’t have a migraine, I am grateful and productive. At first I would be on tenterhooks anticipating the next fall (migraine), but that’s a waste of time and energy. This has helped me to be more present and appreciative of health, when I have it.

There’s a problem, though. My current prescription will run out just before I see my neurologist in a week or so. I’m hoping he will suggest some other medication so I don’t want to fill another repeat of the current one. I am coping pretty well on this lower dose with only a mild weekly migraine. If I go off all medication, I might go back to two or three migraines a week. Now cheapness and treatment are battling it out in my head. Which logic will win?

'To cast in it with chronic migraine was to die a thousand interests and aspirations.' – The Strange Case of Dr. Jekyll and Mr. Hyde by Robert Louis Stevenson

I had a realisation yesterday, which I need to record before I forget it – especially since it came to me in the post-drome phase. It occurred to me that I've been wasting my time and deluding myself by searching for a cure for my chronic migraines. I need to actually accept a long-term, healthy management strategy.

I should have realised this before because it's been years that I've had migraines. I've done the reading and know that we're not that close to understanding them let alone curing them. But this is why I go on a medication or treatment plan, feel well and have them under control for a year or so, then go off my meds. I've deluded myself into thinking the medication cured me and then I'd be ok without it. Now that I say it, it seems so obvious how dumb (naively optimistic?) I was being.

Have other migraine suffers realised this? Why don't doctors tell us the difference between cure and management? Maybe my various doctors, somewhere along the line, did say this or maybe they thought it was clear.

I am a little worried that there will be a (strong) emotional backlash when it actually, properly sinks in that I will never get rid of my migraines. The best I can hope for is an effective, ongoing treatment with few side effects. That's depressing, especially since this week's migraine caused me such anger and frustration at Migraines.

I read a book about managing chronic illness several years ago and I think it talked about some of this. The mental shift from illness-sufferer to chronic-sufferer with no hope of cure is a big one and can be very emotional. Maybe that's why I was shielding myself from it all these years.

My initial plan, when starting this blog, was to not only explore migraines and literature in an attempt to make things more humourous and manageable for myself. I was also going to go off the anti-epileptic medication and live a naturalistic, idealised life migraine-free without harsh pharmaceuticals. Part of my realisation is that, that is probably never going to happen. ('Not until you have a brain transplant,' my husband said wryly at dinner last night.)

I guess the take away is: migraines suck and always will so I need to learn (again/still) to live as best I can with them. Finding humour where it isn't obvious seems like a decent strategy at the moment (thanks husband).