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Share Your Story For Migraine Awareness

Migraine Awareness Month is right around the corner!

Awareness month is all about sharing how devastating life with migraine – an often invisible illness – can be. How has migraine impacted you? Do your friends, family and co-workers understand how challenging it is? Share your story, and make your voice heard.

As part of our campaign to spread awareness this June, we will be featuring 30 Migraine Stories in 30 days on our Facebook page. Please take a moment to share your story with us!

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  • Garangwyn
    6 years ago

    I had my first migraine about 20 years ago. It was being triggered by dairy products. Once I discovered the trigger and eliminated the food from my diet, I rarely had a migraine for years. But with the stress of life and work and the onset of Fibromyalgia, my migraines increased. Still, they were only occasional for many years.

    About ten years ago I went through a difficult divorce and bankruptcy. In addition, I took a promotion at the college where I worked, which I thought would help ease some of my stress, but instead greatly increased it. My migraines became more regular, every few months or even more often. After 2 years, I asked to be demoted to the position I had held previously when it became open again. I found that I could no longer tolerate the sensory overload of my new position; I was becoming phonophobic and photophobic, and cognitive issues prevented me from accomplishing anything when I was constantly interrupted (which I was, due to my workstation location). I made this all clear in my request for a voluntary demotion. I was looking out for my own health and hoping to make wise decisions that would allow me to continue to work long-term for the college, because I loved working there, had been there for over 10 years, and hoped to be there until I retired.

    I hadn’t been back in my old position for a year when I was returned to a “front office” type setting where I was exposed to continuous noise, interruptions and bright lights. I was told it was only “temporary,” until they could hire someone permanent for that position.

    I somehow managed for about 1-1/2 years, with my migraines becoming more and more frequent, but suddenly, one day, it was like a switch flipped. I had crossed the threshold from “episodic” to “chronic” migraines. I had a migraine, and it didn’t stop. Mine normally lasted 2-3 days; these were lasting 3-4 days, and the postdrome would barely be over when I would be slammed with another one. Because I was out of sick leave, I had to work through them, and this caused the intensity to skyrocket.

    Quitting was not an option. Who would hire a 58-year old woman with chronic migraines? I begged my employers to return me to the office I was working in when I had taken my demotion, even just inside the door of that office where I could still assist people coming in (it would have cut down on a lot of noise and lights), but to no avail. By June my brain was fried, and I truly didn’t know what I was doing any longer. I was just trying to make it through each day. The migraines were nearly constant. My weekends, if I didn’t have a migraine, were spent on the couch resting in order to face another work week. I would only have one or two days in between migraines and those were always spent trying to recover from the fatigue — and working on trying to find some way to get my employers to honor what I felt was an agreement they had broken.

    This went on for a year. I learned that what I felt had been an agreement between myself and my employers was not seen that way in the eyes of the law; they could do with me whatever they pleased, regardless of the effect it had on me. It may not have been “ethically” right, but it was their legal right. I was a commodity. My neurologist would not give me time off; she claimed she had migraines too, and had to work with them, so I needed to suck it up and do the same. I was in danger of running out of FMLA, which I did qualify for, but I used all my leave time in the first 6 months of the year, and after that was unpaid time off. And that was only when I couldn’t stand to be there because the pain was too bad. Which it was, much of the time, because of the noise, the lights, and working with the public while trying to get my “normal” work done (which required concentration and attention to detail). So, I began to realize, if I kept going this way, I would be basically working and making barely enough to meet my needs and pay my health insurance to cover all the medical visits and prescriptions necessary to keep me working.

    At length, I found out that there were no plans to hire anyone else for at least the next four years. Also, after my formal request for accommodation for a disability that was covered under the ADA was denied, due to what my administrators claimed was an “undue hardship,” I could take no more (I was also covering for the VP’s secretary, who was on vacation that week, and I had just lost my student helper); I snapped. I went out on a Workers’ Comp stress claim.

    I was stressed; there was no doubt about it. It was clear that I was suffering from a form of post-traumatic stress disorder. The thought of returning to work there would throw me into sobbing fits, and an immediate migraine. I was off for at least six weeks. During that time, my new neurologist (I had dumped the other one) gave me work restrictions requiring them to accommodate my needs. I knew what this would do: Administration would either accommodate me, which they could easily have done with some simple changes, but which they didn’t think “looked good” for the administrative offices, or they would have to let me go. At the very least, if they let me go, I might be able to get unemployment. Had I known when I took the demotion that this is what they had planned (and they knew it at that time) I would have started looking for another job then!

    When I was released from Workers’ Comp, (the stress claim was denied because, I learned, you cannot file a stress claim when it involves a “personnel issue”; it is the law), I reported to work with the doctor’s restrictions. I was sent home that very morning, and they proceeded to put me on Long-Term Disability.

    This was the best-case scenario, and one that I had hoped for. The HR Director knew that they hadn’t played fair; she also knew that there had been lies and manipulations…many of which I had documented and called them on…and although I was too tired and in too much pain to want to fight them, if I had been pushed, I would have done it. I might have lost, as I did the Workers’ Comp, but the publicity itself would have been very bad for them…because I’m sure I am not the first one to have been treated badly due to a disability that Administration themselves had exacerbated.

    Since I have been on disability — over a year now — the severity of the migraines has diminished dramatically. The frequency seems to be in a pattern: Two good months, two bad months. I haven’t figured that one out yet. My new neurologist, who specializes in Headaches & Balance issues, also suffers from terrible migraines, and is willing to work with his patients who want to try new things or are concerned about side effects. I’m currently having serious memory issues, so we are working on a plan to reduce certain medications by using herbal supplements and physical therapy.

    But my life has already improved so dramatically that, while I am not able to return to a work environment, nor am I able to work from home (I cannot maintain a full-time job, and any part-time income I might bring in would be subtracted from my disability), I am considering volunteering for a nonprofit organization and maybe even starting my own, which I could work on from home as I am able.

    I didn’t like the person I was during those last two years at work, but the experience taught me a lot. Even with the years of Fibromyalgia and chronic pain, I had never had pain like I’ve had with chronic migraines. I have learned what it is like to have that level of chronic pain for a long period of time, and how it can change people. I will now be able to empathize with someone else who has been in chronic pain for a long period of time. I know what it’s like to have everything around you fall apart — your social life, your house, your garden — and two years after their onset, I am still overwhelmed with the accumulation of clutter and the amount of cleaning and work that needs to be done, and not enough energy yet to do it. I’m just beginning to feel some energy again, and it’s easy to overdo and end up with a migraine.

    But I’m in a better place now than I was a year ago. I’m a different person now; I’m the person I used to be before chronic migraines, just a little more tired, a little slower, a little more reclusive, a little more forgetful, and a lot wiser.

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