A Musician Managing Migraines
In this week's blog, I talk about my experience dealing with chronic migraines, where it all started, the treatments explored, how it has affected my daily life, and what that has meant for my career as a musician.
THE CLUMSY CHILD
As a young child, I would go from being so tired, sleeping through lessons, to literally jumping around and off things. Naturally, being in that latter, hyperactive, state would lead to accidents. Many of these would result in falling head-first onto hard things. Over the years I've hit my head on - a concrete barn floor, falling off a stack of hay bales, leaving me concussed; the corner of a brick wall, cracking my forehead open; the lawn, having been kicked off a trampoline; numerous ceilings and walls, jumping on beds and the like; and last but not least, having a rope swing snap mid-swing and falling from quite the height onto a fallen tree. I hit my head so hard that I lost my memory for almost a whole day and was concussed for several more.
It comes as no surprise then that at the age of 11, I started to complain of frequent headaches. We went to the opticians who said I had needed glasses from the age of two but that didn't cure the headaches. Every time we visited the GP, they would say I wasn't drinking enough, despite getting into the habit of carrying a bottle of water around with me all the time. A visit to the doctors during my GCSEs would result in a diagnosis of stress and tension headaches, which continued into my A-levels.
FINDING A CURE
It was only after turning 18 that the doctors began to take me seriously. I was diagnosed medicines like amitriptyline and propranolol. Not feeling any improvement using them, I was given an MRI scan which found swelling in the optic nerves. I was then offered a lumbar puncture, an injection into the spine to see the level of fluids that suspend your brain. If they're either too high or too low then you'll have either a high pressure or low pressure headache. A slightly higher reading than normal was found and so I was drained to a normal level, diagnosed as having Idiopathic Intracranial Hypertension and prescribed acetazolamide. I remember my eyes feeling so quick and responsive after that drain, it was a bizarre (but good) feeling.
A couple of years go by and I'm still noticing headaches. I'm given another lumbar puncture which finds a normal reading but I'm drained anyway. This then leads to a low pressure headache which causes me to collapse. After being taken to A & E, it is concluded that I do not have Idiopathic Intracranial Hypertension and am taken off the acetazolamide.
Since then, the consultant I've been seeing for over ten years has come to the conclusion that I have a 'chronic migraine'. I have been checked for sleep apnea, which I don't have, have undergone pain therapy (something I had developed on my own years before in order to cope with the pain), acupuncture, physiotherapy, and am now about to start taking topiramate. If that doesn't work, I'll be offered botox and if that doesn't work then we'll be back at square one.
DESCRIBING THE PAIN
Over the years, the pain has gradually got worse. It started as a headache that I would wake up with, which would subside after a couple of hours and then gradually build back up again towards the end of the day. As time went by, the pain became more intense and would take longer to subside. Now, even with the alleviation of pain in the morning, it can still be felt throughout the whole day, even before it gets worse again later on. This has lead to days where I struggle to get out of bed and have had to take naps in the afternoon to recover, despite that meaning pain again upon waking up.
Alongside this, other things that cause pain to the head now include strong smells, like the scent of flowers, and my new optician has finally come to the conclusion that I already knew for years; I'm photosensitive, with eyes that are slow at adjusting to bright light.
The main problem I've found, however, is that my head is most sensitive to increased stamina. As a child, I was able to run around like a crazy person but now even walking up a flight of stairs causes my head to pound in time with my heartbeat. The first time I noticed this was at the age of nineteen, going for a walk with my Dad and being unable to walk up the steep hill of a field, having to stop numerous times to allow the pounding to subside. It's ironic that something good for you like going for a walk can end up causing so much pain that I am reluctant to go out. Something I used to love doing.
On top of all that, two to three times a month the pain will become too much and I'll suffer such a strong migraine attack, accompanied by nausea and occasionally a dizzying aura, that lying down in the dark is the only thing that helps.
MIGRAINES AND MUSIC
With all these triggers, it's easy to come to the conclusion that playing an instrument will also cause the migraine to worsen. When you're playing a 10-page long piece of music with few places to rest, it starts to increase your heart rate. This in turn causes the pounding. When you're practicing the same piece for a recital 3 hours a day, the pain can be considerably difficult to manage. It got to a point where I had to limit my practice and request a midday time for recitals as I knew that would be when my head was at its calmest.
I went to university wanting to become a performer, perhaps a session musician. This would have required hours and hours of practice a day, however, for the rest of my career. Throughout my four years of undergraduate degree, with the amount of practising and performing I did, I discovered just how unrealistic this would be, due to the amount of damage it would cause to my health, both physical and mental.
It's not all doom and gloom though as it lead to my discovery of a love for composition and music theory. Teaching allows for a varied pace in playing instruments and working for myself means I'm able to give myself as many breaks as my head needs.
ALL IN YOUR HEAD After reading all this, some of you might be feeling sceptical of just how bad this is, thinking that it's all in my head and that's fine, I've doubted myself a number of times of the years and have had doctors question it when they've not been able to find an answer. I know it's real though because I've talked about it to so many people over the years.
I've met someone who has never had a headache before (I'm very jealous). It was strange having to describe a pain I'm so familiar with to them. I know people who can sit and play games all night and still feel fine going to work the next day with no sleep; that would be impossible for me. I have athletic friends who might feel a little pain after running a marathon but as long as they stay hydrated, their head is usually fine; that would never be the case for me, no matter how much water I drank.
Most importantly though, I've met other people with the same issue, even if theirs is slightly different. For them, caffeine can help a little and, for one person in particular, it was discovered that her migraines were caused by an abnormality in her stomach which was removed and successfully dealt with the pain. Headaches and migraines are the hardest things to diagnose and find cures for since, while physical pain, it's not a visible injury. The crazy thing is, there are over 150 types of headaches that can occur and there are still more to discover.
If you're a sufferer of headaches and/or migraines, you know the struggle. It can be hard to cope with when no cure has been found but don't give up. Get help, push those doctors and consultants to pursue every avenue, even the newer medicines and treatments. I've heard of a type of hearing aide that emits a high frequency that can dull certain nerves that cause headaches and migraines. There's even a certain ear piercing that can apparently help alleviate pressure points. Because it's still very much unknown territory, there is always new research being put into the mystery of headaches and migraines, so keep exploring and keep positive.
For those of you who don't suffer with headaches or migraines and have perhaps never had one, have a care for your friends, family, colleagues, employees, or anyone who suffers from them. Although you cannot see the pain, please take them seriously. Coming from someone who has had to leave jobs because of this chronic pain, your sense of care and understanding will help so much.
Thanks for reading!