I came off the pill to feel better – instead I was left with a horrendous side effect

I spent days with the curtains closed, a shell of my former self, constantly nauseous, dizzy, exhausted, and in pain (Picture: Justine Desmond/Sarah Holland)

Pain surges through my body, starting in my lower back, reaching up through my neck before crashing over my head. 

I can’t feel my legs and I’m shaking uncontrollably, clutching a bowl in case I’m sick. The whole room is spinning and I sob at how terrible I feel. 

Yet, this isn’t a stroke, or a medical emergency. Nor have I had one drink too many. Instead, I’m going through a particularly brutal vestibular migraine, or migraine with vertigo. 

It’s a condition that I started experiencing just before my 30th birthday, and that caused me to be signed off from work, remain in bed for weeks on end and has changed my life completely. 

It began when I’d read a book by a leading women’s health practitioner about the power of natural periods and menstrual cycles. I found it empowering, and it inspired me to come off birth control and start having mine again. 

The book mentioned menstrual migraines, but the information was limited. I had no idea that for some people, birth control is essential to regulate attacks. At that point, I had no idea I had migraine.

What I also didn’t know was that migraines are more common in women, because of hormonal influences. 

Within a few weeks of coming off my contraception, I began experiencing vertigo, nausea, dizziness and headaches. 

I’d go into the office, only to develop a pounding headache when looking at the screen and for the ground underneath me to feel unsteady, and I’d be sent home again.

I’d love to write a novel, or run another half marathon, but I have to take a slow and steady approach to these dreams (Picture: Sarah Holland)

This lasted for three weeks, and I had never experienced prolonged sickness like it. 

I had an idea that my hormones were to blame, but the book had reassured me it was possible to get on top of them, and I felt determined to ride it out.

But it only got worse. My attacks stopped becoming episodic, and became chronic, with no respite in between. 

I went to my GP, who diagnosed vestibular migraine, and gave me medication to stop attacks. However, the medication only did so much and the migraines kept returning. 

I struggled to get out of bed or do basic tasks. Even sitting up to eat lunch would exhaust me. 

Eventually I was signed off sick for three months, which turned into almost five.  

I spent days with the curtains closed, a shell of my former self, constantly nauseous, dizzy, exhausted, and in pain. I received a new diagnosis of chronic migraine, which is defined as having headache for at least 15 days per month, with eight of those having migraine symptoms, for at least three months.   

My brain was so sensitive that even audiobooks and gentle music were triggering. Reading became a challenge. Phone calls were draining and I couldn’t scroll on my phone, or watch TV. 

All I could do was lie there. It was incredibly isolating. Unable to talk to friends or exercise, my mental health began to suffer. Even basic yoga stretches would leave me reeling. 

Even sitting up to eat lunch would exhaust me (Picture: Sarah Holland)

The only thing that kept me going was body scan meditations; paying attention to different parts of my body, and keeping the panic at bay by focusing on my breath.

It was an extremely tough, challenging time.                                                         

I went back on birth control and tried multiple medications, but progress was slow. I couldn’t be exposed to sunlight, so when the rest of the world was venturing out as lockdown was eased, I was still stuck inside. 

By autumn 2020, I thought I had recovered enough to return to work, throw myself back into life. But it didn’t last. I fell ill once more and I had to learn the art of pacing the hard way.

I went down to part-time hours at work, and eventually changed to a new role, one that suited my health needs better.

I had strict screen allowances, made dietary changes, avoiding alcohol and limiting caffeine, and kept exercise to a minimum, as I had been warned by a migraine specialist that exercise can be a trigger.

It’s now been three and a half years since my first attack. Although I’ve improved a great deal, my condition hasn’t gone away completely and it still continues to affect every area of my life.

Working reduced hours and having time off on sick leave meant money was tight. Travel has become risky.

I’ve had to miss out on countless activities and it’s become the norm to make plans while not knowing if I could go through with them. Or knowing if I do go through with them, I may struggle through in silence until I need to leave early.

Most of my friends have been wonderfully supportive, and understanding about the fickle nature of my disease, but some friendships have faded away over time.  

Travel has become risky (Picture: Sarah Holland)

Migraine has challenged my identity. I’ve always been a driven and determined person, but I’ve had to change my mindset, and this has clashed with the person I used to be.

I’d love to write a novel, or run another half marathon, but I have to take a slow and steady approach to these dreams. 

Migraine is a lifelong, recurrent, neurological disease. For some people, like me, it’s not just a series of unrelated attacks, but a disability, a daily condition to manage.  

The World Health Organisation considers a day with severe migraine as disabling as quadriplegia, psychosis, or dementia.

Chronic illness is disconcerting because it doesn’t fit a satisfying linear narrative. There is no obvious cure, no date on the horizon when it’s guaranteed to be better. You just have to have faith that it’s ahead.  

The worst part for me hasn’t been the pain. It’s the frustration, the mental health challenges, the productivity guilt, and the enforced rest (which isn’t as good as it sounds).

But there’s so many positives, too. Recovery is not straightforward, yet it’s happening. 

I look to a future when my migraines will be an occasional nuisance, and I’m getting there. Change is happening every day. My attacks have more than halved, which is an amazing outcome.

I’ve only had a handful of attacks in the last few months. I’m proud of the progress I have made, the resilience I have shown, and I’m grateful for all I have and am able to do.

I’m slowly but surely getting my life back. I’ve even been studying on a creative writing course alongside my day job, which would have been unthinkable two years ago.

A day, week or month without an attack is a gift to me, and I thrive when they happen. I’m grateful for every coffee with a friend, every jog or exercise class, every train journey, every walk in the sun that doesn’t provoke an attack.

I will never take them for granted, and long may they continue.

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I was signed off sick for three months, which turned into almost five.