Living with chronic migraines – but you don’t look sick!

It’s nearly 8:00 am and I’m showered, dressed, have a cup of coffee and a load of laundry in the washing machine. I wish this could be the case everyday. I love early mornings. But alas, another migraine kept in bed most of the day yesterday. It’s not even the migraines anymore. It’s the dizzy spells and nausea that come with it. It literally comes and goes. One moment I’m sick as a dog, the next, I’m ready to get my day going.

This is the part I have trouble explaining to doctors. I did some research and migraines have now been declared to be as debilitating if not more so, than strokes or heart attacks. That gives me a bit of relief to know that I’m not alone in the struggle. I see my doctor next week for a follow up. I’m hoping we can go back to the drawing board on what medications to try. The mirtazapine does nothing for me. I gave that up a couple of weeks ago. It just made me sleep 18 hours a day. And who can be productive on that schedule? I also read one side effect is weight gain. Which is the opposite of what I want.

I think I’d like to try the amitriptyline again. It’s one of those drugs you can take as needed and you don’t need to constantly increase the dosage. The Zomig has stopped working. I can’t stomach the Cambia powder. And before you even suggest it…

Nope. I’m not going to be talked into Botox injections. For one, even with 80% coverage of benefits, it would cost $200 every twelve weeks. And that’s money I just don’t have right now. Or like ever in my current line of employment. My rent went up. So did the power bill. And it seems, everything else like the cost of food is on the rise too. Does it ever really end?

One the reasons I’m still off work is that my former doctor had requested that I work from home on a permanent basis. WCB disagreed with this decision. I was put back on the employer’s benefit plan. But that will run out soon. If I don’t get on long term disability, I’ll have no choice but to return to work. The caveat?

My employer refuses to let their staff work from home on a permanent basis. Our Premier is pushing people to go back to work as soon as possible. There’s just no compassion really. People don’t care if you’re sick or living with a disability. They’ll cite performance issues to push you out.

So, I’m looking at all options to carry me through while I figure things out. In a simple world, if I could just find work I could do on my own schedule from home, that would be amazing. The hardest part in the world right now is keeping to some kind of regular schedule.

Last night for example, I wound up getting out of bed around 1 am and I’ve been up since. I lazed in bed most of yesterday. Sometimes a migraine can feel like a stroke. When you lift your head or open your eyes, you instantly feel sick or fall right back into bed. I think the vertigo might be the worst part of it.

Part of the problem with migraines is the whole “you don’t look sick” or “you’re not sick 60% of the time”. But what people don’t realize is that even you’re not in migraine state, the rest of the time, you’re in that fog or hangover state. Sometimes that part is even worse than the migraine itself.

My worst migraine in my life happened after a trip with my friend to Calgary to see a concert. I wound up in the hospital with what I thought were stroke like symptoms. Every time I lifted my head up, or opened my eyes, I got sick. I mean, I had to call 911. I could the look of the paramedics face when they said, “Oh, it’s just a migraine.”

I felt validated when I nearly puked on the guy’s shoe. They finally believed me when I said I “got sick every time I opened my eyes.”

Good days have been far and few in between. And even though it’s dark and dreary outside, I feel like I can get a lot accomplished today. I forgot how much I love early mornings. Watching the sun rise. The world is quiet. There’s very little traffic. It’s serene. We have lots of trees around which means lots of birds. Even the gulls don’t get up that early in the morning.

And so, this is where I am this Thursday morning. Thinking about the future. Trying to reach out to former colleagues, friends and network as much as I can on the good days. And asking you, my dear readers, to pass on the word that I’m looking for work in marketing that I could do from home.

Do you live with migraines? If so, what have you found that works for you for treatment?


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10 thoughts on “Living with chronic migraines – but you don’t look sick!

  1. I can relate to the chronic migraines. I got my first migraine when I was 17. I’ve get ocular migraines which start off as auras….. my vision goes blurry before the massive headache hits. When I was in university, they labeled it as a disability so I got to write the majority of my exams in a private cubicle which was nice. I didn’t get extra time but the atmosphere was quiet.

    I haven’t tried amitryptiline and read that it can help keep migraines at bay. I believe that it is mainly used as an antidepressant but can also be used to treat migraines (and insomnia). The only medication I take is a 1000 mg dose of Tylenol when an aura hits. Do you happen to know what triggers your migraines or do they happen sporadically?

  2. I had a migraine diary going when I was working and the smoke in the workplace did it. Now it just seems to be anything. I’m on a wait list for a neurologist and hope to go in for some tests. Apparently, one of my arteries often gets enlarged. I can often feel it throbbing on the side of my head. Not sure if there’s anything they can do for that.

    And yes on starting in my teen years. Back then, they seemed to align with hormones. But then as I got older, around 17-18, strong smells started triggering them too. Like gasoline, cigarette smoke, even some cleaners. Or even food court smells.

    I feel you! Amitriptyline made me feel like sleeping at first. But then I got used to it.

    I’m not sure if getting an aura is worse than not. I’ve never had one. Just kind of hits right on. I know if I wake up with one, it’s a sick day in bed.

  3. The auras I get are like starting at a campfire… the blurriness behind the flames looks just like my auras. The aura jumps from eye to eye. Sometimes it’s both eyes. I’ve had 2 transient ischemic attacks (TIAs) in the past which are very scary. They’re like strokes but not actual strokes – more like warning signs that a stroke could happen in the future.

    We probably have different types of migraines. There’s a variety of migraines that ppl can have. For me, it’s 98% aura before the migraine. Very rarely do I get a migraine without an aura. I hope that you’re able to see a neurologist and get to the bottom of your migraines!

  4. I have been getting migrane triggers since a last few years . What I have noticed is we all need to moniter our own triggers. Like for me trigger could be lack of sleep ,acidity, long gaps between the meals or sometimes even a strong smell of perfumes of anything specific when u vulnerable to migraines. They say sometimes it’s also because of sinuses or any other additional meds u must be on ,which builds up acidity n all. It’s really hard to find ur trigger sometimes. But if you consciously look back on each history of migraine u might know many of the few reasons of your migraine trigger. I dnt know if there is any permanent cure for migraine, but will keep working to find solutions as its really a debilitating condition and one of the worse feeling when u have throbbing headache ,which is sensitive to noise, light and smell . On top of that u are acidic and nauseous. Tc

  5. Yes I have done journals in the past. That is sort of what this blog is. Have written lots about the migraines. For me the culprit right now is an enlarged artery. So definitely need to see a neurologist. Hope you have found some relief!

  6. Yes I am fine for now with Ayurveda meds. Never heard about enlarged artery being the problem for migraine. Neways ,as you said get the right treatment and hope you get some relief 🤗

  7. I understand completely your suffering. However, I would highly recommend to seek a pain management resources. It does help me. There are many tips that can ease the pain… Good luck

  8. Yea, the pandemic freeze it all. However, consulting a trusty websites from hospitals and doctors that include a lot of tips to ease the pain, helping a lot.

  9. I have. I’ve tried dozens of medications over the years. I just need to see a neurologist. Thanks though for the support. This post was more about offering suggestions for others on how to live with migraines.

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