Debilitating, daily migraines overtook writer Tonilyn Hornung’s life and marriage for years.
In a heart-wrenching essay for the Huffington Post, she laid bare the distance that her pain drove between her and her husband as she struggled just to leave her darkened bedroom in Louisville, Kentucky.
‘A migraine is no mere headache, and my migraines keep me disengaged from myself and from my husband,’ author and mother-of-one, Tonilyn, writes.
After missing concerts, vacations, and precious mundane moments with her husband, Tonilyn tried medication after medication – and they continued to fail her.
‘”When we get these things fixed, everything will be fine…” my husband did his best to assure,’ she writes.
‘It seemed my love’s focus on the future kept him resentful of my head in the present. Who could blame him?’
At last, she’s found some relief – as much through making migraines a part of the life she shares with her husband of 15 years as through medical treatment.
If you want to know what a day in Tonilyn’s head feels like, ‘go sit in a roasting sauna and hot iron his brain while eating raw fish from 2007.’
That’s what she told her husband one day at the depths of her despair.
It hadn’t always been that way for Tonilyn, who had loved long walks, travel, staying up late and laughing.
By the time she and her husband had been married a few years, a chuckle, or even a giggle, felt like dangerous territory that might trigger a crippling migraine.
Tonilyn’s neurological disorder set in suddenly three years and she and her husband got married.
It came out of nowhere, and laid her flat for a day, about 12 years ago.
‘If I’d removed my eyeballs, maybe the grilling in my head would’ve stopped,’ she recalls thinking about the pain.
‘Meanwhile, the tiniest of movements increased my nausea like I was riding a Ferris Wheel upside down and backward.’
But she was sure it was a fluke.
Tonilyn had never had a migraine before, and her husband assured her that everyone gets at least one in their life.
That isn’t quite true.
In fact, only about 12 percent of Americans get migraines, and the rate is higher among women, 18 percent of whom suffer the horrific head pain.
And we don’t know what causes the debilitating headaches, nausea and light sensitivity.
Their pathology is mostly chocked up to ‘brain changes,’ likely involving the brainstem, a nerve responsible for facial motor function and sensation and the neurotransmitter serotonin.
For women, who are more prone to migraines, hormone fluctuations like rushes and ebbs of estrogen may also trigger migraines.
Other things – like stress, smells, wine, certain foods, even the weather – can act as triggers, too.
For Tonilyn, that list got longer and longer.
The ‘fluke’ migraine became a monthly event, then started happening weekly.
Soon, one migraine blurred into the next, and the searing pain became part of every day life.
‘I spend my waking hours in a fearful haze, worried that blinking my eyes will trigger an agony that’s akin to barbecuing my brain,’ Tonilyn writes.
She started missing date nights, cancelling plans, spending the bulk of vacations in hotel rooms.
An attempt to venture out to a concert with her husband while on the cusp of a migraine ended in vomit on Tonilyn’s shoes.
Her husband would joke, ‘should I find a backup date?’
Tonilyn’s bed became her refuge, and her husband her loyal attendant – at first.
‘My love was there holding my hand in the dark of our bedroom until each migraine started lasting a full 28 hours,’ she writes.
‘The tenderness he’d shown lost its foothold as my condition became ordinary.
‘I heard a new distance in my husband’s voice. He simply couldn’t keep up with all the disappointments I was serving him, just like I couldn’t keep up with my migraines.’
Things went on this way for years. Tonilyn’s life and husband seemed to go on without her and she withdrew, becoming ashamed of her ‘broken’ brain.
Desperate to pry herself from her migraine swamp – and to repair her marriage – Tonilyn finally went to see a neurologist.
He was straightforward with her. There might not be a fix for Tonilyn. She could accept that, but that first appointment lifted a burden from her shoulders and her pain-plagued mind.
‘Meeting with the doctor gave me a new kind of relief. It was a freeing calm knowing that even though my migraines were mine, they weren’t my fault.’
Her husband felt hopeful, too – maybe too hopeful.
Different medications and treatment protocols became like a revolving door for Tonilyn. She had thought she’d been prepared to try, fail and try again, but still it took its toll on both she and her husband.
‘He began to look at me like I was broken, and I saw myself that way, too,’ she writes.
‘With no magic pill in sight, I wondered if it was enough to disconnect us from us.
‘And now, I see how it couldn’t.’
Instead of letting Tonilyn’s illness come between them, the couple ‘decided to make my migraines a part of our relationship because they are a part of me,’ she says.
‘When they’re ignored, our emotional baggage piles up like unintended laundry.’
The pair stopped making their plans far in advance, compromising instead on (pricier) same-day concert tickets.
Now, Tonilyn has found an injectable drug that’s given her back some painless days.
And she and her husband – who now also have a young son, two border collies and a cat – have found a release valve for the pressure migraines put not only on Tonilyn’s head but their otherwise loving marriage.
‘I understand now what motivates our relationship at the deepest level,’ she says.
‘It’s not our commitment or our love that keeps us together – even though we do feel both of those sentiments.
‘It’s our trust that we can make it through that bonds us. Our aim has always been to build a trust that will hold us up – especially when one of us needs to be carried.’