Monday, 15 April 2013

My Everyday Life with Migraines

So, what a lot of people don't realise is how much of an impact migraines have on the life of a chronic migraine sufferer.  With migraines being episodic then you'd be forgiven for thinking that my life is only affected by them when I have an attack, which is very frequently, but it's so much more than that.

To explain, let me tell you about 'triggers' and 'thresholds'.  When most people think about what can cause a migraine attack, they think about 'triggers' like "my mum always gets a migraine whenever she has some cheese" (usually followed by something like "so you shouldn't eat cheese and you'll probably be ok then") which massively over simplifies the conditions it takes to cause a migraine (as well as the fact that it's different for every single sufferer).

As humans are complex beings, it's a lot more complex than that.  It's usually a combination of factors which leads to a migraine and that's where thresholds come in.  Infrequent sufferers have a high threshold which must be surpassed before they are hit by a migraine.  Chronic sufferers like myself have a much lower threshold to start with.  Then there are all the other factors which lower the threshold - those things that people think about as 'triggers', they're threshold lowerers, so a stressful day will lower the threshold, a late night will lower the threshold, in some people's cases certain foods will lower the threshold, for the majority of women the threshold is lowered hormonally twice a month at ovulation and menstruation, and many more reasons.

As a chronic migraine sufferer, my life revolves around trying to keep my threshold as high as possible.
  • As travelling is a huge threshold lowerer for me and most of my friends live elsewhere in the country, then I rarely get to see them anymore.  If I have plans for a weekend then I can't be doing anything the weekends either side of that and ideally I take time off work either side like I have done this weekend for a simple day trip to London on Saturday.
  • Specific food types don't have a big impact on my threshold (though I have the common offenders only in moderation) but my hydration level has a huge one, so every minute of every day I have to be thinking about my hydration level.  If I let it dip a bit then that lowers my threshold significantly.  This also means that it's only on very rare occasions that I can have an alcoholic drink, about 3 times a year I reckon and only ever one drink on those occasions, except on my wedding day when I had two over the course of the whole day.  I've discovered an alcohol-free version of a beer I really love which means I don't miss the taste as much but I drink those sparingly too as when I'd have 2-3 of them I've had a migraine so I think there may be something more to beer as well.
  • Physical exertion lowers my thresholds which I've found really hard to learn to manage.  At the time you feel fine, you want to run around and enjoy whatever it is you're doing and you feel great so why shouldn't you.  It's later on when the migraine hits though so anything physical I have to weigh up beforehand where I think my threshold is at the moment based on all the other factors, which is very difficult to judge sadly.  Physical exertion you might think of solely as running around or doing something strenuous but it also includes the simple act of getting up and going to work, this simple act significantly lowers my threshold and there's very little I can do about that one.
  • Although I don't have much of a problem with specific foodstuffs, blood sugar level in general is something I have to be constantly aware of.  The advice I've had from my specialist is to eat little and often but that's something which is very difficult for me to achieve for a couple of reasons, one being that I'm half of a pair, we have our meals together when we're not at work so if I'm cooking meals for the two of us, little and often is very difficult to achieve then.  The second one is that I have only a small appetite which means if I have something small and snack-like (like a graze box for example, or a biscuit) then I literally can't eat anything for about 6-8 hours.  I never used to eat breakfast which contributed to my migraines so making sure I always eat breakfast now is important, a missed meal is a disaster and I have to be conscious to not let myself feel hungry, if I feel hungry then my blood sugar has already dropped.  This, together with the hydration, meals I am having to think about what I'm eating and drinking all day, every day, which can be exhausting in itself.
  • Regular commitments are a real struggle for me.  I've been in choirs all my life and it's a part of who I am and something which is really important to me.  I was in a great choir here in York called Soon Amore but I had to leave the choir a couple of months ago and I won't be able to re-join unless my migraines significally improve as I was missing too many rehearsals (I was making it to about one in four of them).  Anything which relies on me regularly being somewhere or doing something is extremely difficult as I have to cancel so many times.  The act of having a regular commitment in itself is stressful though, see the last point on the list.
  • When people are happy because it's a 'lovely day' outside, I sigh with sadness as that means a day of hiding indoors away from the sunshine.  Bright sunlight and especially sunshine when you're on the move and it catches between trees so it flashes over and over again lowers my thresholds so I have to be careful to have my prescription sunglasses with me all the time but that isn't always enough to help.
  • My vision is general is a problem.  I've had an ongoing eye condition for almost 2 years which causes spots in the vision of my right eye and intermittent flashing as well.  This means my left eye is having to work extra hard and my brain has to keep working out that the spots aren't meant to be there and keeps on filling in the gaps (based on what the left eye sees), so the worse my vision gets the more of a strain it is and the more migraines I get.  I'm considering trying an eyepatch to try and mitigate this as a factor but it seems a little extreme and would give me problems with depth perception when I'm driving.
  • Hormones are a problem for every woman as our thresholds are lowered at times of ovulation and menstruation  i.e. every two weeks.  I was getting migraines every two weeks like clockwork but I'm now tricycling the combined pill to keep my hormones level to mitigate these but being on the pill for a long time carries its own problems and risks, including causing migraines.
  • A regular sleep pattern is very important to maintain for migraine sufferers - going to bed at the same time each night and getting up at the same time each morning is very important.  A lie in at the weekend of just half an hour can be enough to cause a migraine.  This is why my alarm goes off at the same time, 7 days a week.  The problem I have is that I suffer with insomnia, which is even worse when I have a headache or a migraine, so for me insomnia is a cause of my migraines.  Incidentally, I believe it was this area which was a major factor in causing my migraines to start (see my post on My Migraine History)
  • The last threshold I have to constantly manage and be mindful of, and the one which has the single biggest impact for me, is stress.  It's difficult to explain this one; when people think of stress they think of a really stressful day at work, or maybe exams when they were at school, perhaps they think of trying to move house, starting a new job or taking their driving test.  Those things are stressful but they tend to be occasional stresses, those things would without question cause a migraine for me.  There are much lesser stresses though, the every day ones, the utterly unavoidable ones.  Just being in a work environment is a stress, just seeing people, any people for anything, is a stress.  Going to the supermarket is a big stress.  All of these things lower my threshold every single day.  Let me say that again as I don't think it's easy to comprehend how much of an impact that is on my life, the mere act of making food, of shopping, of going somewhere else, of even seeing a single person, lowers my threshold.  This means that I have to spend a lot of my time at home just resting, not even seeing my husband, I can only see friends on one evening a week and that's a strain.  I have to constantly try and monitor what my stress level is currently at, even the most minute of levels, and do all I can to mitigate that becoming a migraine. This alone takes over my life and stops my husband from being able to enjoy life as he would like to with me.
On top of these things dictating how I can live my life, or rather how little I can live my life, there are the migraines themselves.  When they happen, if I'm lucky then I catch it early on, I take my attack meds, sleep, rest and it aborts the migraine.  If I'm not lucky then either it doesn't abort the migraine or it re-triggers.  My migraines usually last for 3 days and when I am lucky enough to manage to abort a migraine, my brain seems to know it's still meant to be experiencing the migraine and I'm very fragile for the 3 days I would have had the migraine for, with the smallest of things being all it takes to re-trigger that migraine and when that does happen it starts from the beginning of the 3 days and it's impossible to abort it.  During these times I manage to go to work though I speak and move as little as possible whilst I'm there and I have to effectively hibernate whilst I'm at home, unable to cook etc.  When my migraines occur currently on average about once a week, this is a large proportion of my time.

