Migraines and How I Got Here

The research showing identifying specific gene markers for Migraines doesn’t surprise me, not at all. It makes perfect sense to me that Migraine is a genetic neurological disease.

The first Migraine I remember having was when I was six-years-old. At the time, I didn’t even know what Migraines were. I knew that my mother, grandfather, and great grandmother had “headaches” that made them very sick… that they’d sometimes shut themselves in their bedrooms for days at a time because of them. Eventually, it was explained to me that these “headaches” were Migraines.

Through my teen, college, and young adult years, doctors told me various things:

  • “Congratulations; you’re an intellectual. You have Migraines.”
  • “Lots of women have Migraines. All you can do is take your pain pills and live with them.”
  • “OK. You have Migraine headaches. What do you want me to do about it?”

If you have Migraines, you’re bound to have heard similar idiotic statements.

My early 30’s were a time when my Migraines because more frequent. Luckily, I found a neurologist who was said to be very good at treating Migraines. He prescribed the beta blocker Inderal (propranolol) for me. After some time to get the dosage right for me, it worked very well for several years.

By the time I reached my early 40’s, the Inderal had stopped helping, and my wonderful doctor had retired. The search for help was on again. My husband and I drove 90 miles so I could see a neurologist who was described to me as a “Migraine specialist.” If I had to describe her today, I’d call her a “Migraine sadist” and possibly a couple of other things that I can’t say here. She prescribed a medication that had horrible side effects for me and wouldn’t change it, even after nine months.

Thankfully, instead of just getting upset, I got angry. It just couldn’t be possible that there was no help. So, I started searching the Internet for information. That’s when I discovered that neurologists aren’t necessarily Migraine specialists. Someone told me about Dr. William Young at the Jefferson Headache Center in Philadelphia. He had helped her enormously.

So, off to Philadelphia (an eight-hour drive from home) we went. At that time, I was losing an average of five days a week to severe, debilitating Migraines. I cried after that appointment, tears of relief. Dr. Young told me, “You don’t have to live like this. I won’t give up on you if you don’t give up on me.” He had listened, and he had given me hope. We saw the first baby steps of progress after about six months of working on my treatment regimen. We continued to work on it. About four years into my treatment, my Migraines were reduced to one Migraine every two or three months, an improvement that had once seemed unattainable to me.

Along this path, I came upon opportunities to help other Migraineurs learn about our disease, doctors, our role on our health care teams, treatments, and more. Along with this came opportunities to offer support to Migraineurs and become involved in advocacy efforts on behalf of Migraineurs. I had never dreamed of any kind of career in this field, yet here I am. For the last ten years, I’ve studied, written, talked with Migraineurs online and in person. I was given the opportunity to turn my journey with Migraines toward a path that allows me to help others whose Migraines or headaches are disrupting their lives and their wellbeing. Because I started attending medical conferences to learn more, I’ve been fortunate enough to develop relationships with doctors and researchers who are leaders in this field and are willing to share information, help me understand new research, and translate what I learn into articles and other content that we all need in order to work with our doctors as treatment partners.

Yes, Migraine is genetic. It runs in families. Both of our daughters in-law and three of our grandchildren have Migraine disease. I am determined that their lives living with Migraines will be easier than mine has been. I will neither back down nor give up. This disease will NOT win.

My journey is ongoing. At this time, there is no cure for Migraine disease, but there are many treatment options that make the disease manageable. There may come a time when my treatment regimen loses some of its effectiveness and my Migraines become more frequent and severe. I’ll deal with that when the time comes. For now, going from five debilitating Migraines a week down to six to eight treatable Migraines a year is the next best thing to a cure.

I hope you’ll join me on this journey. Please feel free to talk with me by posting comments to my blog posts. We can all learn from each other and support each other. Always remember two things:

  1. You are NOT alone, and
  2. there IS hope.

For more information you can view my profile, including how I got to this point in my treatment, you’re welcome to read the first chapter of my book, Living Well with Migraine Disease and Headaches, free on our site.

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

View Comments (5)
  • kathy-phelan-delaurodelauro
    6 years ago

    Sorry..forgot..I have migraine with aura and without, cluster migraines and occipital neuralgia! I also get the GON shots and Borodin!

  • kathy-phelan-delaurodelauro
    6 years ago

    I also go to Jefferson Headache Center in Philadelphia Pa! Was admitted last May and have honestly felt better! Amazing results! I take the mexelitine and DHE45. If needed, but usually don’t.need it. Was getting 5- 7 A DAY!!!Help is available. I also travel 5 hours and see Dr Mamura. Took the psych evaluate as well and I had some anger issues dealing with my disease, per the Dr. Really? Of course I am angry! Don’t feel good,miss family events, work sometimes…or non productive…Damn right I am angry! Fix me! And they did 🙂 So glad I went…and still go!

  • Teri-Robert author
    6 years ago

    I’ve met Dr. Marmura a couple of times. Seems to be a nice guy. I’m SO glad they’re helping you. 🙂

  • taralane
    6 years ago

    To all migraineurs out there, Teri Roberts book is THE book to read for information. If you have not read it, get it, or borrow it and read it thoroughly. It is the best book I have ever read and treats the reader (the people with and caring for migraine sufferers) as people directly, simply and with great understanding. It does not leave out facts, talk down to you, the patient as many Dr. written books do, and has been my bible ever since I first read it about 2 years ago. I only wish I had found it sooner.

    If you are not happy with your treatment, change doctors. Be proactive as much as your energy will allow. You are on your own time schedule, so do things as you are able and find someone who will help you fight to get your life back. I am in the process of doing that now. It is not an easy process, and it takes time.

    it is better than being in excruciating pain 5 days a week in a dark room, isolated from the world. Thanks Teri for all the work you are doing and continue to do on our behalf.

  • Teri-Robert author
    6 years ago

    Wow. I’m so sorry I missed seeing this when you posted it. Thanks for the comments on my book, and you’re always very welcome for anything I can do to help.

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