Migraines: I really do hate them
My birthday in June 2006 was pretty much like the previous years’ except for one thing; I had been having these horrific headaches and getting bloody noses. At the time I was in my 18th year of working as a Legal Secretary, 9 years with this particular law firm. I figured that my blood pressure must be through the roof so I made an appointment with my doctor to get everything checked out.
Blood pressure is good, everything else is good. Great. He sends me off to have a CAT scan done of my head just to be on the safe side. The results come in on Friday, June 30th ~ which, of course, was going to be a long 4th of the July weekend for everyone, including me. Turns out I have a 5mm tumor on my right frontal lobe. He believes that it is a meningioma, but refers me to a local neurologist (who I won’t be able to see for a week). This hit me like a ton of bricks. On one hand I am relieved~I at least have a diagnosis and to me this explains the headaches and the nosebleeds. However, on the other hand I am scared to death. I lost a very dear cousin and my dad to brain tumors and I didn’t want to go down that road at all. Needless to say, I spent that very, very long weekend learning all I could about meningiomas and researching neurologists. At the time, I was living in Northeast Ohio and was able to request and get an appointment at the Taussig Cancer Center of the Cleveland Clinic. It was at my very first appointment at the Center that I learned that the headaches were in no way connected to the tumor. It took A LOT of persuasion on their part to convince me of that!! The tumor was on the right side…the headaches were on the right side…how could they NOT be connected???
Annnyways….I’m rambling…..to make this long story short, my doctors at the Center were able to convince me (??) that the tumor and headaches were not connected and they referred me to the Headache Center at the Cleveland Clinic. Thus began my migraine saga! (although I still wasn’t fully onboard with it).
It is now close to the end of July, 2006. I am still having these horrific ‘headaches’ and still having bloody noses. Dr. Lee (at the Taussig Center) confirmed that the tumor was a meningioma and they wanted to just monitor it with MRI’s and CT scans. And Dr. Samples at the Headache Center was at the early stages of treating these migraines.
By October 2006, I had to go on long term disability from my job because I was missing too much work ~ because of the “headaches” and the time it was taking me to recoup from them. Yes, the more I researched what a migraine was, the more convinced I was that I did, indeed, have this disease. By December, the tumor was beginning to grow and the decision was made to remove it after the beginning of the year. I still held out some hope that the headaches would decrease once the tumor was removed.
Unfortunately, all hope faded when the tumor was removed, I was released from the hospital and the migraines increased…..dramatically. I felt as if my life was truly turning upside down now. Before I really felt that there was some shred of hope that when the tumor was removed I would be able to go back to “my life” ~ go back to work, go back living, no more dark rooms, no more quiet, no more breaking of plans, just go back to being a mom and a nana and a wife.
It’s been 4 years now since the tumor was removed; a little over 4 1/2 since the migraines began again. I say again because over the course of these years I was able to determine that 20 years ago what I thought were stress headaches were actually migraines. I’ve learned a lot these past 4 years. Most of all, I’ve learned to be my own advocate for this disease. I still have chronic migraines. I now live in Bend, OR and have a wonderful neurologist who listens and we work together very well. (Aside from going through the IMATCH Program with the Cleveland Clinic, I have been very, very fortunate with my neurologists.) Dr. Samples was THE best doctor at the Headache Clinic. When he left….well, we’ll just leave it at that.
I hate being defined by this disease. I try so hard not to let it define who I am and what I do. And yet, in so many ways, it does. It has taken me almost 8 hours to write this because I can no longer sit in front of a computer screen for longer than an hour. It’s a trigger if I do. Being in a store with overhead florescent lights is a trigger. Doing too much in one day will trigger one. Weather. Worrying about my upcoming SS Disability Hearing (Jan. 18th) here lately has been a trigger. So migraines do define my life. And I really, really do despise that. Never before has something had such control over what I can and can’t do! Well, my kids did when they were young….but that was WAY different!! 🙂
This website and others give me hope and give me a voice! I have been blessed with a wonderful family and a wonderful man who loves me beyond everything. I do see the positive parts of this disease. I no longer take good days for granted! I no longer shrug my shoulders when someone says they have a migraine (yes, I did do this once a long, long time ago…..I am so sorry Callie!) or for anyone who has an invisible illness. I try to smile more. Laugh more. Enjoy my kids and grandkids more.
But deep down inside…….and when I’m alone…….I do cry because I really do hate them and I wish they would just go away.