Earlier this year I decided enough was enough. So I made a referral to the National Migraine Centre in London (http://www.migraineclinic.org.uk), a charity that’s at the forefront of research and treatment and accepts patients from all over the UK. I was given an appointment just after the May bank holiday so Tim and I decided to make a weekend of it.
We had a great time exploring the capital and I was so glad to have my husband’s support for the appointment. I’d written out everything I was experiencing, the things I’d tried and the questions I had. But when it came to it, I could hardly speak. I was embarrassed that my file had my professional title ‘Dr’ (psychologist, not medical) as I launched into a haphazard jumble of half-questions and mumblings. We’d come all this way and waited so long, and I couldn’t get my words out in any coherent order. In the end I just handed him the pages I’d written out. The reality of it all was starting to sink in and it was all I could manage not to run out of the room. The consultant was kind, he answered every question and gave his diagnosis without hesitation.
After years of assessments and research and treatments for different things, every single symptom was explained as part of one disorder – chronic migraine. It was such a relief to know we only had one thing to deal with, not twenty. He also resolved all the conflicting advice I’d received from different people and for once it was straight forward. There was no point looking at triggers at this point. Essentially, my migraine switch had got stuck at the ‘on’ position and it needed some significant neurological intervention to reset it.
We agreed a treatment plan – we’d try nortriptyline first as it was less severe than some of the other preventative treatments. I’d tried amitriptyline previously but it had made me really drowsy; the nortriptyline was less likely to have this effect. I’d start at a low dose and slowly work up to an effective level. We’d review in 3-4 months time.
The following months weren’t much fun. In brief, I had a lot of gastro-intestinal side effects (it’s a good job we’ve got a nice bathroom because I spent A LOT of time in there!) and various other physical things that would settle down just as I was due to increase the dose again, at which point they would all start again. Some of the emotional effects weren’t so good either and I’m ever grateful to my friends and family for being there through it all.
The worst was when I developed suicidal thoughts – I’d been warned they could be a side effect but nothing prepared me for how suddenly and clearly they dropped in out of nowhere. Fortunately I was trained in suicide prevention so I made a map of my support network and emergency contacts and kept it on me at all times. I asked people to text, phone or call round at regular intervals. It gave me some security but it was unsettling to feel that I wasn’t fully in control of my own mind. I also asked a group of people to pray. It may be coincidence, it may be something more, but I had no more suicidal thoughts after they prayed and for that I was very grateful.
I continued to have the ever-present headaches and jumbled-up migraine symptoms (dizziness, nausea, brain fog, etc) which I could just about carry on with, though work was a real struggle. But then I started to develop stand-alone migraines on top of that. These totally wiped me out and I ended up missing a few days from work here and there. I hated phoning in sick and cancelling appointments and I only did it if I was absolutely comatose. One day I’d been awake in the night feeling terrible, then I’d got up in the morning, got ready to go to work, took some painkillers and set off even though there was a rave going on in my head. And then my arm started tingling and I couldn’t move it. Fortunately I wasn’t far from home and was able to just pull in on the kerb. I rang work to give my apologies, then I cried, then I sat back and just looked at myself thinking, this is so silly. I reclined the driver’s seat and slept most of the morning, right there in the car.
It took the six week summer holiday to give me enough perspective to see what was really going on. I was pushing myself ridiculously hard. The trouble was, it was accumulative, as in ‘Yes, I feel terrible today, but I felt just as terrible yesterday, and I managed to go to work then, so I should be able to go to work today’. Also, work was a distraction. The migraines were horrible, but they were no different if I was busy or doing nothing. So I might as well be out and about doing something useful and keeping my mind on other things rather than sitting on the sofa with nothing to do except focus on how awful I’m feeling.
But in reality, I was so focused on keeping going that I was taking risks. It was only a matter of time before I made a mistake – either in my work or on the motorway.
Some people have said I’ve been brave to keep going. I think a lot of the time I’ve been in denial. When something is constant, it warps your perceptions. The abnormal becomes your normal.
