Hi My Name Is Laurie and I Am a 45 + Year Migraineur . . .
I was officially diagnosed with complicated migraine syndrome in 1999 when I was 39 years old by one of the foremost Neuro-opthalmologists in the country at the time at Syracuse University Hospital. She found my symptoms so clinically striking that she asked me to do a Q & A for her medical students. She made it clear that the symptoms I had been experiencing on and off for 25 years, headaches, eye pain, nausea, vertigo, pins and needles, blurred vision, spontaneous color-blindness, etc., had been migraine all along. In fact, as a child I constantly complained of stomach aches to the point that my parents fed me Tums by the package. Modern research now recognizes that migraine manifests in children as stomachaches. As a teen-ager I sufferred blinding headaches but doctors were hesitant to call them migraines in those days and more likely to say they were “in my head.” Oh they certainly were! In my twenties I gave birth to five lovely children, and interestingly found relief from migraines in the years I was pregnant and nursing.
However, once my thirties hit they were back with a vengeance and with new and strange symptoms being added over time. I was around thirty when my first episode of “room-spinning” vertigo hit. I thought my world was ending and that I had a brain tumor for sure. My doctor said I had a virus. Nope – I got used to these attacks over the next ten years that would hit with or without a headache, not knowing until that later diagnosis that this was part and parcel of my migraine disease. Slowly but surely symptoms such as parasthesia of my nose, cheek, and ear began. Then the color-blindness and stabbing pain in my right eye that lasted at one point for three solid months. It was this attack that led me to my wonderful doctor and my diagnosis and relief. Treatment with amitryptaline saved me. As suddenly as it had begun my pain stopped. I was in awe of my new doctor and thankful for a good diagnosis.
Unfortunately, being on amitryptaline for over a year, and being a very busy Mom, I was not paying attention to the fact that I was gaining a lot of weight and quickly. I put on 80 pounds without even noticing. I realized that I needed to get off amitryptaline and fast. The past 13 years have been a cycle of good and bad periods trying different prophylactics and working out a “cocktail” that would work the best for me at any given time. I lost the 80 pounds and had a hysterectomy, so these things all factored in. A divorce and empty nest changed my personal situation a great deal. I ended up with the opportunity to get my PhD and am now working as a research scientist at a major university, but all of these changes have brought with them complications of their own.
My current frustrations lie in dealing with the realities of maintaining a high-powered job while having a very real day to day disability. With the help of good doctors and great prophylactic medications there have been months at a time where I have been barely bothered by a headache. And then there are times like now, when I have had a headache for twelve solid days and nothing is working. Am I going to have to go on disability? While I have the coverage, this seems like an impossibility to me when it comes to me and how I think about my work! My work is MY WORK, nobody else can do it, they need me, I need it, I can’t just walk out now! Of course, this kind of think doesn’t help my headache. My doctor wants me to take more sedatives and go to sleep and I am saying NO, I have to go to work, I pay you to keep me on my feet! I am at the height of frustration right now. I feel like if I give in this time I may not ever get it back, this might be it for me. Can you tell that I have a headache as I write this? Frustration is written all over this. That is one of the things that I want to contribute through my story.
Migraine is frustration. Frustration when you have no diagnosis at 15 and your head is exploding but nobody understands. They think you are making it up. Frustration when you have a young family and the world literally starts spinning and you have no idea how to cope, laying on the couch because you can not possibly move, while you hope your family is going to do OK without you. Frustration when you have wrong diagnoses and no answers for three months of excruciating pain in your eye when your son is going through his high school graduation. Frustration when your cure is your nemesis and causes you to gain 80 pounds in a few months. Frustration when the symptoms keep piling on as the years pass and just when you think you are on top of it with a set of medications, a new symptom or side effect tumbles the whole thing. Frustration when you have fought through all the pain and reached major life goals and find yourself faced with the possibility of ultimate calamity – disability.
You might think from all of this that I am a down and outer, a negative person. No, I am absolutely not. I am about as positive as a person can get. Even when I have an intractable migraine and land in the ER I am usually a little too positive to be believed. That is likely what has gotten me through 45+ years with migraines. I just share the frustration because I think it is good for us to do that because we are the only ones – folks here that are reading this – that really get it. I have a daughter and son with migraines and my mom suffered with them. My Mom has passed on and my son and daughter aren’t into it far enough to realize the impact.
I hope that there will be more stories of women in the workplace and how they cope. This has been such a difficult thing for me to traverse. To everyone . . .