Skip to Accessibility Tools Skip to Content Skip to Footer

Still searching to get my life back…

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.

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

  • melissadwyer13 author
    8 years ago

    JannyL, I really want to thank you for that comment. It helps a lot having people who understand and who have been in my shoes, who know that these DO steal life from you. Your positive post was exactly what I needed as I have had a terrible week of suffering. Although, I have only been suffering 6 years, the daily migraines take so much from me, I can’t imagine what you’ve been through dealing with this debilitating disease for 48 years. Have you tried anything that you have found some success in dealing with them? I would love to chat with you more about this, because like I said you said exactly what I needed to hear. Thank you for your post and support. It meant more to me than you know..

    Melissa

  • smilebig@embarqmail.com
    8 years ago

    DEAR Melissa, I truly understand. I too have gone to Diamond (and everywhere I could find) seeking THE answer. So far, in my 48 years with migraine, there isn’t ONE. Do what works for as long as it works then move on. Keep seeking but it is a hard road. I have been to the brink of suicide from the pain, helplessness, and frustration many times – but I couldn’t do that to my loved ones! Keep before you all the good things in life. Migraine doesn’t kill its victims – it steals their LIFE! Fight back by being as positive as you are able as often as you are able! In every migraine I pray for an end and eventually it does pass. Fortify yourself with good and grow your faith on the good days. Don’t allow others to make you feel hopeless or weak because THEY do not understand. You can and will continue to fight and search and grow stronger. Yes, I even had a doc throw my chart at me once in his frustration. I do NOT use ERs anymore because they are SO poorly equipped (physically and personnel) to care for us. Find a compassionate doctor whom you trust, and build a partnership. It ISN’T easy, but it IS our life an migraineurs. Best wishes for a fulfilling life! JannyL

  • Ellen Schnakenberg
    8 years ago

    Hi melissadwyer13

    We’re so glad you’ve found us. I hope you’ll keep us informed as to your progress. Hang in there. I’m so glad you seem to have some support. Have you considered seeing another doctor yet since last we talked?

  • Melissa Dwyer
    8 years ago

    I met a great doctor in the hospital inpatient (my family doctor doesn’t go to hospitals so everytime of the many times I have been admitted I’ve been handed a random doctor) he wanted to help and work with my specialist… well, to begin the MAO inhibitor the specialist (who is a neurologist, pain specialist, and psychatrist) had to take me off everything he was trying because of the drug interactions, which I suppose upset the doctor because I was admitted last week after an ER doctor (they all know me very well in the ER) refused to treat me, he refused to treat me. So I sat in the hospital for over 24 hours just to hear I was being released with my pain a ten, the same way I came. At least they were keeping me on IV Zofran to control the vommitting. I begin the Nardil this weekend, when the pharmacy ordered it and gets it in. The doctor said I may still have a rough six weeks for the full effect of it. The food and drug interactions are still scary to me. I had to order and wear a Medical Alert ID bracelet for if any reason I can’t talk an ambulance or treating Emergency doctor would have to check ALL drug interactions before giving me ANYTHING and I have a strict diet to follow to avoid serious complications on this medication. It’s the last resort and the only thing I haven’t tried, so my fingers are crossed and my hope is resting in this medicine! I love the doctor I’m working with because he understands the pain and does his best for me to be able to control that (and the nausea/vomitting) at home. I will do anything to get my life back, I’m too young to be living like this, in constant pain in a constant dark room or hospital. I will keep you updated on the progress with the Nardil! Thank you, Ellen for your concern!

    Seeing another doctor is hard, they all turn me away due to my extensive history. =[

  • Steve L Campbell Jr
    8 years ago

    Hi everyone I didn’t realize how bad migraines were until I had a few. Its seems to effect more woman than men. several of the woman in my family have chronic migraines. I watch how they are constantly taking pills and it drives me crazy. there has to be a better way right. well check out this site I found.
    http://www.healmyheadache.webs.com
    you have to try it it works. if you don’t agree it’s guaranteed..

  • Icekap Migraine and Headache Therapy System
    8 years ago

    Sounds like you are in the same boat as many of us migraine victims. Maybe we can help you?

  • Icekap Migraine and Headache Therapy System
    8 years ago

    I don’t see any contact info for her. Maybe she will read this post and contact you? I should get an Icekap to her asap.

  • Kate Kopasz
    8 years ago

    How can I contact melissadwyer13? Her story is almost exactly like ours. I wanted to share some information with her. I can’t find anywhere to contacther or comment onher tsory on migraine.com. Can anyone help?

  • Poll