Tuesday, November 11, 2008

I Need Your Help!

Have any of you ever heard of "childhood migraine syndrome?" Have you ever dealt with frequent migraines in kids or adolescents?

I ask out of pure desperation. Caroline, age 12, is suddenly suffering from frequent and intense migraines. We're working with our doctor and a neurologist, both of whom tell us that "childhood migraine syndrome" is relatively common, especially in adolescent girls. We're trying various options in terms of medications, preventative things, but boy, is this rough. The headaches are quite disabling, and poor Caroline has missed more school and suffered from more nausea and headache pain in the last 2 weeks than most kids suffer in 5 years, I'm guessing.

So I'm appealing for help, any advice, reassurance, etc. It is NO FUN for anyone, and of course I'd give anything to stop this for Caroline.

By the way, we're told that adult migraines are pretty different from this sort of child/teen migraine syndrome. So I'm particularly interested in hearing if any of you has experience in dealing with this.

Thanks! (When Caroline gets a migraine, I get an immediate tension headache... so I'm going to go take some ibuprofin...)


  1. i'm so sorry your daughter is suffering these horrible headaches. my daughter also had child migraine syndrome, beginning at age 10. we found that diligence in keeping her blood sugar even helped considerably in keeping them at bay. when she had headache and nausea, my first question was always when and what did you last eat. a slice of toast and small glass of milk and then a little rest generally helped her feel better faster. once her periods began (at age 14) the migraines ebbed and finally stopped altogether.

  2. Anonymous5:53 PM

    I had migraines from ages 12 until about 19. I would be very light sensitive, and wouldn't be able to focus on anything for very long. (My worst episode was during exam week [!] Junior year of HS. I would barely be able to make it through the morning exams, get home, and just sleep until the next morning's exams.)

    What helped:
    --Chiropractic adjustments (would relieve the muscle tension from tightening my shoulder and neck muscles)
    --long, hot baths in a darkened bathroom
    --mashed potatoes (comfort food)
    --lots of sleep and silence
    --NO CAFFEINE (coffee [well, I didn't, at that age, anyway, but these days some kids do], tea, soda, all off limits)
    --more sleep and silence

    No medicine helped. This was in the 1980s, before all the magic of pharmeceuticals for migraines.

    Good luck to Caroline, and hugs, too. Tell her to hang in there; it's true, these do pass, and once she can start noticing the triggers, or the twinges that herald the start of a migraine, she'll be able to shorten the length of the actual migraine.

  3. And be sure and check out allergies- cheese and chocolate are horrific when it comes to migraines for kids - and also the above mentioned caffeine in ANY form. Hope this passes soon.

  4. Yikes. I know nothing of childhood migraines, but it sounds awful. I know that I get a really bad headache or two either right before or right after menstruation -- could this be tied to puberty? My SIL used to get terrible migraines (she was in her late 30s though) and ultimately changed her eating habits. Caffeine is off limits for her and I think chocolate is too. She was down to only eating boiled chicken and rice and then slowly added foods back in to see what set off the migraines and what didn't. She did this with the help of a non-western medicine doc and has been migraine-free for a few years now.

    Good luck to you and Carolyn!

  5. Oh my, I haven't heard of these. Good luck to you. I have had migraines myself. Some of my headaches are tied to not getting enough oxygen to the brain. So I try not to sleep completely under the blanket, or stuff my face too much into the pillow when I sleep and breathe deep when I feel a headache coming on. It helps a little.

  6. Anonymous7:42 PM

    My 10 year old niece has bad headaches and nausea, I' not sure if they've been officially called migraines yet. We know lack of sleep causes hers, and getting off her normal eating routine may be a more minor trigger. A small bit of caffeine and a nap may make it go away, or it may make things worse - the only way to find out is to try it.

    My son had a few around age 12, but fortunately seems to have outgrown then.

    As an adult who suffers from migraines, I also have lack of sleep and stress as known triggers. The medications they have now are wonderful, but I don't know if they wok for a child.

  7. Anonymous7:47 PM

    My niece has/had pre-adolescent migraine. The onset was just before puberty and her doctor believes it's hormone related. She takes low dosage Elavil, an antidepressant that has been around for probably 50 years. It's very effective for non-depression issues, and is often prescribed for children. (I took it years ago for fibromyalgia for its sedative quality--it promotes deep sleep.) My niece is doing well now. It will take some trial & error, but you will find the answer. Caroline will probably eventually outgrow it, but you need help for the meantime. Good luck.

  8. I don't know exactly about 'childhood migraine syndrome' but you and Caroline have my heartfelt sympathies. Migraines are horrible.

    Check out 'The Migraine Brain' by Carolyn Bernstein MD. For more information on the book and Dr. Berstein, there's a Fresh Air segment you can listen to on NPR plus an article by the Dr. where she writes about suffering from migraines herself since she was a little girl

    I hope this helps!

  9. Stephanie had them and eventually outgrew them. I don't recall that she had them that often and I remember them being brought on by some stressful situation. I am so impressed with the comments you have received so far. It is amazing.

  10. Anonymous11:02 PM

    I have a good friend whose daughter has suffered for a few years (I'm guessing ages 10 to 13) with migraines. She was on a low dose of calcium channel blocker as a preventative and that seemed to help altho it made her blood pressure really low. Sun was a trigger, and changes in weather seemed to bring them on. She is doing much better now, and is no longer taking medication. I think the hormones probably play a big role.

    There's nothing worse than your child in pain. Hang in there.

  11. My daughter started getting headaches in her late teens. I always thought they were hormone-related, but doctors never mentioned that. She had good luck with Topamax. Don't know if it would be suitable for someone of your daughter's age, but you could ask. I did read that the generic will be available Jan. 1. I do feel your mom pain! Good luck.

  12. My doctor told me to take 400 mg of B2 (riboflavin) every day and up to 1200 mg when I have a headache. It helps some as does feverfew, but I would check with your doctor before giving them to Caroline. My heart goes out to you both and I hope it resolves itself soon.(I didn't have headaches until menopause - go figure.)

  13. Wow- do I feel sorry for you both. I've had opthomalitic migraines ever since I can remember. They don't seem nearly as dibilitating as they do for your daughter, though I have all the classic symptoms plus the auras. I can't begin to tell you what to do about them. Only to hang in there and keep searching for help.
    Best of luck to you both!!


  14. Anonymous8:02 AM

    One other trigger I forgot to mention in my earlier comment - dehydration. Even in winter, not drinking enough water can lead to migraines. I now carry water everywhere I go, and it has helped.

  15. Anonymous10:47 PM

    My son had them and interestingly the docs at that time said the adolescent migraines were more prevalent in boys. Anyway, he had some triggers, pizza for one. We narrowed that down to MSG, so as long as he stayed away from MSG, he was fine. They also put him on Periactin, which is an antihistamine. The docs then did not know why it worked, but it did. It is not listed on it's labeling as a use, but is used off label. I am a nurse and I am absolutely sure this is what was given, in case you have doubts I am remembering it correctly. Good luck to her and I hope it gets better.

  16. Anonymous8:44 AM

    I have suffered what was thought to be migranes for awhile and then was diagonsed as Blood pressure issues. So maybe a double check for BP. Once I started taking the right BP Rx they went completely away. Diet helps as well. Good luck