My Migraine History

As I sit up late at night, much later than I should be be, but unable to sleep because of the headache I have at the moment (migraine hangover), I thought I'd post a little on the history of my migraines.

They started about three and a half years ago now, shortly after I moved to Norwich. The first one was terrifying, I thought maybe I had a brain tumour or something.  I was at work in Norwich, staying later than usual because I was performing an update to the system which had to be done at that time as it had been pre-arranged.  I'd had a headache building through the afternoon but I had no idea what it was building up to.  By the time I begged my (then) boyfriend (now husband) to come and pick me up from the office I was in blinding agony. It felt like my head was splitting in two and I wanted to gouge out my eye as that's what it felt it would take to relieve the pain (it wouldn't have of course, which is why I didn't!). I think he realised how bad it was when the tea he had brought me in my travel mug to make me feel better just made me want to hurl and I tipped it away. That first migraine lasted for the rest of that day but was thankfully gone by the next day.

I had no idea what had caused such a horrific and incredibly scary headache but as it had gone away, I moved on.
About a month later it happened again, no nausea this time which is what made me assume it wasn't a migraine as I thought all migraines had nausea.
About a month later it happened again, and it was obvious then that it was becoming a trend.  They were usually happening immediately after something big & stressful, like the Saturday night implementation of a project I'd been working on for months.

I believe that a collection of factors triggered this condition in me. A few months earlier I had gone through an extremely stressful breakup, I then moved to Norwich into a house far too small for both mine and my husband's things and it was a place I was never happy to be in. The most important factor though I believe, was that when I moved I kept the same job to work from the Norwich office instead of the London one but on the proviso that two days a week I work from London, to be in my desk at the same times I would be normally in Norwich. This was meant to be the same two days each week but it rarely was, changing frequently and unpredictably. It meant that I was getting up about 3 hours earlier two days a week and travelling a two hour train journey there and a two hour train journey back. I believe this was the thing which was the final straw for me and triggered my migraines. Travelling has consistently been a major trigger for me.

I've always hated going to the doctors so my husband had to practically drag me there.  The first doctor I saw suspected migraines and gave me Migraleve, he gave me the type with anti-nausea stuff in it, despite the fact I'd only had the nausea once, and because it contained that I could take it so infrequently that it was useless and barely touched it anyway, so I started self-medicating with paracetamol & codeine - that didn't stop the pain but it did lessen it a bit.

As time progressed, so did the durations of my migraines. They eventually settled on being almost always 3 days long and I had to start missing work with them.

Almost a year after my first migraine and about 6 months of keeping on visiting my doctor's surgery, I was finally prescribed a triptan and something to take every day to try to prevent the attacks from happening.  This was propranalol, a beta blocker used for heart attack patients and also commonly for people who need to calm their nerves like stage performers and snipers!  I later learnt that other than triptans pretty much all the treatments and prevents for migraines have been developed for other things and it's a happy coincidence that they help with migraines which makes me wonder how many things could help if investment was put in, but that's for another post.

Anyway, my doctor who prescribed the triptan to me (sumatriptan), triptans being a specialised type of medication to treat a migraine attack, told me that the medication was extremely expensive so he would prescribe me only 6. He never explicitly said "so only take them if you really really have to" but that's the impression I got and I felt like I was wasting NHS money every time I took one for it to only help a bit. They're actually not that expensive and I certainly shouldn't have felt bad about it.

A year into my migraines and I was trying everything anyone suggested to try and stop them. I was having to take more and more time out of work and they were sending me to Occupational Health which scared me and made me more stressed. Whenever I returned to work, always with the dreaded migraine hangover (imagine a really horrible hangover and how bad that feels, with the pounding head, the unquenchable thirst and sometimes nausea, that's the day after a migraine has finished for me and so many other sufferers), I was expected to pick up from where things were immediately and be totally on the ball and working triply hard to make up for the time I had been off. That was impossible of course, and furthered my stress.

