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I am not my illness

My name is Alex and I am a college student. I am studying political science and history. I love college football and basketball. I love movies and going out with friends. I have Chronic Migraines and I am not my illness.

I got my frist migraine when I was 14. I remember it perfectly. It was at church the sunday after I finished 8th grade. I had just got my report card and was going to thank god for my straight a’s. Instead I got very dizzy and felt like I was going to collapse. The same thing happened the next day and the day after that. A week later I still had the spells and my mother took me to my doctor. She told me I was just growing too quickly. After a few months I was sent ot specialists. I saw every doctor I could possibly have seen. After two very long years of being undaignosed I finally was diagnosed with silent migraines, the rarests form of aura migraines. I was promptly put on a miracle drug, amitryptaline and sent back to school. After two and a half years of only migraines during what I call the perfect migraine storm (marching band, fondue parties, etc) the migraines returned with a vengence. I was now a freshman in college.

My mother had decided if I did not get better by my junior year of high school I was not going to college. Since the drug worked I was allowed to go to school which was importatnt to me since I loved learning. I wanted nothing more than to go to college, it was just what I had always planned on doing. I finally entered my school which I love dearly and was heartbroken when I relapsed.

I spent a year and half dealing with slightly more severe migraines. Enough for me to have to actually explain to my teachers what was going on and why I might miss class. By the fall of my junior year I was gettng much worse. I had a migraine every day for a month nad not little ones. I was finally given botox injections which were a miracle. I was finally able to be myself. Too bad my insurance company decided that the drug was not medically necessary and I am migraine ridden again.

After seven years with migraines I have finally come to the conclusion that I am not my migraine. I can talk about the disorder. I no longer feel guilty for missing class. I no longer apologize to teachers for my illness. I recognize that it is an illness and it is to be dealt with, but it doesn’t get me down anymore. I don’t let it hold me back. I am going to go to grad school and then go get a job and enjoy the real world. I am not going to let my disability ruin my life or tell me what I can and cannot do. I will do my best to avoid triggers like cheese and nuts but I am going to eat what I want and that includes the delicious cupcakes down the street.

One day I have hope the energy i once had will return. I’ll be able to go to everyone one of my classes in a month. I’ll be able to go running or go to a party or even to the movies. I’ll manage to make it through an orchesta concert or mass. I’ll live my life without a day of pain. I’ll be able to live a life where no one knows of my illness not because I don’t talk about it but because it doesn’t impact anything. That’s my dream and I know it is the dream of every chronic migraine patient out there.

I do not wish anyone to have this disease but I will wait for the day when people finally understand it is not a simple headache it is more like a seizure or epilepsy. It’s a neuological disorder that can be cured. The amount of funding that the NIH spent on migraine research in 2007 is equal to only $0.36 per person with migraine. Diabetes received $49.38 per person with diabetes. Asthma received $12.25 per person with asthma. So let’s fix that and help all migraine sufferes.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • 2 years ago

    My story is very similar. I am now on the verge of disability, because I am starting to miss work so much. I am in constant pain. There has to be an answer besides my neurologist scratching his head!!!

  • Karen Christine
    2 years ago

    I just would add that “migraine prescription drugs” have only made me feel worse. So for years now, a prescription painkiller alone is my Go-To. At first hint of an aura, codeine and fiorinal enable me to deal with them.
    Karen Christine

  • Ksflynn22
    4 years ago

    Alex, my story is very similar. I started getting regular headaches my junior year of college. We ran test after test and all that they gave me was vicodin. I survived my undergrad and law school. But I had moments where I had to explain my absence or my bad mood.

    They real problems began my last semester of law school. It’s been 2 years now of constant battle to keep my migraines at bay. I use preventative medicine daily (propranolol) and daily pain meds to deal with my smaller daily migraines.

    Thankfully my insurance (health net) covers Botox which I just started in August. It seems to help I only have one debilitating headaches a month.

    All that said I am currently laid up with a three day migraine, have bailed on three preplanned activities and want nothing more then to sleep until its gone!!!

  • sandramhill
    6 years ago

    I’ts amazing what we migraine suffers go through. Thank you so much for sharing. All I can do is pray. Sandy

  • stacysillen
    6 years ago

    Alex, I am really upset that your insurance won’t cover the botox, I `\want to help you fight that! At age 46 my migraines got constant and I had a ‘migraine-related stroke’, which I noticed because I lost some vision. All kinds of tests later my optho-neurologist told me I had “seizure-like activity” in my head. I like how you make that connection there. Botox took 3 times to work, but it has been miraculous. I get break through migraines two weeks before insurance will help pay for my next dose, so now I am trying nerve blocks to stretch the relief out til the next shots. I also like that you share the amounts spent on different diseases for comparison. Nice work!

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