I first started taking migraines in my early thirties. It was strange. At first I had no clue what was happening. I thought I had stared into a light a bit too long and the visual disturbance was just the ‘imprint’ of the element of the light. It continued to spread across one eye and, as it was a Sunday night and I was getting ready for work, I was seriously ready to phone my boss to tell her not to expect me in the next day because something had happened to my eyesight. I’m glad I never got to make that phone call because it stopped as soon as it started and that was that for a while. Thankfully there was no pain in the aftermath, just a strange visual show.
I had always been told migraines left you totally incapacitated, throwing up, unable to cope with life, bedridden in dark cold rooms for days on end, so when I got severe headaches but somehow carried on I dismissed them. It wasn’t until I was sent to a neurologist after my visual auras became much more frequent that I was diagnosed as having classic migraine with aura. I described how I had felt unwell all day, off my food, upset by smells but had persevered at work (because that’s just what I do!). I went home, sat on the settee, bent forward to pick something up off the floor and felt like something had exploded behind one of my eyes. ‘Yes, that’s a migraine.’ ‘Oh, OK then.’ We discussed possible triggers but could not find anything other than hormones. Just my age then. I was given Triptans to take if I got an aura and sent on my way. I couldn’t really say I was suffering when I saw how much some of my friends were completely floored by their migraines.
A couple of years ago then the migraine auras returned with vengeance. I wasn’t taking any medications to control my migraines but something had changed. I was really embarrassed because at one point I had not worked a full week in months. I was sent to see various doctors as I had had a whole plethora of blood tests done which revealed there was quite a lot going on beneath the surface. Too many platelets, raised tumour markers, positive ANA blood tests. It was quite scary, not to mention exhausting being sent around different departments.
I was sent back to neurology. Thankfully the neurologist didn’t suspect anything more sinister than migraines but he convinced me to try Topamax. I eventually gave it a go after reading the long list of side effects and trying to to weigh up the side effects with my migraines. I don’t want to scare anyone off trying it – some people use it and it works wonders for them – I lasted two days on it and took two days to recover. Not the drug for me so I left it feeling the migraines and auras were preferable to the side effects of this therapy. (Please, don’t let that out you off trying it, if you are recommended it. Everyone is different!)
During my various hospital rounds I was sent to haematology where I was diagnosed with Esential Thrombocythaemeia, a condition affecting the bone marrow which causes it to produce too may platelets which puts you at greater risk of stroke, thrombosis and so on. It can cause ocular migraines but in haematology the doctors still did not think this was the cause of my migraines. Instead they flagged up my other symptoms and my positive ANA and pushed for a referral to rheumatology.
Eventually I made it to rheumatology where I was diagnosed with a condition called Limited Scleroderma. I have a mild overlap with Lupus and inflammatory arthritis. Part of the treatment I was started on was to control my Raynaud’s. I have no idea how or why, but since I have started taking it, my aura have vanished. I get the very rare headache but this is nothing to the regular occurrences I was getting of the migraines beforehand. Recently I decided I would stop taking the tablets for my Raynaud’s because the weather was a little warmer. I had two migraines within three days. Lesson learnt.
I am aware that there are people who really have a rough time with their migraines but I seem to have found a way of controlling mine and I am grateful for that. Having this sort of a condition makes things really tricky – your social life, working life, relationships with friends and colleagues, your self esteem and self image all suffer. I was mortified – most people were very supportive and understanding whereas another acquaintance completely cut me to the bone with a throwaway comment about, ‘Oh yes, one of your ‘migraines’!’ Making arrangements was a bit of a challenge. The best I could do was say I really hoped I could be there but I did end up missing out on things and people I really enjoyed and liked being with. Thankfully my friends stuck by me. I know other people aren’t as fortunate.
While I would rather be disease free and in good health, I think my experiences have made me more aware of invisible illnesses and their impact on people’s lives. I am grateful that I am still in reasonable health. I obviously have a few health issues I need to monitor but I can mostly cope and try to keep myself active and challenged. If anything, I now realise how important it is to make of the good times and not to be defined by your illness – as much as that is possible. There are lots of therapies out there and I would encourage everyone to try and find the right treatment for you