Still searching to get my life back...
Last updated: November 2021
My journey with migraines has been a very long and hard one... I guess it began when I was little because I remember always having headaches (not the migraines I now know, but always headaches). At age 15 I began having these absolutely deblitating migraines... I would say they were a few times a month at most back then. I went to my family practioner who put me on an abortive triptan... after a few months of that not working he put me on a daily preventative.. after that also failed, we tried a few more preventatives, but he decided he couldn't help me anymore and it was time to see a neurologist.
I went to the neurologist who first put me on Topomax and Elavil. I had some small side effects to Topomax but MAJOR side effects to the Elavil... including terrible hallucinations (and unfortuanate weight gain). He tried so many medications and I was in and out of the hospital while under his care, I think like 70 Emergency Room visits in a year and SEVERAL times where I was admitted to the hospital for a week each time. During all of those I had several CT scans, a couple MRI's, MRA, MRV, Spinal Tap, a small surgery checking for PFO (a small hole in your heart that can cause migraines). I remember my mom praying I had the whole in my heart because at least that would be something physically wrong that we could fix. If there is a test- I had it. If there is a medicine- I've tried it. He finally decided he couldn't be my doctor anymore and gave up on me, and let me tell you there is no worse feeling than a doctor giving up on you.
But he got me into Mayo Clinic in Minnesota. My mom (my biggest supporter, who had been to every doctor appointment and hospital visit with me) and me were ecstatic and put ALL of our hope into Mayo. Before this, I had been to Diamond Headache Clinic, but they didn't seem to help at all. So we drove from Illinois to Minnesota thinking that I would come back cured. I saw a neurologist there, and he ordered another MRI, and I saw a special eye doctor to check my eye pressure. Everything was normal. We had to wait a few more days to see the neurologist again, and he told me in simplest terms, "You have daily chronic migraines, Learn to live with it". I knew that diagnosis I had been diagnosed with DCM about a year and a half prior. Now, I guess I should explain why hearing "learn to live with it" was so hard to hear... I was 19 years old and had to withdrawl from college because of this. I couldn't work a job, and lived in a dark, quiet room. I did NOT have a life. So to learn to live with this... wasn't an option because I wasn't really living. I got so sick I even had to visit an ER in Mayo. I got out and we began our long, disappointed trip home. Where I felt SO low. And SO hopeless. I felt there was no hope left for me. If the "best place in the country" couldn't fix me and told me that, I would never be fixed and I would have this terrible life forever.
After that, I went to several neurologists, pain specialists, and other doctors who turned me away because of my history. They were right, I had tried everything. I don't just mean every medication. I had tried several chiropractors, naturalists, acupuncture, psychatrist, and sooo much more (I know I'm forgetting a lot). Being turned away from doctors, or having doctors give up on me.. gave me that hopeless feeling Mayo Clinic gave me. But I didn't lose hope.
I eventually found a neurologist I have been working with for about four months. He tried Botox injections, which didn't seem to have any success. And I am preparing to begin a MAO Inhibitor Nardil... which I have some mixed feelings. There isn't anything I won't try though.
I know I am forgetting a lot to add, but you get the picture.
Without my supporters, I wouldn't be here. My mom has been here every step of the way.. as has my boyfriend. I know he didn't sign up for this because when we began dating they weren't daily...
This website has helped me so much too, with the information and the people on here who UNDERSTAND... which none of my friends do. I am young and they don't get it. They think I get "headaches".. they don't understand why I need to go to the hospital, or can't work, or can't go to school with a "headache". I get a number 10 (on a 1-10 scale) migraine ALMOST every day... I'm having more good days lately, so only about 5 a week now (which is good for me). I wish people understood more. When I have a migraine, I will throw up around 50 times. I don't get headaches and I wish more people could understand how bad migraines are... that's why I'm happy I found this website, because everyone on here understands.. and there is a lot of information.
How important is migraine awareness to you?
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