So there you have it, that's how I live my life as a chronic migraine sufferer and what a huge impact they have on my life even when I don't have a migraine at that moment.  This is one of the biggest things which people don't understand about chronic migraine sufferers or any similar episodic illness, that your life is drastically changed and impacted all the time you're not having an attack as well. And if any of that made you want to cry, spare a thought for the fact that crying is a threshold lowerer for me but sometimes I just have to.

I'd be interested in people leaving comments please, either to tell me if this is in line with what they were expecting my life to be like now or as a sufferer themselves if they have found their lives so impacted or even more?

1 comment:

  1. Hi Daisy,

    I'm not sure if you know or not, but I'm also a migraine sufferer. I don't seem to have it as bad as you, mine usually knock me out for a day and linger in the background for another day, but if I catch them quick enough I can usually stop it altogether.

    I have been dealing with another issue for the past few years. If I touch anywhere from my nose upward to my hairline, I get a shooting pain in my head behind my eyes. It doesn't have to be a lot of pressure, brushing the tiny hairs on my face causes it, my hair touching my face causes it, touching my glasses causes it, a breeze causes it. Repeated touching of my face causes a migraine the following day without fail.

    I've been seeing the 'best migraine doctor in the country'for this, and the numerous medications he's trialled and tests he's made me have haven't helped. In fact, the side effects from the medication (sickness, mood swings, exhaustion) made it unbearable for me to keep trying to find out what it is. So now I deal with it.

    I know that if I swap my glasses for sunglasses, then swap back to normal ones a couple of times, I'll end up in bed the next day. I know that if I wear my hair down and it doesn't stay behind my ears the entire time (not possible) I'll have a migraine the following day. But at least I'm dealing with it without the other stuff on top of it.

    For me, the hardest thing about being a migraine sufferer, is other people's lack of understanding of them. I know from experience that a lot of people think of a migraine as a 'bad headache'. It's so much more than that. When I have to take time off work, or miss out on a social event with a migraine I wish people could understand what that means to me. I'm usually in bed, unable to open my eyes, unable to put up with any noise at all, feeling sick and just begging for the pain to stop. I hope someday it does. And yours too.

    Lisa x