We are coming to the end of June which is migraine awareness month. I thought I would write a bit about my chronic migraine experience.

My migraine journey started when I was 20 and I had about 6 or so migraine attacks a month back then, not counting hormonally triggered migraine attacks that I was not aware were migraine attacks because they never had an aura. I Thought at the time with migraine with aura the aura always happened because it always happened for me but that isn’t the case at all, it means you Get auras but not necessarily with every migraine attack.

Anyway, I started at a fairly frequent state perhaps because I also have fibromyalgia and that made my sleep erratic and often in a state of sleep deprivation- massive migraine trigger. I progressed to chronic migraine over the next 6 years. And never got out of that state.

Text: A little bit about my chronic migraine experience
Image: Woman with dark curly hair in a blue shirt curled up on a couch

Chronic migraine disease and society

People suck sometimes, just the way it is.

People have doubted my pain. People have not understood how my migraine attacks can be so frequent because they didn’t Believe migraine attacks Can be that frequent.

I have been belittled. Mocked. Discriminated against. Faced a Lot of stigma. And my self-worth was slowly eroded over time. I felt Personally like I was a failure because people made me feel that way and I believed them. One boss told me I was failing myself, my co-workers, and my customers (And that was by far one of the nicest things she had to say, to be honest).

Work life

I tried so very hard to conform to a healthy person’s life. To hold onto a career and work full-time. And I always failed. And that made me feel so worthless. But I kept pushing through the pain hoping desperately my neurologist would find something, anything, that would reduce the frequency or intensity of my migraine attacks. It didn’t happen.

I would burn out. Over and over. And be punished when I went on a leave of absence every time I returned to work. I shrank my life to only include work and going home and crashing. Nothing else. And I existed in this survival mode for a long, long time. I was depressed. And I was suicidal. It took one ultimatum from my boss to just tip me from suicidal ideation right into a suicide attempt. That I survived and it changed nothing- not pain management, not work, not anything. And that destroyed any sense of hope for my future. My depression became severe. And my suicidal ideation became constant.

I did eventually find a new doctor who sent me to a pain clinic. That pain clinic helped with pain management and helped me with my depression. I ended up working part-time since that was the only solution offered to me by my workplace. And I am not sure that helped since the new role wasn’t that suitable.

I would say that some workplaces may offer better accommodations. Some workplaces might be more flexible. They might offer flex work or work from home options. It depends on the industry you work in and the company you work for really.

Vestibular migraine and PPPD

I have migraine with aura, yes, but also I did develop vestibular migraine attacks. They were not as often. They did get more frequent when I had to commute to work so that was always a problem. I found the symptoms tolerable, relative to pain anyway. But then, four years ago my vestibular symptoms went nuts and just never, ever stopped. I have no idea why. But I couldn’t function, drive, or work.

I did a crapton of vestibular tests. I bombed the caloric test but every other one was fine. Eventually, they said in addition to the vestibular migraine attacks I also have PPPD. I don’t know if this is the case, or not. But I do know that they are sending me for vestibular rehabilitation which I know will likely help a lot.

Why did this happen? Who the hell even knows. That’s just the way it is. Assuming the diagnosis is even right.

Change and unpredictability

Here is the thing, even when I find something that kind of works for intensity (but not frequency in my case) it never works forever. My brain adapts and back to the way it was give or take a couple of years. And I have to start all over again.

Symptoms also change all the damn time. My auras change. I have had severe nausea and vomiting issues for years and years and then… not so much. A whole lot of the symptoms can change abruptly. Like the whole vertigo situation. It just isn’t predictable at all.

Treatment for chronic migraine is not easy

Treatment for chronic migraine disease is complex. It can take a very long time to find a preventative that does anything. But now we do have CGRP meds to help us, if you can afford them, which I can’t. Often we end up on more than one preventative and, hey, add in botox while we are at it.

We do lifestyle changes, alternative treatments (depending on what we can afford, supplements and vitamins (depending on what we can afford).

And sometimes all of that only leads to a modest benefit. Or none. But some people do have effective treatment. And some of us just never have.

It’s a problem

Living with chronic migraine is extremely difficult. I wouldn’t wish it on anyone. It isn’t just coping and trying to find ways to dampen the pain or symptoms and have some semblance of a life. It is that it is always a problem for others. A workplace Problem. An employer Problem. A Problem for your insurance company. A Problem to treat for a neurologist who ‘runs out of ideas’. And it is a chronic pain Problem, which means since it isn’t episodic society has no sympathy for it and expects you to function like an entirely healthy person, with a smile, and never missing a day. Completely functional even when they would never expect someone with low episodic migraine attacks to do anything with them. And that is definitely a Problem.

I don’t want sympathy. Or pity. I would like people to understand the profound impact chronic migraine disease had on a person and their life. The impact on mood, career, the financial instability, their families, their relationships- it hits it all. That isn’t to say we do not work very hard to have a semblance of a life when we can tolerate the pain. Or do activities that distract us from the pain. The pain doesn’t stop so we have to learn how to cope the best we can somehow. At least those of us with daily migraine attacks. With those with over 15 but less than daily, I expect they try to shove as much life into non-migraine days as they can which then might, well, trigger a migraine. It is a real balance between doing things and trigger avoidance, managing well-being and managing stress.

I write about the suicidal ideation and the suicide attempts I had because that also is not rare. I can tell you for a fact the pain we endure is not taken seriously. My first suicide attempt my doctor said it was an extreme reaction to pain- then did nothing about it. That was it. Our pain is minimized.

We are often declined for disability through work insurance or the government. No one believes our pain matters. And they all think we can function with it forever and work with no problems… and then, what, are shocked we are depressed and suicidal? I mean Really. We have lost so many people in the migraine community to suicide. And I understand why because I almost didn’t make it. I hope that one day that one loss of life is unacceptable. I hope that one day we value chronic pain management and quality of life.

International Suicide Hotlines

Chronic migraine awareness: stigma I encountered
Chronic migraine statistics and impact
Yeah, chronic migraines suck

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4 thoughts on “A little bit about my chronic migraine experience

  1. Thanks for sharing your journey with us Nikki. What you said about your work life resonated with me as I struggled in the exact same way too. They would put so much pressure on me & I in turn would put additional pressure on myself. It was a vicious cycle. I’m much happier now that I work from home & don’t have to keep explaining myself to an employer. Kudos to you for writing about how you’ve dealt with suicidal thoughts. It’s not easy to share, but it’ll help so many people in the long run who knows how it feels.
    Tasha Marie x

    Liked by 1 person

    1. I think a lot of people with migraines would benefit from flexible work environments and working from home . Maybe that will be more feasible these days now that some employers see it is possible, I hope so anyway.

      Liked by 1 person

  2. Nikki, I have suffered from severe migraines as well and have tried many things that did not work for me until I tried the Allay Lamp (allaylamp.com), commonly known as the green light. It has really been a game changer. At first I thought it was just another gimmick, but I realized it really worked. If you decide to try it, allow 3 to 4 weeks before you start noticing a difference. I have it by my bedside and turn it on every night when I go to bed. I am suggesting this only because I found it worked for me and I hope it will help other migraine sufferers. I have no connection to Allay Lamp and I do not receive any compensation from the company.

    Liked by 1 person

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