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The story of a migraine mom

My son, T, is celebrating a milestone in a few weeks – he’s going to be 13 and I just can’t believe that much time has passed, and that he and I are pretty much the same height. Oh, and did I mention that his feet, which were the sames sizes as mine just 6 months ago, are now 2 sizes bigger?

I’m really proud of him, too! He’s an avid footballer (that’s soccer) and rugby player, he’s an honour roll student, is active in our church’s youth group, is an active volunteer, and is turning into a very fine young gentleman (and that’s coming from his teachers and the little old ladies at church!). But, T faces a major challenge – he suffers from chronic migraine.

His first migraines were diagnosed when he was 5 – both head and abdominal migraine. Fortunately, our pediatrician was able diagnose it early on, and in those days, they were, essentially, occasional. He had them a few times a month, at most, and he didn’t require any ‘special’ medications.

Then, by the time he was 9, they started to become more frequent. As a 4th grader, we had to develop a plan for helping him cope with them when they started at school, at least until I could get there to pick him up. His kit included a sleeping mask with cold pouches that could be inserted, medicine, and a request that he be put into the darkest room of the building. We also had to ask for teachers to start turning off those blasted fluorescent ceiling lights whenever possible.

Over the last two years, they’ve gotten even worse and more frequent. Symptoms can vary, but he has experienced aura, double vision, dizziness, nausea, muscle tension in his back, ‘jelly’ legs and arms, tingling throughout his body, light and noise sensitivity, and sleep problems. Sadly, we’ve not found a single medication that helps prevent them, he practically lives in his migraine glasses, and his triggers – low pressure systems, sleep problems, and certain kinds of lighting – are all pretty much out of our control.

We’ve also discovered he has some sort of sleep disorder, making it very difficult for him to fall asleep at night, no matter how tired or active he’s been. And because he’s so young, doctors are hesitant to treat it with medication. Instead, he tries to exercise in some fashion most nights, and he’s even started using lavender – he hates the smell, but he admits it helps him relax.

He is now classified as having chronic migraine, with 15 or more migraine days a month. In fact, on average, he misses at least 2 days of school every week.

It has been so hard. As a mom, I wish there was a way to go into his brain and remove whatever it is that is causing him so much suffering. I am in constant contact with all his middle school teachers (he’s now a 7th grader), and he is pretty much half-homeschooled now. Fortunately, his teachers have been very flexible, and some have even let me administer missed tests at home.

Of course, I feel guilty, too. I wish I could take it away. I get migraines as well, but maybe 1-2 a year at most. My boss gets upset when I have to suddenly leave work to go pick him up, even though I make up all my missed hours and do work from home. And my hubby has a hard time with it, as well, wanting to make sure he’s not trying to milk the situation.

So here we are, on medication number who-knows-what, being referred back to a specialist (there aren’t any in our country), and just desperately trying to get by. We’d love to hear your tips and suggestions – I’m so tired of people who know nothing about migraines trying to tell us about the nonsense they’ve read on the internet, or what supposedly worked for a friend-of-a-friend. Thanks in advance!

Oh, and did I mention how proud I am of my boy?

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Comments

  • KaciMo
    4 years ago

    keling,

    My heart breaks for what you must be going through. I was a few years older than T is now when I first started experiencing migraines, and I don’t have any advice on how to “fix it”, But I do want to encourage you. As a teenager with chronic migraine, I know my mom was my biggest supporter and my biggest advocate. When no one else–even doctors–would take me seriously, I knew my mom did, and that meant the world. She also did exactly what you’re doing, scoured the Internet, read books, learned as much as she could until I was old enough to take over my own care. Even though it hurts to watch your baby hurt, and even though you never feel like you’re doing enough, know that you’re doing the right thing and that he’s noticing.

    One of my favorite quotes by C. S. Lewis says, “Hardship often prepares an ordinary person for an extraordinary destiny.” God’s got something big in store for little T. Have faith, sister.

    –Kaci

  • Jenn Lebowitz
    4 years ago

    Hi keling,

    Thank you so much for sharing your story. We are so sorry to hear your son is dealing with the challenges of migraine.

    While you may get more feedback from the community, I thought a few articles might be useful. I know you mentioned that there aren’t many or any specialists in your country – I thought this post, which details a wide range of people who work with migraine, might potentially be useful, to hopefully provide more options and potentially help you find someone near you who can help: http://migraine.com/blog/healthcare-providers-turn-to-for-help/.

    Additionally, here are two articles from a 40-year veteran of migraine, Tammy – here she shares her most successful migraine management tools: http://migraine.com/blog/10-secrets-of-successful-chronic/ and here she shares survival tips: http://migraine.com/blog/survival-tips-40-year-veteran/.

    Also, many people find a migraine toolkit helpful. Here are two articles on creating one: http://migraine.com/infographic/tips-for-building-your-migraine-emergency-toolkit/ and http://migraine.com/blog/what-should-i-put-in-my-migraine-tool-bag/.

    Additionally, you are welcome to use our forum whether for your son or for yourself, any time – the forums can be accessed here: http://migraine.com/forums/.

    Again, we want to thank you for posting and for being part of the community. Your son is lucky to have such a caring and proactive mom. Please know you and your family are not alone. We welcome you to post here any time, as we are here to listen and support. Wishing you our very best – and wishing your son a happy 13th birthday!

    Warmly,

    Jenn (Community Manager, Migraine.com)

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