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A Migraineur’s life

I began having migraines in 1995. I was working as a tax manager in a very stressful corporate environment and decided to quit in 1996. However, even with less stress my migraines got worse and became daily. I began seeing a headache specialist and after numerous years moved on to different headache clinics in the San Francisco Bay Area. Unless you have had a migraine you can’t understand how it feels. On a pain scale of 1 to 10, my normal day would be between a 4 and 6. I went for almost 20 years without knowing what it felt like not to have a migraine. I missed many fun events with family and friends and got to the point that scheduling something was impossible. When the pain got to a 7 or greater I went to emergency room to bring the pain back down to my normal level, 4-6. I would try anything a doctor recommended out of desperation. I became severely depressed! I had no life. I tried all types of medications (abortive and preventative), Botox (before and after FDA approval), nerve block, in-patient hospital stays for DHE (2 times for 5 nights each time), alternative medicine, various diets, nutritional supplements, Chinese medicine, massage, chiropractic, bio-feedback, and a Cefaly device I purchased from Canada before it was FDA approved. I lived on pain and nausea meds for a long time but nothing helped the unimaginable pain keeping me in bed. I won’t even get in to the horrifying sides effects from medications I’ve experienced. After all this nothing helped but I kept reading more books about migraines and treatments and doing researching on the internet. Thankfully, (from my pets Veterinarian) in early 2013 I learned about neuro-stimulator implants at the Reed Migraine Center in Dallas Texas. I flew there for a seminar, came back for a one week trial and had the permanent implant put in July 18, 2013. I paid out of pocket for this since my insurance would not cover it. It was worth every penny! I got my life back! It’s not a cure but a way to manage my daily migraines. Now that I can function as a real person again I am volunteering my time as the accountant for the non-profit organization Miles for Migraines. I would like to give back to help raise money for migraine research to hopefully one day find a cure to the mystery. Migraines are not just a headache!

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

  • Kim Leonoudakis author
    6 months ago

    Important update: I was able to CURE my daily migraine of 20 years. My occipital and supraorbital nerve stimulator implant gave me 80% relief and I’m grateful for it but I do not need it anymore. I now know that there are many causes to chronic migraine. I now know that migraines are a symptom. I wish I knew this years ago but every step in my journey lead me to being healed now. Please believe you can cure yours too. Don’t give up searching for the causes because there are many infections and other things that can cause them. Mine were Lyme, Babesia, Bartonella, and CIRS (mold illness). If you have not seen a lyme literate MD to rule these out I suggest you do. Migraine is a common symptom of lyme and co-infections.

  • Leynal
    5 years ago

    Wow this is a really great story thank you so much for sharing. I’m interested in your nonprofit organization and also finding out more information about the device you had put in. I have chronic daily migraines and a lot of the pain is in the back of my head and my left temple. Can you message me if you think this might be good for me to look into? Thank you so much and many blessings ;)))

  • Kim Leonoudakis author
    5 years ago

    Hi Leynal,
    Thanks for the message. I would recommend checking into the implant I have. I believe now you can sign up for a web seminar online. Go to reedmigraine.com. I had to fly to Dallas to go to a seminar so now it’s easy and cheaper. I am so happy I did it. Nothing else worked for me as you can tell from my story I tried it all. If I only had the leads over the occipital nerves then I would still have migraine pain. So definitely having the leads over my eyebrows was the key for me. I had constant burning pain in the back of my head and I can keep my stimulator on low in that area and haven’t had pain there since I had the implant. I can control all four leads separately. It can’t hurt to check into it. The seminar doesn’t cost anything. Now that I have my life back I’m doing accounting work again. I volunteer for Miles for Migraine. you can check out our website at milesformigraine.org. We are the only non-profit in the US that does races to raise money for migraine research. Our website is being updated and soon my story will be on it. We are hoping to have 3 races this year, San Francisco, Philadelphia and New York. Best of luck and let me know if you have more questions. Kim

  • Kim Leonoudakis author
    5 years ago

    Hi Katie,
    Thank you! I’m really enjoying working again and being able to give back. The reason my stimulator is helpful for me is because it’s NOT just implanted in the occipital nerve area in the back of my head. I have 4 leads. Two are in the back of my head and two are in my forehead, supraorbital nerve region.
    Kim

  • Katie M. Golden moderator
    5 years ago

    Kim,
    What an amazing story!! I am so glad the neurostimulator has helped you. It tends to be most helpful for those who experience their pain in the back of the head (or through the Occipital nerve region). For anyone else reading your story who wants to know more about this procedure, here is a link to several surgical options for migraines: http://migraine.com/blog/surgical-approaches-to-migraine/

    Of course, every person is different and it’s a very personal decision to chose surgery. I’m so glad to hear that it is helping you to manage your Migraines better! And even cooler that you are able to use the time and energy you do have to work on Miles for Migraines, what a great cause!

    -Katie
    Migraine.com Moderator

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