Coping strategies for parent of child suffering from severe migraines?

Hello:

My 11-year old daughter has been suffering from migraine headaches for at least a year now, and they are getting worse. She has probably missed a full month of school this year due to the condition, and during attacks she is bed ridden for 2 or 3 days at a time. It is gotten to the point that we are very excited when one week goes by without her missing at least a day of school. My daughter is very active in Figure Skating and Acting, and is now missing many of these activities too. We have been seeing a neurologist and she is now on her third medication, with no improvement.

Those of you who are caregivers, what coping strategies do you use to deal with this at an emotional level, and to best help your child? I am sad and frustrated, and my daughter picks up on this and if anything it only contributes to her illness. I feel terrible for her. She is in significant pain much of the time and is missing out on so many things she enjoys. I feel like her illness is in part my fault because I had migraines as a teenager, and passed those genes on to her. Recently, I had a nightmare that she was sick every day and never could go to school again. Even when she is well, I know that she will get sick again in a few days, so I no longer like to make plans and am careful not to get too excited about an upcoming event that we might have to miss.

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Comments

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  • keling
    4 years ago

    My soon-to-be 13yro son has had migraines since he was 5, and he changed to chronic migraine status about 4-5 years ago. He misses, on average, 2-3 days a week from school. When he is ‘good’ he is very active in soccer and rugby.

    It has been very hard, especially as we can’t find anything that seems to prevent them, and very little stops one. He has even had to make multiple emergency room visits. Sometimes, that’s a back rub with lavender oil (he hates the smell, but he admits it helps him to relax), cuddling, letting him stay in the dark, keeping things quiet, etc.

    It has been particularly hard not to stress out about him missing so much school, but I try very hard to be forthcoming with all his teachers, and stay in close touch with them to make sure he’s keeping up with his school work.

  • Jules2dl
    4 years ago

    Hi TWS;
    Wow, your daughter could have been me, 45 years ago. My migraines started when I was 11 (puberty, or about 3 years before menarche is a common time), and I was active in both figure skating and acting as well.
    You are both lucky in that there is much less stigma about migraines, and especially migraines in children, than there was when I was 11. My pediatrician yelled at me in front of a full waiting room that I was neurotic, and little girls don’t get headaches. That made me feel humiliated as well as guilty for years.
    My best advice is to be patient, be there with ice packs and ice cream (the cold ice cream on the upper palate temporarily dulls the pain, plus its calming.) Turn her favorite music on softly and check on her often. But mostly I think I’d meet with her teachers, guidance counselor, and the school nurse to discuss her needs. Perhaps you can send a special ice pack for the nurse to keep in her office for those times your daughter may be overcome at school. With a doctor’s note, it might be possible to keep rescue meds at school as well. Tell the nurse what she needs to know so that she can work quickly when your daughter goes to see her, instead of her asking a gazillion questions before she’s allowed to lie down with that ice pack.
    Maybe her teachers can give you their syllabus, so that you have your daughter’s assignments in advance, which saves the worry of having to get them day-to-day when your daughter is absent. That way too, it may be possible for her to work a bit ahead on the days when she feels well enough. Above all, be sure her teachers are understanding if your daughter needs extra help after an absence. I remember a teacher who,of her own volition, allowed me to retake a test which I had almost failed the day before because she had noticed that I had a migraine while taking the test. I took it again on a headache-free day and got an A. This same observant and compassionate woman also once took a gentle hold of me in the hallway because she could see that I was white as a ghost and weaving my way to class. She guided me to the nurse’s office and sat with me until I was settled down with an ice pack. The attitude of her teachers towards her illness can have a crucial effect on how well your daughter copes with her many absences. Understanding teachers can take a whole lot of the stress off of her shoulders. They can also intercede if they notice anyone teasing or taunting your daughter about her headaches.
    In the same way, you can also speak to the mothers of her friends, so that they know the proper protocol if a migraine comes to call. You might even find a friend who is willing to go the extra mile and sit down with your daughter and go over the day’s schoolwork with her.
    My mom used to run through lines with me when I was in a play. My Dad helped me with math. They were patient and supportive when I was down for the count, and ran interference for me with school, the doctors, and my friends.
    Best of luck to both of you…and neither one of you should feel guilty about the migraines!!

