Editor’s comment: A significant number of fibromyalgia and ME/CFS patients also experience migraines. Because June is Migraine Awareness Month, Celeste Cooper has kindly shared her personal experience of living with migraines.
Reprinted with the kind permission of Celeste Cooper, RN.
As migraineurs, we go through many trials. Not just with pain and other associated symptoms, but also with a plethora of medications. So, I decided to start my story with an encounter. My neurologist decided to change my calcium channel blocker timed released to two times a day. He did this so I would have a constant stream (24 hour release medications do not actually release at the same rate for the full 24 hours), and if I didn’t tolerate the higher dose, I could go back to one per day until he sees me again. The clerk told me my insurance denied it, so I asked to speak with the pharmacist. I braced myself for the usual lecture, but something else happened. When I explained to him my neurologist’s rational, he looked at me and said…
YOUR NEUROLOGIST MAY BE ON THE RIGHT TRACK.
I, TOO, HAVE MIGRAINES.
His words were music to my ears. Here was a healthcare professional that understood exactly why my medications are the way they are. He got it, because he shared this road we all walk. His words made the bitter pill I would not get to swallow easier to bear.
I have suffered with migraines for forty-eight years. I always lived with the hope that my migraines would ease with age as did my paternal grandmother’s, but quite the contrary has happened. They have become more frequent and now I have not only classic migraine, I also have cervicogenic migraine.
My life has consisted of unpredictable severe and incapacitating pain, vomiting until breaking all the blood vessels in my face, accompanied by IBS attacks as my body revolts against the enemy within. My blood pressure has dropped out of sight, literally.
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I have always needed accommodations. I was the kid embarrassed by having to raise my hand to go to the nurse’s office, stopping by the bathroom to vomit then laying on the cot waiting until I could get home, hoping I didn’t lose my lunch or my bowels on the bus. I was the young adult who had to retreat to a dark room while in college and miss classes that I should not miss. I remember my first REAL job as a young adult and working with a very kind woman, who always made sure I had a dark place to go.
No difference came with age other than the advent of Imitrex, which has made my life more bearable, though it does not work as well as it once did. I have been made to feel that I created this problem. I have lived long enough to be judged as a neurotic middle aged woman who couldn’t deal with life, and I have lived knowing the statistics of having a stroke as I age into later life, because I am a migraineur.
My brain has felt ready to explode, I have prayed for a hot poker to relieve the pressure behind my right eye. If you are a migraineur reading this, you know exactly the other things I have prayed for as well. I know what transitioning is. I have lost my vision; have prodromal (early symptoms) of eye lid dropping and my right eye crossing. Sometimes after vomiting, it will move to the left, that is when I know my nightmare will soon lessen. I have tried every drug known to man to prevent them; nothing works.
I have been poked and prodded, promised miracle injections that didn’t work. I have had Botox(T) in my neck, which rendered me in so much pain I cried every day until it wore off, that was several months. (I will clarify that the Botox was to treat my cervical degeneration, not the migraine protocol.)
Yes, I have lived the migraine life. There is no other pain like it, and I have plenty of other pain conditions to boot. We all know that even after an attack leaves, we do not feel like tripping through a field of flowers as pharmaceutical ads imply—If only. We have come a long way in understanding them, but we have miles to go before we sleep.
Help change the world. Raise awareness for migraine treatment and prevention. Join a group like the AHMA, follow AmericanHeadache Society or others. Even if you don’t have them often, you know you never want them again.
Source: TheseThree.com, Blog posted June 14, 2014.
About the author: Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body, Wounded Spirit, Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy. You can read more educational information and about her books on her website, TheseThree.com.