This week is National Migraine Awareness Week and I would like to do just that - increase the awareness of Migraine. Migraine is not ‘just’ a headache, it is a very disabling complex neurological condition that the ‘owner’ has to learn to live with. Unfortunately, it is both the butt of jokes and can be the easy excuse for the work shy, which does migraine suffers and their families no favours at all. Everyone’s migraine is different.
As some of you know I am a migraine sufferer. I am fortunate in having seen some ‘top’ Doctors in my migraine career but the thing you learn is to help yourself. I thought my migraine started when I had an accident to my head in my first year of teaching. The accident ‘bruised’ my brain and left a small dent in my head. As I was living in London I was referred to Bart’s which In those days was a leading centre of excellence.
I learnt to live with the migraine, but it was life changing. I was more likely to develop migraine at weekends when I relaxed and if I had a lie in! I relied heavily on medication.
But what I later learned was that migraine can change. Some people tend to grow out of it but for me retirement brought worsening migraine. The consultant I was referred too, announced on hearing my story that I had inherited migraine. My father had been diagnosed with severe sinus problems, this is now thought to be what much undiagnosed migraine was called. So the accident to my head exacerbated it but I was going to have migraine for life, mine as a child was called ‘sinus problems too’.
I went through a particularly bad period where I thought I was going mad, I was waking with migraine each morning, I could happily have banged my head against a wall. It was awful and I tried to distract myself with sewing, knitting etc. I was on preventative medication, and had triptans which helped the pain when it was really bad. The frequency of the migraine improved but I felt zombie like and tried to work out what was causing this near constant migraine.
I came to believe it was other medication that I was prescribed for a gut problem...so each night I took a pill for that and each morning I had a migraine. So I started self medicating myself, ie weaned myself off the ‘gut’ tablets and hey ho the migraine improved.
I have always felt that my migraine was closely connected with what and when I ate. Low blood sugar, through eating a meal late will be much more likely to give me migraine than virtually anything else.
At this stage I attended one of The Migraine Trusts special Migraine Days (I went to York to attend one) where there are talks from a range of experts and I got lots of tips from this as well as realising that the day was a sell out, so lots of sufferers.
But Migraine is a real beast and just as you think you have nailed it, it can change to a different form. One morning I woke up without a headache but feeling as if there was a line down the centre of my body, I could not feel my left side at all. My migraine had always had intense head pain, including my hair hurting....and now I had no pain but seemed to have ‘lost’ half my body. My first thought was that I was having a stroke. The answer was the Migraine had now turned Hemiplegic. This was, and still is, quite scary. I usually get a warning, I get pins and needles in my left hand or more likely just my left lower leg bit. I rarely get the one sided thudding headache centred behind my right eye any more. The bad news is that the only medication I can take for such an attack is a massive aspirin dose, triptans are out. (In my case I cannot take the normal ‘stomach lining’ tablets to counteract the effect of the aspirin as these induce migraine just as the gut tablets did). So I have to learn to do the best I can and realise that some days I loose the battle...for some reason the body needs a migraine. Frequently this lasts 3 days, the lead up, the migraine and then the feeling as if you are recovering from an anaesthetic day.
I have always known that eating regularly - little and often- works or rather is essential. I am best if I eat / drink every 2 hours and getting through the night without eating leads to migraine. So this means I need supper, usually a bowl of cereal and I need to eat early in the morning. I have tried all sorts of things - cashew nuts, grapes, bananas.... but following a suggestion I have found a protein drink powder - really meant for bodybuilders - is just the thing. (I used to wake at 4.00 am and feel fine and then by 6.30 when I woke properly I would have a migraine. I suspect I ran out of fuel during that 2 hour period). I don’t much rate getting up and waking up enough to have a drink at 4.00am but if it means a no migraine day that is what I will do.
I have, for some reason, had a particularly bad migraine summer, from April to August I have had lots of bad days. It has taken those 4-5 months to try and find out which combination of factors has been responsible for this latest migraine cycle. It is rarely one trigger that is responsible. I have thus stopped running workshops and giving Textile talks. Both of these can disrupt my normal eating pattern and also mean I have several full days of activity together which can completely ‘wipe me out’. I have also spent time looking at every single thing I have been eating - I have virtually removed gluten from my diet and sulphites. You can’t believe how many things have sulphites slipped in, virtually all wine. I believe these three factors are helping me personally.
I don’t write this for sympathy, there are people with far bigger health burdens to carry than me. I am writing this to try and help get the message out for all those genuine migraine suffers, and there are lots of us. Migraine is one of those invisible but very debilitating conditions affecting not just the suffer but often the immediate family and friends. My advice, to sufferers, is be forensic in your approach to what is causing the migraine. Try and reduce your use of drugs as in time these can lead to even more migraine attacks. Particularly look carefully at your diet, read the small print on food labels. Is there a pattern developing? Learn to say ‘no’ when asked to do more than you know is sensible. You are likely to be very conscientious by nature and people will ‘expect’ things of you. I have been really surprised at some of the negative reactions I have received as I have reduced my commitments but I know myself I have done the right thing for my health.
Useful sources of information
The Migraine Trust, do try and attend a day seminar if you can. It was invaluable for me and gave me more leads and things to try to help improve my situation. www.migrainetrust.org
Dr T’s Migraine Miracle Group - on facebook - an American Doctor who is a migraine sufferer and who writes a lot about diet.
Do feel free to contact me personally if you want to know more about some aspects of this.