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What It Feels Like To Have An “Invisible Illness” Put Your Life On Hold

And how you fight back.

Most people who know me would probably say as far as momentum goes I have one speed: fast. My best friend once told me I was “the Hermione Granger of handling shit”. Which, as someone who’s been waiting for her Hogwarts letter since she was 8, is a pretty huge compliment.

But there are times when my world comes to a screeching halt and I’m in a ball of darkness locked in my room for anywhere from one to several days. My entire life comes to a standstill – text messages go unanswered, I don’t show up to work, the bills don’t get paid. It’s all “on hold.”

All the other days? I just grin and bear it and let my inner Hermione Granger take the wheel.

An invisible illness that impacts one in four women, I am a “migraineur”. Which is just the moniker doctors give you when they really want to tell you they have no idea how to cure your temporary blindness, light sensitivity, aura, and the feeling as if someone put a metal bar through your skull.

I was in middle school the first time I experienced the pain. We were road tripping for a family vacation. I used to ride all the way in the third row like a queen. “Mom we have to stop. I’m going to throw up my head it hurts so bad. And why is the music SO loud?!”

My mom, also a migraine sufferer, told my dad to pull into the next rest stop. I took ibuprofen and drank some Gatorade and eventually drifted to sleep in the car.

When we returned home, my journey would begin. “We could try Imitrex,” I remember my pediatrician recommending to my mom. I was 11 years-old, on a medication intended to treat cluster migraines, that at the time was only on the market for less than 10 years, nearly the length of time I’d been alive.

It didn’t work.

That was the theme. And it’s the common theme many migraine sufferers face. The American Migraine Foundation has a nice little chart on its website that breaks down the differences between acute migraine treatment – the kind you get when you experience no more than 9 migraine days per month – versus migraine prevention therapy.

It makes you think it’s all too easy to figure out how to find a medication regimen that works for you. But oh if it were only that easy. What really happens is that it becomes a game: what combination of medications will work? Because there really is not a medication out there designed to specifically treat migraines.

Will it be the antidepressant that will probably make you depressed? Tried it. Went back to my doctor in hysterics in my early 20s. Will it be a combination of injections? Tried those. I lost so much weight that when I went home for the holidays my family almost made me quit my job and move home. In fact, they were working, but I had to stop them, too. Will it be an anti-seizure medication that acts as a preventative? I’m currently on those.

A study from 2009, that looked at the cost of funding research on headache disorders compared to other diseases, pointed out that medical schools spend only 3-hours on migraine treatment in 4-years of schooling. Scarier than that? Medical funding is averaged at just 50-cents per patient, despite it being the third highest debilitating disease in women

What does all of that mean? There is currently not a single drug on the market that was created to treat migraines specifically. They all are drugs that treat other things that doctors happened upon as treatment for migraines in combination with other illness (depression, seizures, etc.). And for the most part, doctors are just stumbling on treatments… guessing.

My decision to move towards a preventative route came when I was in the middle of a time-period where I was experiencing near-daily migraines. I tracked them at 27 out of 30 days when I told my neurologist I was ready to make the switch to medications that would have a wide-range of side-effects, but would hopefully end the daily misery of migraines.

The throbbing pain in my head, dizziness, sensitivity to light and sound, coupled with the tingling and numbness and occasionally even temporary blindness, was enough to send me begging for anything, just anything, to make them stop.

But here’s the fun part about preventatives, which he warned me about: “…you can still get breakthrough migraines even if this works.”

If they worked, what the hell did I care if I got a breakthrough migraine? And they worked! My daily migraines were down to maybe 3-5 a month. And those 3-5 were easily eradicated with triptans and ice.

Then, I got my first true breakthrough migraine… one that really was in it for the long-haul.

Here’s what that sounds like: “Your head hurts again?” “Maybe you should drink more water?” “Did you eat today?” “My sister’s friend gets migraines, she said…”

Here’s what that feels like: I’ll do anything to make this go away. Am I dying? Is the only relief an explosion in my brain?

So I got in bed with my migraine ice hat around my head, did an injection of my sumatriptan, rubbed essential oils on my temples… you know the normal migraine satanic rituals… and waited.

That one lasted 2 days.

I lost an entire weekend of my life. I remember being grateful (!) that it was a weekend. I didn’t have to miss work or face the embarrassment of telling anyone besides my boyfriend I was missing life due to something like a migraine.

“Do you think it’s triggered by hormones?” My neurologist asked me when I was in to see him after the episode.

Probably. I’d stopped my migraine diary once the daily migraines stopped because the patterns weren’t identifiable… since “every day” wasn’t exactly a pattern. I’d started wearing blue light blocking glasses at work, cut things out of my diet, changed my workouts to the morning, started going to bed earlier, started taking magnesium, began preventatives, now its hormones!?

