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Paying it forward in the next generation

I recently had a frank conversation with my 23 year-old daughter about life with migraine. As many of you know, she was diagnosed with Abdominal Migraine at two years old. Before her third birthday, Migraine without Aura had appeared, too.

You might be thinking, “How awful!”

Yet early intervention and good migraine education paid off. Thanks to a good treatment plan and even better lifestyle management, she has never experienced Chronic Migraine, Medication Overuse Headache, or Status Migrainosus. She has never been hospitalized or even had an ER visit due to migraine.

Watching my struggle has motivated her to take charge of migraine before it can take control of her life. She has taken an active role in managing her own disease. She understands the risks and knows exactly what to do at every turn.

Here are just a few pearls of migraine wisdom she had to share:

  • Be careful who you tell about migraine. Most people just won’t get it, so save yourself the drama.
  • Don’t ever leave home without your medicines AND comfort measures.
  • Treat attacks early and don’t skip your preventives.
  • Create a migraine-friendly living environment.
  • Do what you must to protect yourself from migraine attacks and don’t stress about it.
  • Choose your career carefully. Think about the potential triggers before you commit.
  • Choose your friends and intimate partners very carefully. They will see you at your weakest, so make sure they get it and support you.
  • Become an expert on migraine. Expect to know more than your doctors.
  • If a doctor tells you something that sounds fishy, double-check with Mom.

At age 23, I’d been living with migraine almost as long as she has. Yet I was deep in the throes of Medication Overuse Headache without any idea about triggers or lifestyle management. No one ever explained that all those strange symptoms were part of migraine. I honestly believed that migraine was simply a “bad headache“. I had no idea that migraine was an incurable neurological disease. If I could stop an attack without missing work, then I was satisfied. It never occurred to me that getting a headache every day might be a problem.

As I listened to her talk about her life with migraine, I felt a deep sense of relief. She doesn’t carry the emotional scars of widespread stigma. Even though there were many people who minimized her pain, she never internalized that message. Somehow, she never questioned her own experience with migraine. I am so grateful that her experience with migraine has not been the living nightmare she saw in me.

I have felt a deep sense of guilt over all the special occasions I missed and the many times she needed me when I was too sick to respond. Although I wasn’t able to always be the mom she needed, she paid attention. She learned from my experience and resolved to keep migraine from taking over her life.

Thankfully, my granddaughter has a mom whose life isn’t controlled by migraine.

That is my legacy.

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

  • Maureen
    3 years ago

    Dear Moderators,
    I appreciate your efforts to be reasonable and “moderate”, but I really think this comment needs to be removed. I can’t even.

  • Joanna Bodner moderator
    3 years ago

    Hi Maureen,
    We absolutely recognize this comment is very sensitive for members to view, but we feel it is important to maintain an “open” conversation and to address even the posts that we all STRONGLY disagree upon. Please know that we will of course continue to monitor this and should the conversation progress to be in direct violation of our “community rules” any further comments will immediately be removed. Please however, do not hesitate to contact me with directly with ANY questions or concerns at contact@migraine.com. -Joanna (Migraine.com Team)

  • Julianne
    3 years ago

    This is something I’ve never understood. Why do people with a clear family history of migraines insist on reproducing? I wouldn’t wish this pain on my worst enemy, much less my own child. It just seems incredibly selfish to me. The amount of migraine sufferers in the world could be greatly reduced and the chain of suffering could be broken if people with inherited headaches didn’t reproduce and pass them on.

  • Piglet
    3 years ago

    By the time I had my first migraine at age 40, I had already reproduced twice, so there’s that. I am now chronic because like Tammy, I just didn’t know how not to be. And sometimes I agree, if I had known, I might not have made a choice to have children. Knock on wood, so far, neither has migraine. My husband also has astha. Diabetes is all over my family. Millions have epilepsy. Millions more have mental illness.
    Two of my first cousins have MS. My son has CRPS, which is just about the most horrific disorder one can imagine and also can include migraine as just one facet. So you see, with human beings, there is almost always something in your genes that will put you at risk. I can tell you from experience that as bad as it is, migraine is not the worst human condition or the worst genetic human condition. Also, should a person with one migraine in a lifetime not reproduce? One a month, two, ten? I’m glad you posted, it is appropriate to think about this,mbut realize we all have our risks and are entitled to our choices.

  • Tammy Rome author
    3 years ago

    Julianne,

    I respect your right to your own opinion. However, I disagree and would like to offer a rebuttal.

