For many of us, work defines who we are. Maybe it isn’t supposed to be that way, but in reality, that’s the way it is. To have a job that makes you feel like you have accomplished amazing things in a day, and knowing you have assisted in helping other people improve their lives, is the most rewarding kind of job to have. But those of us suffering migraine have an awful uphill battle. As lucky as I was to have a job like I had, one that made me feel good knowing that every day I helped others in need, it was sometimes impossible to drag myself to work with yet another migraine.
My migraines started at age 10 after a bad fall on the back of my head from a high platform. I was unconscious for four days and when I awoke, I was confused, exhausted, and had a horrible headache that made me vomit when exposed to sunlight or perfume. Plus, I couldn’t see clearly anymore and had to get glasses. But the migraines were only once or twice a year, so it wasn’t too bad. Of course back then, 55 years ago, there were no migraine medications. Only aspirin and ice. By age 11, I also developed Todd’s syndrome, aka Alice in Wonderland syndrome (AWS), but I didn’t know what this was and never mentioned it to anyone until after I was married. [Todd’s syndrome is a rare neurological condition that causes distortion in visual perception, making body parts or other objects appear smaller or larger than they actually are.]
Over the years, the migraines came more and more frequently, three or four times a year, and I noticed my sense of smell increased greatly. As my sense of smell became stronger, perfumes, exhaust fumes, smoke, and chemicals all set off migraines. My hypersensitivity started causing problems with life in general. I couldn’t go places where candles were burning, or where ladies wore a lot of perfume. When fragrance wall plug-ins were created, and Febreeze was put in everything under the sun, I became limited on where I could shop, eat, or attend events. Church was out, and even going to the post office was dangerous. The most ironic part is that my neurologist’s office gave me migraines because the staff burned candles. By this time my migraines occurred three or four times a week.
I was in agony at work. I had to work with people even though their hand creams, perfumes, clothes detergents, and hair products were making me sick. I tried to explain to everyone that it was like they were sticking me in the eye with a red hot poker, but they didn’t seem to believe me. As a matter of fact, one person would intentionally put on the strongest smelling hand cream that she could just before any meeting with me.
Thanks to the strong detergents, the headaches were daily at a pain level of seven or eight. On my pain scale, nine is unable to communicate and 10 is unconscious. I was constantly taking nausea medicine and balancing my measly triptans with Tramadol and Oxycodone just to get through the work week. Driving home was the scariest for me because I was either dealing with the setting sun or bright headlights blinding me. Yet I kept trying because I felt my job was important. I knew I was helping others! I had to find a way to keep working, so I used vacation days instead of sick days. Doing half days if possible, going in as soon as my migraine meds kicked in. Unfortunately for me, if I was hit again with a new perfume, the migraine often would come right back. The pain was never ending.
Then to make matters even worse, I started having weird episodes where I couldn’t communicate, and would have to literally curl up in a ball on the floor. These eventually turned into fainting. No doctors knew why I was fainting and tests never revealed the reason these episodes were occurring. The neurologist finally decided it was tied to my migraines. Just another unusual aura like AWS. That’s when I started missing a lot of work, and eventually the company requested I take a three-month leave of absence. At the end of the three months, my job was gone. I wasn’t really any better, so the prospect of returning to work in a new job was impossible. Over 22 years of dedication and devotion to this company - a third of my life - was over.
I was devastated for months, and fell into a depression that lasted about two years. During those years, my fainting got much worse. The episodes that were a warning to me that I might faint became shorter and shorter, until finally I had no warning at all, but would just drop in a dead faint. Then last year, I hit my head on a marble desk, and I haven’t had an episode since then. Ironic indeed. Unfortunately, the migraines continued.
For someone who put so much of herself into her job, I was lost for a while. I had been working since I was 14, now 50 years later I had to redefine myself. I immersed myself in my home, cooking, and gardening. I got a dog and spent hours every day training him. Slowly, the migraines improved. Most likely because I have very, very little contact with the outside world. I don’t go places at all anymore and probably won’t until they quit making these super strong detergents. But we have a happy little life here so I can’t complain. Although, it would be nice to feel useful again.
Could there have been a different outcome? Maybe. But it would have taken lots of empathy from over 50 people. And although many who worked closely with me tried to not wear perfume, the laundry detergents continued to set off my migraines so I don’t think I would have ever been completely pain free. I can smell these detergents from 30 feet away, and one sniff sets off the migraine, so it is impossible to have any social life. So, now I find joy in little things. The bright flowers. A cup of hot cinnamon tea. My dog’s grin when I come in the door, and our excitement when my husband returns home in the evenings. I must be content with what God has given me, and honestly, that is more than enough.
This article was written by MyMigraineTeam member Ann as part of the Member Spotlight Series. Ann likes to relax by listening to quiet classical music and soaking in a hot tub, or playing with her dog.
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