In 2019 I was diagnosed with cancer and advised to have part of my kidney removed. This was very frightening but I also felt lucky in that I had been diagnosed early and had my surgery very promptly with a fantastic surgeon.
Little was I to know, that the pain I experienced after my surgery from constant migraine was going to be my biggest challenge. We are always told that migraine (unlike cancer) can’t kill us but it can certainly make it very hard to tolerate life. Mine started about a day after surgery and I’m still not clear what may have caused it but there are multiple possibilities. The pre-surgery fasting and trauma of major surgery or the morphine. The hospital environment with constant noise, no fresh air and bright lights also does not help. I always remember one wonderful nurse who went around turning off the overhead lights in the daytime which just made everything a bit less painful.
Sadly, not all health professionals have such an awareness of migraine. My pain was made worse by delays in receiving pain medication, a few minutes can make a massive difference in either nipping a migraine in the bud or days of pain. The erratic timing of hospital meals and the terrible coffee also did not help. Breakfast arrived in a 2-hour window so I could be very hungry by the time it arrived which just escalated the pain.
What I wished I had known which may help other people
If you have surgery lined up visit your doctor first to develop a migraine plan and make sure you have enough medication. I had somehow hoped it would be ‘ok’ but, in reality, it probably won’t be. Plan for the worst. Make sure you have enough snacks in your bag. If you are a coffee drinker, think of some way to get caffeine possibly by taking some good, dried coffee or a canned drink. Take a good quality eye mask and headphones to block out noise. I saw my migraine specialist after my experience and he recommended that if I have to have surgery again I should take a preventative medicine for the days I am in hospital.
What I wished that the hospital knew
Many things that would really help in hospital to make it easier for people with migraines are of zero cost and even save money. Less use of bright lights, regular mealtimes and prompt pain relief would really help. It could also be a question discussed in the pre op assessment. Finally, advise all those working in health care not to say to say patients who are suffering from a migraine ”I hear you have a bit of a headache”!
As a happy ending a year after my surgery I fulfilled my dream of visiting the Australian desert. Despite the sun and heat I managed the whole trip migraine free.
Clare Thornley – Patient Story
*Please note, this story is for educational purposes only. It cannot be reused without permissions from The Migraine Association of Ireland to protect each patient’s GDPR rights. If you would like to use this story, please contact us first to request permission. Thank you.*