“I can’t make those go away, you know,” I awkwardly laughed.

“Next time you can’t get it to go away after 24 hours, please call me. Don’t suffer.”

Famous last words.

There’s no question that there is a connection between estrogen levels in women and migraine attacks

If you are a woman who experiences “pure menstrual migraines,” you will only experience them during your five-day cycle – not during any other time in the month. Women who get menstrual and non-menstrual migraine attacks – women like lucky me, typically have more severe, longer lasting attacks during menstruation.

You know, the ones that last days, that no form of medication can get rid of.

A month after that 2-day migraine hit, life was relatively back to normal. A mild migraine once or twice, easily zapped away with the right dosage of medication. Never wanting to “waste a shot,” I’d always start with pills and decide within the first hour what my next move would be.

As the end of January began to roll around, and so did the end of my cycle, I began to panic. Where was my headache? Why was I feeling OK? Had I finally figured out the right diet and sleep patterns?

And then Sunday night it happened. It started slow like a train rolling into the station, and I honestly thought I had it under control. Just slight visual disturbances and light sensitivity – I’ll just take some naproxen and go to bed early. Monday’s are a big meeting day for me. I can’t miss work.

Monday. Everyone is just yelling, aren’t they? Everything is muffled. I leave work early and climb into bed with my migraine hat, and I take some more naproxen. Surely I will wake up and feel fine. By 11 PM I wake up and it’s here. A full blown, can’t see straight, there is most definitely a metal bar in between my skull, migraine. I stumble to the bathroom and I do an injection of my sumatriptan. I climb back into bed with more ice around my head and hope that in the morning I will wake up with relief.

Here’s the thing about migraines. Everyone suffers differently. I suppose that’s what makes them so hard to treat. I get aura so I know they’re coming. I see spots and I could be in the shower or walking and get dizzy or feel lightheaded… then hours will go by and they’ll be no pain. It’s as if a visitor you don’t want calls to say they’re going to stop by at some point over the weekend. Then the doorbell rings.

And you have no idea when they’ll leave.

Tuesday. I can’t get out of bed all day. Am I even allowed to do another injection or take more medication? I have no idea. I decide to call my neurologist on the verge of tears at 4 PM. I know I cannot suffer anymore, it’s only getting worse. And he says the words I never wanted to hear: “… you have to go to an ER. There’s nothing stronger I can give you or that you can take. You need an IV of medication. Go now.”

Do you want to know the last place someone with a migraine wants to be? The waiting room of an ER. But there I was. Sitting in a chair with a hat and sunglasses on praying the triage nurse would call me quickly, but knowing that as far as emergencies go, “a migraine” wasn’t getting me to the top of any list.

Every 10 seconds, someone in the U.S. goes to the emergency room complaining of head pain, and approximately 1.2 million visits are for acute migraine attacks. I was officially another statistic.

Eventually, I was called in and a kind nurse immediately recognized the sunglasses indicated I was having light sensitivity and turned off the lights in the room she led me into. I explained to her that it had been over 72 hours, none of my medications were working, my doctor sent me, and please for the love of God make it go away but I do not want narcotics.

“Did you drive yourself here?”

Naturally.

“What I think we’ll give you is an IV with a few medications in it, and one of those will be a high dose of Benadryl, you will need a ride home.”

No one prepares you for what it will be like. Laying there getting prepped for an IV line is one thing, but once they start injecting you with the medication. No one prepares you for the coughing, and the sheer paranoia you begin to feel as you worry you’ll throw up and not be able to keep the miracle drug down. And then the absolute calm that comes over you as the antihistamine from the Benadryl sedates you and you finally feel just a tiny sense of relief.

What I received was called a “Migraine Cocktail”talk about the saddest cocktail party anyone has ever attended.

Benadryl? Well, migraines are often described as hives of the brain and diphenhydramine, or Benadryl, is an antihistamine. The theory is that this may help (especially when given intramuscularly) by blocking the histamine response in migraine headaches. Next, Compazine (prochlorperazine) – a drug that treats nausea and vomiting – common in migraines. And finally, ketorolac (Toradol) – a nonsteroidal anti-inflammatory drug for treatment of short-term management of moderate to severe pain.

For the migraine cocktail to do the trick, it has to be taken at the right dosage and at the same time. The relief was fairly instant. I laid there for about an hour, dozing in and out of consciousness, grateful for relief, tired and exhausted.

I couldn’t speak, so I raised my hand to get the nurse’s attention to ask her for another blanket. No one noticed me. When my boyfriend arrived, all I could say was “cold” to signal I needed another blanket.

I couldn’t walk out of the ER. But the relief was so glorious that I think I want that in my house. I was pain-free when I crawled into bed that night.

“How are you feeling?” I was asked the next day.

“Afraid it will happen again.” 

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