It is serious, it is disabling
The longest relationship of my life has been with migraine.
With the benefit of hindsight, I had my first at around thirteen, but they didn’t become a debilitating problem until my late thirties. By the time I was into my forties they were blighting every aspect of my life. Now into my sixties I still have them, but they are just part of my life again now and not my whole life.
My migraine would occur when I relaxed, so weekends and holidays were never guaranteed. I feel I missed out on so much fun with my boys while they were growing up. Even when I didn’t have an occurrence I would be worrying about getting one. Migraine was never off my mind.
My migraine followed the same pattern in those days (the nature of my migraine have changed several times over the years). They would come on suddenly and within minutes I would have a severe headache with vomiting and aversion to light. This would last three days and disappear as suddenly as it came. But for all three days I would lie in a dark room, throwing up every ten minutes into a bucket by the bed, as I was too weak and overwhelmed by pain and nausea to get up.
Although I tried to live a ‘normal’ life it was embarrassing to go stay with friends for the weekend if I ended up in this state. All I can say is – I have some very understanding friends!
How I lived with migraine
During lockdown I have had the chance to look back on how I ‘managed’ my migraine, and I think for many years I downplayed their seriousness, the extent to which they disabled me, and how they diminished the quality of my life. I actually lived in denial that migraine was impacting my life at all.
This seems amazing to me now but I did not have the same access to information pre-internet and visits to the doctor produced nothing more than the feeling that this was just something I had to put up with. So I did.
This was just the life I had and I am proud of myself for what I have achieved despite migraine. I actually got a PhD in 2011 at the age of 52 and worked as an academic researcher. I’m now retired from academia but I do educational support work which I enjoy hugely. I even had my own business for a while.
Affect on life
I was lucky in the sense that stress itself did not seem to trigger my migraines so it did not have too much of a direct impact on my working life, although it did affect it indirectly.
Missing out on social events, and the chance to have fun and relax at the end of the working week made me disinclined to take on additional responsibilities at work. If so much of my down time was going to be spent with only migraine for company I needed more time at the end of that for nice things.
Migraine was not the reason my second marriage failed but it was a factor. Shortly before he left, my ex-husband told me it was hard to be with someone who was ill all the time. Out of context this may sound brutal, but he had for years been stepping up to look after the kids when I couldn’t. It can’t have been easy for him being a single parent on these occasions, but I know he did a sterling job and my younger son said recently how much fun they had had growing up with him.
Impact on mental health
I also know that over the years migraine, and worrying about migraine, had made me depressed and anxious but again, I would not admit this to myself. By the time the kids had flown the nest I no longer knew how to enjoy myself or be light hearted.
As anticipation could also act as a trigger, I had to cultivate a neutral stance on everything. By the end I literally could not allow myself to look forward to anything. It wasn’t just migraine that brought me to this. Other life events also played their part, but depression, anxiety and migraine can go hand in hand I now know.
A GP that understood
Once I started to reject the idea that I should simply accept my lot I tried many things – reiki, acupuncture, homeopathy, aromatherapy, diet, you name it. I was even put on beta blockers at one point but I stopped taking them because I felt so tired when I took them.
I then had the most enormous stroke of luck. I went to see a GP who was a migraine sufferer! For the first time in my life I felt understood. Over the years as my migraine changed, so too did his approach. Thanks to sumatriptan I had started to live a more normal life but then I began getting migraine every couple of days and I finally agreed to take propranolol.
For the first few weeks I felt so lethargic I could have slept on the floor at work. I would have given up again, but the difference was I had weekly appointments with my GP this time and we gradually found a regime that worked for me.
Recently I have weaned myself away from propranolol and it seems OK. I still get migraine but it has been years since the days of the darkened room. But I have had to learn again that getting excited about the future won’t result in a lost weekend. I have a grandchild in Denmark now and my younger son lives in Hong Kong and I am very excited about seeing everyone just as soon as we can.
What I would say to anyone who feels their migraine isn’t being taken seriously enough? Be persistent and find someone to help you. It is serious. It is disabling. And it does have long term consequences besides unpleasant symptoms. No one should have to accept that’s just the way it is.
The views and opinions expressed in this ‘Migraine story’ are those of the author and do not necessarily reflect the official policy or position of The Migraine Trust.