Over the six week break, I slowed down. I stopped. I slept. I went for walks, I watched DVDs, I saw friends. The migraines were no different but they were easier to manage. I started to realise how much pressure I’d put myself under, and how it had drained me and my relationships. Yes, I’d just about managed to keep going at work, but it came at the cost of everything else. Plus the ‘work’ that I was doing was a far cry from what I was able to do when I was well.
So I had six weeks off as part of my contract. And I thought that would be plenty.
It crossed my mind towards the end of August that perhaps I wasn’t as well as I had hoped I would be by September, but I honestly thought I would be fine. Nobody likes going back after a long holiday, it’s always a change in gear.
But on the first day of term, I knew I wasn’t safe to drive. I’d made myself a checklist that I had to pass and I couldn’t pass it that day. So I got the train. I was dosed up on every painkiller, anti-nausea and dizziness medication I could take and I wore my black-out eye mask (ever the trend-setter). I made it to the office and I managed a few catch-up conversations, but I couldn’t do the usual ‘yeah, I’m fine’ any more.
I set to going through emails, sorting my pigeon hole and writing a report. The room was spinning; I held my hands like blinkers and carried on. I felt sick; I ate a pack of cream crackers and carried on. My head was pounding; I ignored it and carried on. I asked for any calls for me to be taken as a message because it was taking every ounce of concentration to stick with what I was doing and I knew I couldn’t find the words to answer any spontaneous questions. I finished my report: I can’t remember what I wrote. Then I went to the loos. And cried. And called my husband to come and pick me up. I hadn’t even managed a day.
I knew then that something had changed. Each day in the summer term, I’d felt like a phone battery on low, about 1%, maybe 2% on a good day. When I got home from work I’d be at 0, I’d have tea, go to bed, plug myself in and be back at 1% in the morning, just enough to scrape through the next day. Over the summer I’d got myself up to around 10%. It had taken six weeks. I couldn’t go back to 0%.
So Tim came to pick me up and he took me straight to the doctors. I still wasn’t really thinking about being signed off, I just wanted some advice. The GP was great, one of the best I’ve seen. He suggested we start to increase the nortriptyline by higher increments so we see an effect sooner. He also signed me off work for two weeks to give me space to deal with the side effects of increasing the medication at a higher level. Being signed off was a massive blow, even though part of me suspected it was coming.
The two weeks went quickly and I booked my follow-up appointment with the GP. The outcome was that we would increase the dose again and I would be signed off for four more weeks. I’d had days off here and there but the most I’d ever had off previously was two weeks. A whole month felt totally unreal and it took a long time to sink in. It was a big shift to admitting just how bad things had got.
My colleagues were really supportive, even though I know this is a hard term with heavy work loads and the biggest legislative changes in SEN since the 80’s. I can’t let my brain wander there too much, otherwise I just feel overcome with guilt and sadness that I’m not taking my fair share of it. I should be in the thick of it, with my team, going through it together and coming out the other side. My only solace is knowing that I wouldn’t be much use if I was there. If fact, in my current state, I’d probably be a liability.
I’ve been surprised by how much I miss work. Having time off sounds great from afar, but it sucks in reality. I miss having a purpose, I miss contributing to something bigger than myself, I miss the challenge and the satisfaction of a job well done, a problem solved.
At the same time, though, I know I couldn’t do my job at present. I’m happier knowing that I have no responsibility, because even the simplest things flummox me. I’m finally living within my capabilities and I’m generally happy – not ecstatic, but happy. My biggest indicator is my boredom – when I get bored, I know I’m able to do more. The normal, non-migraine me likes to be busy and can’t sit still unless it’s to watch a high action film (I’ve been very disturbed to find the migraine-me can only cope with Disney and romantic comedies). On a bad day I can sit in a chair and listen to the same CD three times and still not feel bored. On good days though I’ve been able to go for walks or meet friends in coffee shops. I thought I was getting there, that it would all be ok once the nortriptyline kicked in, once we got it to the right dose. But sadly that wasn’t to be…
Next installment: Giving in, but not giving up
Missed part 1? Have you tried…?
Chronic migraine – what’s it all about? See first post: My Brain BSOD