Monday, 15 April 2013

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.

1 comment:

  1. Morning Daisy, found your blog via Twitter and Clairebellemakes. Just wanted to say what a fantastic idea this is - I've suffered since the age of 8 and go through good + bad patches. Tried acupuncture many years ago which really did help (note to self to investigate that one again!). I think mine is stress related - although there are certain foods I cannot eat. Your blog is very interesting and I've passed it onto another friend who suffers. I do get cross when people say to me 'it's only a headache'.... I wish! Perhaps they should try the awful pain and the dreadful sickness (not to put too fine a point on it, once I start being sick I can't seem to stop) GP is not particularly helpful either - might try the vet next.....!
    Have a good day and thank you for your blog,
    love Ellen x