It seems I inherited a ‘migraine brain’ from my Mum and Dad – both of whom get migraines that I remember wiping them out at various points when we were growing up. You’ve got to love genetics – my brother got music, I got migraines (bet you’re jealous Andy!).
I pinpoint taking the pill in my twenties to be the thing that awoke the beast, though looking back I had migraines way before then but just didn’t know what they were, particularly as they are often different in children and teenagers than in adults.
I had normal migraines (the ones that build up and then stop after a day or so) for a few years, then I noticed that they were taking longer and longer to resolve (several days or even a week). After a time they were running into each other, so as one was ending a new one would be starting. It was a continuous cycle that left me feeling exhausted and helpless.
Over the years I did so much research and explored all kinds of possible triggers, from the obvious (e.g. stress, diet, sleep) to the obscure (e.g. the osteopath found that I have one leg slightly shorter than the other so I wear special insoles; it improved my posture but not the migraines. I also got a sleep-clench inhibitor from a migraine-specialist dentist – a weird tooth device that’s shaped like a lego brick and makes it very difficult for me to say ‘sausages’ – it stops me grinding my teeth and relaxes my jaw but hasn’t stopped the migraines).
I did an exclusion diet where I ate and drank nothing but brown rice, white fish, coconut milk and water for four weeks – it made very little difference (except that I didn’t enjoy mealtimes for the first time in my life!). I reintroduced most things but still don’t have alcohol, coke or citrus (I never liked tea or coffee – common triggers – so nothing lost there). I miss cocktails and prosecco but I’m very glad that chocolate wasn’t one of my triggers 🙂
I went through two rounds of person-centred counselling to see if there was any emotional or psychological element that I needed to deal with – I learnt a lot about myself but it made no difference to the migraines.
I prayed and wrestled through every aspect of my faith. Countless people prayed for me and my situation and any possible thing that could be contributing to the migraines but nothing changed (there’s plenty more I could write about this – I think I’ll save that for another post).
I engaged in CBT to work out ways to manage the day-to-day reality of not being able to live life the way I wanted to, to manage pain and to manage the guilt of feeling that I’m letting people down – it helped me to manage it better but didn’t change the migraines.
I read websites, journal articles, magazines, blogs, forums, everything. I talked to people I knew. I talked to people I didn’t know. I found out as much as I possibly could and I tried as many recommendations as I could. I also looked into every psychological theory and technique I could get my hands on (as I was training or working as an educational psychologist for much of the time there was plenty to be going on with). Then I took a complete break from the searching in case I was over-doing it and making the migraines worse by looking too hard to find a cause and/or a solution. But no, no difference.
Amongst others I visited two osteopaths, three orthodontists, a podiatrist, life-style advisors, dietary advisers, spiritual advisors, alternative practitioners, countless GPs and a neurologist. Everybody had something to add but nobody could give a coherent explanation of what was happening or what could be done about it. I ended up overwhelmed and confused by conflicting advice, but I also felt that I had to give everything a try, just in case.
I went through all sorts of tests and assessments, but nothing showed up. I had a brain scan and received the best letter ever – “the patient had a CT scan of the head and it is reported normal”.
I tried different lifestyles but the migraines were no different whether I kept myself busy and distracted or I rested and did nothing. I did all the things that I could think of: I did fun things with friends, I knitted, I baked, I meditated, I journalled, I prayed, I practiced relaxation techniques, I did yoga, pilates, massage, swimming, spinning (just the once!) – nothing made any difference.
I kept food diaries, sleep diaries, headache diaries, exercise diaries, mood diaries – I recorded everything you could possibly think of, but there was no pattern.
I tried every painkiller available. I tried nausea and/or dizziness medications. I tried triptans (migraine abortives). While some medications gave temporary relief none solved the problem and I had to limit my intake so I didn’t become dependent and/or develop medication overuse headaches. I even tried several months with no medication at all just in case I was reacting to something. Still no difference.
I also tried just about every vitamin, mineral, herb and supplement in Holland and Barrett, just in case. Some made a small difference, most just did interesting things to the colour of my wee.
After several years my mood was affected and I was diagnosed with, and treated for, depression, which was fine but it didn’t recognise or deal with what I now know to be the underlying problem and the cause for the depression, which was that I was having continuous migraines and it was making my life very difficult.
In desperation, I nearly went down the route of painful and expensive reconstructive dental surgery as I’d heard it had helped a few people and I’d spoken to a specialist dentist who thought it would make a difference. In the end it was just too much of a gamble.
I’ve never had the courage to add up exactly how much I’ve spent over the years but I know it’s well into four figures.
Eventually the neurologist diagnosed migraine with tension-type headache and prescribed flunarizine as a preventative treatment, which worked fairly well at first. I had one or two bad migraines but was mainly migraine-free. It was the most wonderful feeling to just be able to get on and do things without having to make a conscious effort all the time and without having to push myself to the limit every day. I was able to do a proper day’s work, to see friends, to have trips out; I felt like I’d finally got my life back.
At first it was so good to be free of the migraines that I didn’t notice the side effects. They were milder at first, but after a good while they were becoming more and more marked. If I’d been looking out for them I may have spotted them sooner, but the leaflet was in German (it’s not licensed in the UK) and I’d been told there were no side effects (though it was a very different story later on and it turns out I had a lucky escape).
In the end I was sleeping for at least 12 hours a night in such a deep sleep I couldn’t wake up for anything. I had to stop for naps several times on my way to and from work. I felt like my brain was in a fog and everything was in slow motion. I’d had one or two migraines, though I hadn’t recognised them straight away as they were mainly the dizzy and neurological symptoms rather than the headache that I would have expected. There was a possibility that I’d need to increase the dose but I was growing concerned about the side effects.
The last straw was Christmas 2013 – I didn’t feel fully awake for the whole of the Christmas holidays and was so disappointed because I felt I’d missed much of my favourite season and valuable time with both mine and my husband’s families. After lots of discussions with various people I came off the flunarizine in January 2014. I felt more alive even after two days, like I was coming out of a deep, heavy sleep, but it took a a long time for it to fully get out of my system (apparently it has a half life of 18 days so that’s a looong time).
The first few months of 2014 were ok, the flunarizine was still working on the migraines but I was coming out of the stupor, so it was a good balance. But sadly in March the first full migraine struck, and the pattern started again – they got closer and closer together until they all rolled into one.
It was time to take some serious action…
Next installment: London, Baby!
Chronic migraine – what’s it all about? See first post: My Brain BSOD