  • Susie
    4 years ago

    I have had chronic migraines since preschool. I am 56 now. I got them from both sides of my family and my daughter started getting them in her 20’s. I know it’s hard, but please don’t feel guilty. If they are genetic, someone passed them to you and you say that you know your feelings are not helping your daughters symptoms. I wish I could take my daughters pain but I can’t. I can show her how I deal with them and that I understand what she is going through. She went through a patch in high school where she was out a lot. I was frustrated and scared, but the best thing I could do for her was to shield her from teachers and attendance secretaries who didn’t believe her. Ask her what she needs from you. And remember she will get through this just like you do.

  • Georgina Crowe
    4 years ago

    I have been suffering with migraines since I was thirteen years old, I’m now fifteen turning 16 in august. I danced a whole lot before I was sick and I can completely understand what it’s like losing a whole deal of your ‘old life’. I talked to my mum about this and her biggest thing is communication, especially with her school and for me- my dance school. I took my exams and did all my tests and due dates at different times so that there was no pressure. The school also understood why I wasn’t there a whole lot which was great as it was easy to reschedule things. In terms of figure skating, it’s understanding that it will be different and you’ll make sacrifices, start slow, I did one day a week of ballet for only an hour and slowly worked my way back up.

    Another thing that really helped me was taking up something migraine friendly, I started a blog, which I now work on in my free time and doesn’t take a whole lot of hassle. Going for jogs when you can, or doing craft. I know this probably sounds stupid but for me it gave me a sense of accomplishment as I wasn’t able to do anything when I was sick or in recovery.

    My migraines when they were at their worst put me in hospital on IV and would make me unconsious from the dehydration. I was on every medication you could think of, all of which didn’t work. I am now part of the Watson Headache treatment, which I really suggest looking up. It hasn’t been a cure (nothing really is with migraines) but it has eased some of the pain just a little bit for me and it involves no full medication, instead just using techniques to re align the brain stem.

    I know how painful migraines are and when they are so painful have you ever got her to receive pain medication. I get rushed into the doctors and they inject me with a fluid that numbs me, it doesn’t get rid of it, but it allows me to sleep and not have such a headache. They use these injections for people who have have awful pain.

    Hope everything goes on the improve, people with migraines are true fighters,
    Gina

  • kaye
    4 years ago

    I’m sorry your daughter is having to live with migraines. We had the same situation your in now and it was very stressful when she went to high school. My daughters neurologist told her she would get where she need to be she was just going to follow a different path. I found myself thing about this a lot when we had to miss things are do them differently. I think it help us to get through the tough times and know everything would be okay. We both still have migraines but we manage.

  • Jenn Lebowitz
    4 years ago

    Hi TWS,

    Thank you so much for sharing your story with us. I am so sorry your daughter is in so much pain. She is, however, very fortunate to have such a kind, strong, and caring parent.

    While you may get feedback from the community on coping strategies for caregivers, I thought you might appreciate a few articles that might help.

    This first one is a piece that has provided help and comfort to others, which might be useful for your daughter – and some of the concepts might be helpful for you as well: http://migraine.com/blog/10-secrets-of-successful-chronic/.

    The final paragraph of and comments on this next one include coping strategies for migraineurs that can also relate to caregivers: http://migraine.com/blog/coping-skills-save-the-judgement-what-matters-is-finding-what-works-for-you/comments/#comments, such as seeing a therapist or counselor.

    If you do decide to try counseling, this article can be useful in understanding the different types of therapy that are available: http://migraine.com/blog/mental-health-therapies-that-work/.

    I hope these prove useful for you. I want to commend you for reaching out. Please know that you are not alone, and we welcome you to come here with your thoughts or questions any time, and especially when you’d like some support. We are thinking of you and your daughter!

    Best Regards,

    Jenn (Community Manager, Migraine.com)

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