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First-time poster, caregiver and mom needs advice

  • By haphioanh

    My daughter is 10 years old and has had an ongoing persistent headache for 2 months now. She has a continuous headache 24/7 and sharp stabbing pain in the center of her forehead that last from a few seconds to a minute or 2 about 50 times a day. She calls it her Harry Potter scar. The pain causes her to hyperventilate and cry out. She has missed over 20 days of school. She is in her third week of Topamax at 100 mg and her first week of indomethacin. She has had prednisone and IV treatments of reglan, toradol and ketorolac at the ER at the Children’s Hospital. Her MRI is normal and she tested negative for Lyme disease.

    The funny thing is that 3 other students in her fifth grade has had migraines in the last few weeks and another girl has had a grand mal seizure with a diagnosis of benign childhood epilepsy. One girl’s migraines are also chronic. She is on a steroid and if it does not resolve the migraine she will be admitted for inpatient treatment. She too has had IV treatment with reglan and toradol. I am not sure about the characteristic of the migraines in the other two students.

    My question is: Is it possible that there is something in the classroom that is causing such severe migraines? My daughter has barely been to school so she has not been exposed to the classroom for a while now. Or is it possible it is something viral? I asked the neurologist and he did not think it was viral since she does not have any other symptoms such as fever, muscle aches, rashes etc… I am just curious if the collective knowledge of this forum has any ideas what may be causing what seemingly is an epidemic of migraines and neurological issues in children. I understand that fifth graders are hormonal but this is ridiculous.

    I also wanted to give a shout out to this website for helping navigate the school system and getting accommodations put in place under Section 504 and homebound tutoring from the school district until we get these migraines under control.

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  • By GardensatNight

    The lights in the classroom? That’s my first thought because as a person with severe migraine, that’s why I ultimately had to leave my classroom.

    I was a teacher for many years and those nasty flickering fluorescent lights in most public school buildings are horrible for the percentage of the population susceptible to seizure or headache disorder. Does she do better when at home for extended periods of time and not exposed to the school?

    One school I worked in also had a bad mold problem. The school tested it themselves, and found “nothing.” (Big surprise. They didn’t want to pay to fix it.) Coworkers were sure there was a problem, so they snuck someone independent in to test, and sure enough, there was mold. School still refused to do anything (to this day.)

    Does she drink water from the water fountains? I would assume then she would drink the same water at home, but maybe the school has old pipes/something getting into the water?

    Just throwing out ideas, hard to know without being able to walk into your daughter’s space.

    IMHO, if multiple kids in your daughter’s class are developing weird unexplained migraine all of a sudden, I might keep her out for a few weeks (can you ask your doc to write a note for this so she can do her work from home?) and see if symptoms improve. At least you would have some sort of data.

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  • By Nancy Harris Bonk Moderator

    Hi haphioanh,

    Welcome to the Migraine.com discussion forum – we’re glad you found us! And thank you for your kind words!

    I am sorry to hear about your daughter. I know how awful it is to see our children in pain. Let’s see what information I can give you that may help. GardensatNight gave you great information on school conditions. If light sensitivity is one of the issues, you may want to investigate glasses that are specifically made for people with this issues as many of us are. TheraSpecs make wonderful glasses (I have an pair for outdoor wear) that help block out some of the light issues that can trigger a migraine attack. Take a look at this information about them; https://migraine.com/sponsored/sponsored-proven-migraine-relief-with-new-theraspecs-glasses/.

    Topamax works wonders for some people, not so much for others. Most people do much better on a slow taper of Topamax, and for children the dose is smaller. Take a look at these articles for more information on this;
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5507226/
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3611901/.

    Have you been able to keep a detailed migraine diary to help determine if your daughter’s migraine attacks have any patterns and/or what her triggers are? If not I would encourage you to. When my son was 9 years old, he began having frequent migraine attacks. After we kept a migraine diary for a few months, we determined his attacks were triggered by dehydration, skipping meals, too many nitrates (lunch meat etc.) and an irregular sleep pattern. Once we got those under control, his migraine attacks became less frequent. Here is information on how to keep one; https://migraine.com/blog/keeping-migraine-diary-basics/.

    I hope this helps!
    Nancy

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  • By haphioanh

    Hi Nancy and Gardensatnight,

    Thank you for the responses. You gave me a lot to think about. The fluorescent lights are definitely suspect. The school principal has asked the district to look into the school building as being a possible trigger whether it is mold or something else. Winter break is coming up and she will start homebound tutoring in the New Year. The school district will provide tutors to come to our home for an hour to help her keep up with school from home.

    I like the idea of keeping a diary. We kind of have a sense of good days and bad days. We are anecdotally aware that dawn and dusk are bad times of day. I would like to have concrete data to refer to though. But how do you keep a detailed diary when the pain 24/7?

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  • By GardensatNight

    When I first got sick, it was like a switch flipped. I went from episodic migraine, to having a migraine basically 24/7 that we couldn’t get under control for months. So I understand what you’re saying about how the heck do we diary that?

    What I did was be REALLY observant about what made me feel worse, and did ANYTHING make me feel better? I figured out when I looked away from a computer screen, that doing so decreased my pain. I looked back and forth ten times, heart sinking, realizing that screens were a trigger. I also realized one day when I was home sick making pancakes in the dark (just hadn’t turned the lights on) that my headache had subsided for a few hours. It was through things like that, that I realized how terribly light-sensitive I had become without ever realizing it.

    Hubs went out to get us McDonald’s one day, and my migraine MASSIVELY increased. (We were WAY naive at that point–no neurologist has ever proven nearly as helpful as this site to things that trigger migraine.) So I google, “Can McDonalds trigger migraine?” and sure enough, I got all these sites on MSG and migraine elimination diets. Kerrie Smyres has a great one, by the way…

    https://migraine.com/blog/elimination-diet-foods-to-eat-foods-to-avoid/

    …we figured out that I was eating foods that triggered migraine at basically every meal. So as an experiment, we tried cutting everything, figuring if it didn’t work after a few weeks, we’d go back. Migraines got somewhat better, even if didn’t go away. That told us food was one of the triggers.

    Common migraine triggers to pay attention for include: stress, dehydration, poor sleep (need to go to bed at the same time every day, get up at the same time and try for at least 8 hours), weather changes (some people get a migraine at every cold front), sounds, smells, light, glare, screens.

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