Get Real About Migraine: Anne’s Story

Chronic Migraine Awareness Inc. is proud to present part 4 in our series #GetRealAboutMigraine written by Anne B.

My name is Anne, I am 41 years old and have suffered from migraine disease for twenty years. It wasn’t until this year that I was diagnosed with chronic migraine disease. My first migraine attack left me completely blind for eight and a half hours and I had to endure a spinal tap because there was a severe meningitis outbreak in my area. I was put on medication, but needed to see my doctor or go to the emergency room due to my nausea, vomiting and sensitivity to light/sound. Every time I would go, I’d be given a shot of Demerol and a sleep aid because I would be awake for days from the pain. I couldn’t put my head on a pillow, rest my head on my couch or even use a neck pillow.

At one point in my life migraine disease caused me to drop out of college and quit my job. I spent a year and a half in a dark room with no light or sound; with a cold washcloth on my head. Eventually I was able to go back to school and work. In December 2000, I finished my Associate of Art Degree. I continued to suffer from horrific migraine attacks throughout my schooling and while trying to work.

My most recent migraine attack cycle started on May 26, 2018 and hasn’t stopped. My primary care doctor cycled me through many medications, as well as ordered three different MRI’s. The MRI’s showed that I have a cerebellar tonsillar ectopia and the blood vessels in my brain are shrinking. I was also diagnosed with early onset menopause and it was thought that all of these things were the cause of my migraines. I was put on hormones to help with the menopause symptoms, but it didn’t help. Once my doctor had exhausted all the treatments she could give me, I was sent to see a neurologist who gave me an occipital block; but that made things much, much worse.  I called an advice nurse and she told me I had to give it more time for the occipital nerve blocker to work.  My doctor sent me to a headache and migraine specialist, and I tried naratriptan, a couple rounds of Botox and even Ajovy (with nasty side effects), but they all failed.  Because these side effects were so severe, I was told to go to the emergency room, where I was treated with pain medication and told to follow up with my neurologist.

My migraine pain got so bad towards the end of March 2019; I was up from Saturday morning to the following Friday. I was dehydrated, hungry and borderline manic from the lack of sleep. I have tried acupuncture and other alternative medications but found no relief. I was then prescribed Aimovig. I am now seeing a new neurologist and continue to take Aimovig; more MRI’s have been ordered. My hope is that one day, there will be a cure for this debilitating illness. I don’t want another person to go through what I have. If my story gives just one person hope and strength to continue fighting, it will give my suffering meaning. In the meantime, the only thing I can do is continue to be strong and hope that one day my migraines will stop.

 Thank You for sharing my story

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