Occupational Health recommended a trial of reducing my travel to London to two days a month instead of two days a week and my migraines decreased in frequency dramatically. When the three month trial was up, now 18 months since my migraines first started, they reverted me back to the previous two days a week.

It was shortly after that me and my husband announced that we were expediting our plans to move to York in an attempt to help me find the peace I was needing to help me. I started a new role as a Project Manager on a 1 year FTC when I moved, but working for the same people in London though thankfully then without the travel to London. The GP I registered with was so much more helpful than any of the ones I saw at the surgery in Norwich and I was thrilled.  We had even found a house to buy almost immediately!

Things were just starting to look better when spots stated appearing in my vision in my right eye. I was referred to the hospital and told I had something called PIC.  I had lesions on the back of my eye corresponding to the spots in my vision. They told me they could leave me untreated and it would fix itself but one of them was too close to the centre of my vision and I had to be treated. I won't say what happened but I consider it to be a trauma on my eye and it was horrific to go through. The degraded vision, the trauma and the stress all went to increase my migraine frequency and I found myself in a near endless cycle of migraines back-to-back, wiping out most of my August and September of that year, now two years since my condition started.

My GP had already referred me to the York Hospital Headache Clinic by this time and by the end of September he signed me off work for 3 weeks until my appointment there. In those three weeks I then had only one migraine, the stress of not trying to work through the lesser headaches between the worse ones finally being lifted.

I learnt at the Headache Clinic that I had fallen foul of Medication Overuse Headache, essentially the drugs I was using to treat my migraines was causing more migraines. Since that visit I have been strictly limited to only 6 treatment days a month which has meant some very painful completely untreated migraines. I started a plan with them to try out various different triptans, a new medication plan of attack when a migraine occurred, and understanding of triggers and thresholds. I learnt a lot and I continued to do so with each subsequent appointment too.
I was doing better for a few months after my trip to the Headache Clinic but in the January. Spots appeared in my vision again. This exacerbated the migraines again and this time it wasn't PIC as there were no lesions. 15 months later as I write this they still don't know what it is and I still have the spots, currently in a blanket of small spots across my right eye vision with a large section wiping out almost all my vision to the right of centre.

I was experimented on, I was put on steroids, all in the run up to my wedding in the June.  Worse than all this though, was that my work started putting me through disciplinary procedures. The outcome of each meeting was that I was already doing all I could and I should keep doing all that and here's a formal warning. My migraines, of course, became terrible again.

I was seeing a clinical psychologist and an acupuncturist both of which I was referred to by the Headache clinic during this time. Neither of them particularly helped, the psychologist said I needed to leave my job (which I knew already) and acupuncture sadly didn't help me at all.

By May I was signed off work for 3 weeks again as I had barely seen a day of April (with only 6 treatment days allowed in a month!) returning to work just before my wedding. It was at that time I started on Naratriptan, the right triptan for me! Finally one that did what it was meant to and aborted the migraine if I caught it early enough. The downside being that I'm left a bit spacey and prone to sudden tiredness but that's incredible compared to a three day migraine!!
By the time I returned from honeymoon I was told I didn't need to work the last 2 weeks of my contract and was given garden leave until the end of June.

Once I wasn't working, although job hunting and being unemployed was stressful, it was such a massive weight off my shoulders to no longer be working where I had been and for who I had been that my migraine frequency improved to only one migraine every two weeks. This was life-changingly better, especially with a treatment which would abort the migraine most times.

I was discharged from the Headache Clinic at my following visit in the October which at the time made me felt like I was almost a normal person again but in hindsight I shouldn't have let them do.

I started my new job at the beginning of January. The most stressful day in my new job is less stressful than a normal day in my old job, and the commute is a nice drive in York during which I listen to an audiobook making my commute something to look forward to and enjoy. Despite this, my migraines have increased in frequency and I've had to miss a few days of work when the migraine either hasn't been aborted or has been re-triggered.  My GP has re-referred me to the Headache Clinic and I'm hoping they'll have more ideas for me to try and maybe the future will look brighter.

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?