Educating Employers on Migraine Disease

I have suffered from migraines for almost 20 years and have tried every drug available but now I have the worst migraine ever. January 18, 2010 I got the worst migraine of my life and ended up being put in the hospital in February for 5 days of DHE. It did no good and I spent 2.5 months on medical leave as I lost my peripheral vision in my right eye and was so dizzy that I couldn't walk without help. I walked into walls and the pain was unbearable. It got a bit better until January 5, 2011 when it became a 20+ pain again and I have now been out of work for 8 days. My migraine specialist just keeps throwing drugs at me and I have only actually seen the "doctor" one time in a year. I am currently looking into a neuro stimulator that may stop the migraine but have heard from my Nurse Practitioner that I can never have an MRI as it will rip the leads from my head and kill me. This is very scary but if it will stop these migraines I am almost ready to try it. I am 53 years old and have been through menopause so my migraines are not going to get better with age.

I now have to deal with my employer who refuses to make ADA accommodations for me so that I can continue to work in some capacity. I want to start a program to educate employers on the debilitating effects of migraines on their employees and what they can do to help their employees who suffer from sever migraines. Has anyone started a program like this for us? I am so tired of fighting with my employer to make my boss understand that I am not lazy but rather that I suffer from a disease just like a cancer patient and I want to be treated fairly. When I can work I work very hard and very long hours but on those days when I must lay down and take my medications I do not want to be punished or seen as a slacker. Today as I write this I am suffering from a 11+ migraine and am sick to my stomach with blurred vision.

My poor family doesn't know how to deal with my migraines as they have never been this bad before. We need to educate employers that this is a disease and that we should not be discriminated against. I want to work but the stress that my boss is putting on me with constant threats of termination for missed days is adding to my migraines. I want to be the spokes person to advocate for migrainers around the world and visit with employers to try to educate them. We need an advocate to help people to understand that migraines are not "just a headache" but that it is a disease that causes real pain and can cause visual problems which can keep us from driving and working. I want to start that program and would like help and ideas from others as to what would be a good way to start this program as I am not a physician, just a migraine sufferer.

Thank you for listening to my story.