    1. Migraine affects 12% of the population, most of whom don’t even know they have migraine or that it is genetic.

    2. Just because someone is experiencing severe and debilitating symptoms does not mean that their offspring will, too (and vice versa). According to your logic, my parents should have never conceived (and thus, I, my children, and grandchild should not exist) because everyone in my father’s family going back generation had migraine. Considering all the hard work I’ve done to advance the cause of migraine awareness, surely you don’t think that my existence was a selfish mistake.

    3. My children do not resent me for giving them life, even if it means they live with migraine. In fact, it is precisely because I have lived with such disabling symptoms that we were able to get them diagnosed early and treated so that migraine did not “ruin” their lives.

    4. If we were talking about autism, mental retardation, any other inherited condition (even allergies!) opinions like this would be highly offensive and considered eugenics. In case you don’t know, the philosophy of eugenics is what drove Hitler to try to create a “master race” free of traits he considered defective.

    5. I just spoke with one of the country’s leading headache doctors about this very issue last weekend. When asked about this issue, Dr. Robert Cowen told a room full of migraine patients to not let a migraine diagnosis keep them from starting a family and that having children was one of the best decisions he ever made. I completely agree with him and so do my kids.

    The chain of suffering will be broken when migraine is understood by all to be the serious neurological disease that it is and when investing in research for better treatments and a cure become the priority of every country in the world. That’s a cause worth fighting for.

    Please reconsider your position.

    Yours truly,

    Tammy Rome

  • Joanna Bodner moderator
    3 years ago

    Dear Julianne,

    When discussing chronic health conditions and healthcare, we realize that comments and topics may be very sensitive and emotional to our members. Everyone is certainly entitled to their own opinion and no everyone will agree on a topic, but we strive to maintain a supportive place here at Migraine.com. Comments and posts should always remain respectful and we appreciate keeping the judgement of other peoples’ opinion/decisions to a minimum.

    We appreciate you being a member of our community and truly hope you understand our guidelines/policy.

    Thank you,
    Joanna (Migraine.com Team)

  • Maureen
    3 years ago

    Bravo! What a fine legacy. Your daughter sounds like a woman full of compassion, for herself and others. Be prepared and don’t expect things from others that they probably can’t/won’t give you. That is truly being gracious. Isn’t it rewarding to see your children as fine adults? Good job!

  • Donna Geyess
    3 years ago

    “Be careful who you tell about migraine,” is sound advice. I have never really talked about my migraine until recently when it started to affect my work. Many times I have to stay and finish my work even though I am starting with a migraine. I take my medicine and muscle through. Then I go home and collapse. Of course, I look ill and people will ask me if I’m okay. When I tell them I have a migraine they look at me as if I am lying because of the misconception that if you have a migraine you have to be in bed and throwing up. So they think I am just exaggerating a headache. Then they tell me about Excedrin migraine or not eating chocolate. I’m so tired of the belittling responses that now I just answer that I’m okay–even when I feel like I’m dying!

  • Mr FBP
    3 years ago

    Thanks Tammy, that is an inspiring story. Two of my children may have migraine, but there are so many other health issues in my house it’s hard to know and to get a clear diagnosis. My oldest daughter I thought had abdominal migraine, but it turned out to be coeliac disease, my youngest daughter had similar symptoms but the tests were negative. Eliminating wheat and gluten did help but she still gets up most nights feeling sick and/or with a headache. She’s going to have a trial elimination diet (once her 10th birthday party is over).

    My middle daughter has all sorts of odd sick feelings, but she also has ADHD and Aspergers, and knowing what is a stress reaction to life and what is a sign of a new illness can be tough.

    My oldest child – my only son, is like your daughter, an inspiration to me. He has had asthma and nut allergy recognised since infanthood and was diagnosed coeliac aged 12. Now 18, He takes on full responsibility for label checking and will go out to restaurants with his girlfriend and manage the allergens discussion with waiters and/or the chefs. The truth is he was managing his asthma pretty well when he was 6, and just adapted well to all the health issues since. I often tell my friends I don’t where it all went right with him.

    We need to be easy on ourselves as parents as we don’t always get it right, but I’m sure the fact that we live struggling with our own health issues, though a big negative, has given our children a lesson in human resilience along the way!

  • Tammy Rome author
    3 years ago

    Thank you for sharing your parenting experiences. I have no doubt that your younger kids will turn out just as great as your oldest.

    My baby has ADHD, Asperger’s, OCD, and Migraine. So many comorbid conditions do make it tough. He’s now 19 and thriving as a young adult. Like your oldest, he has learned how to take responsibility for and manage his own health issues.

    I agree with you. I have no idea how it all went so right when I felt like such a failure. 🙂

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