What I've Learned: Six Years of Chronic Migraine/CDH, One Day At A Time
Migraine disease became chronic for me about six years ago when I was 25 years old, ten days after I'd gotten engaged. I also developed Chronic Daily Headache at that time. I was so lost in the beginning and trusted whatever anyone told me. I didn't know what was happening and trusted the system to take care of me. American culture/society sets us up to think that doctors have the answers and the treatments and they will make us better. I eventually found that I have to be my own advocate and search for the answers. I have to do for myself...no matter how badly I feel. My health is my responsibility.
What I've learned is that the more brains working together on my case the better. I've had several "second opinions" from headache/Migraine specialists. I think the key is to be open-minded. Treatment is not one-sized fits all, and I had to learn to be willing to try new things.
I've gone to a nutritionist to be tested for foods that my body is sensitive to that might trigger me. Under her guidance, I completed an elimination diet that led me to discover food triggers I would have never guessed were making things worse for me. Who knew cinnamon could trigger a Migraine in 0.2 seconds?
I learned how to become a pin cushion by trying out-patient IV treatment, multiple 14 day long hospitalizations with round the clock IV treatment. I'm currently doing small amounts of Botox every 8 weeks and trigger-point acupuncture every week.
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I practiced bio-feedback until I figured out how to make it work for me. This has helped me to learn how to get through difficult times and to tolerate difficult procedures. It did not stop my headaches or Migraine attacks, but has become a tool in my toolbox that I use so regularly that I don't think about it.
I learned a gentle (non-spiritual) form of Tai Chi that my husband even says is calming when he participates. Calm + Chronic Migraine = Good.
Connecting with others who have Migraine/CDH is probably one of the most important things I do. It helps so much to feel connected to others who understand when so many people do not understand. I have made life-long friends...ones that have sent me packages from across the country when I have not felt well...ones where we call each other sister and mean it. I have learned so much from my fellow warriors by sharing things that helped. I got the gentle Tai Chi DVD recommendation from an online forum buddy.
Reading blogs and staying connected on Migraine sites like this one helps me stay on top of current research and thus my management so that I can competently talk with my specialist and understand what he is doing so that I do not feel at "his mercy" so to speak. We are a team in every sense of the word meaning we both contribute to my treatment. He has the experience, the research credentials, & education and I am the expert of my body and what I've learned.
Counseling has also been a vital part of my Migraine management. My husband even started seeing my therapist as he realized it would be helpful for him as well. We also sometimes do joint treatment sessions. Disabling, chronic Migraines changed my life completely from a vibrant driven young speech-language pathologist to a person who sometimes feels imprisoned by her house and spends most of her time in bed/on the couch with her loving three cavalier king charles spaniels. So, we both needed help in that adjustment and continue to need on-going support as we learn how to navigate a caregiver/dependent relationship in addition to a husband/wife relationship.
The most important thing I've learned is that though I did not chose to have this disease, I *can* chose how I respond to it. I can gripe and complain and feel sorry for myself and feel that everything is against me. Or I can live fighting for myself, learning and trying to make things as best I can. Limitations are a part of the life of a chronic Migraineur. But, in the midst of it all, I can live and find hope...one day at a time.
Which are you most sensitive to?