Childhood with migraines - My story

[chronichead]

A post on hope (Sorry for the long post) ☀️

I suffer from migraines since age 6 and have learned a lot from my parents on what they went through. So, I highly value this great support group. And I want to get active to make all children’s lives with migraines a bit brighter! So, I would be grateful to learn from your stories and understand where improvement is needed most! (Just comment or DM me)

By sharing my story and learnings, hope to contribute to this great support group and give you some hope.

My migraines started with abdominal issues at age 4. At age six they turned into migraines (without aura). My parents, as I have also seen with all you here, were extremely proactive, getting me appointments everywhere to find out what was wrong. As often, nobody found an organic cause. “There is nothing wrong. Try some pain killers it will help somehow.” - It did not in most of the time.

The lack of a clear direction from GPs or experts did not concern me as a child that much but definitely my parents. They felt helpless and frustrated that they could not help other than trying to soothe me. For me, as a child, I was more occupied with how it affected my daily life. The thought of planned school trips always had me worrying and overthinking about what might happen when my migraines come back. This fear was agonizing and I felt ashamed in front of my classmates. Even worse, I felt angry with myself that my head kept me from being a “normal” kid.

I have to admit that I was lucky. My migraines got better after puberty. Even if the intensity increased and duration became longer, the frequency reduced and I learned how to deal with my migraines in known and unknown situations. I still do not have “the one” solution for improvement but I tried a lot of different, non-pharmacological strategies. They helped me to at least deal with the emotional and social implications of my condition.

Still, looking back at my childhood and what my parents went through with me having troubles physically but also emotionally, I don’t want to rest on this improvement. I want to find a way to make other children’s and adolescents’ lives with migraines easier.

On my journey to find some guidance or strategy that can help children like yours, like me, I would be happy to get your feedback. Where is the most effort needed? What are the biggest struggles for you and your child? This way, I can find out where we together can act to improve the lives of young migraine sufferers.

DM me if you would be willing to help me help.

[Lipstick2020]

Hi/ Ive suffered from abdominal migraines all my life. Migraines are very difficult to treat and dont know if you ate in UK or USA but the treatment is different in the US. Please PM me and I can share more. I think an eval by pedi neuro is key because

GPs dont have the proper skills to evaluate pedi migraines and all their symptoms.

[Onthemove1971 in reply to Lipstick2020]

Our son has CVS.. which is migraines in his stomach. We are having great success with an antihistamine ( Cyproheptadine) he take 1 pill am and 1 1/2 night. His vomitting has stopped for at least 5 months.

I would also recommend magnesium (there are many times so try a few to see what works for you). I am.taking it 3x a day.

Hope this helps. It took us 6 years to diagnosis them.

Take care

[Hidden]

Hello! Both my daughters have migraines. The youngest started at 8yrs old. The oldest started 3 days after school started this year (8/2019). The youngest we never really figured out, but she only has them once in a while now, and it is definitely stress related. My oldest, however, has only had about 3 days without pain since August. We have learned a lot! Magnesium and B2 seem to be an area of insufficiency in migraine sufferers. So she is taking that. Triptans tend to make her worse. ciproheptadine and amitriptyline do not help for prevention, but improve sleep a touch. I'm on the verge of being done with modern medicine, but these other practices aren't doing much either. We are doing chiropractic, physical therapy, massage, neurofeedback, psychotherapy.... Nothing seems to make a difference. That's not true. Chiropractic adjustment gives her a few hours of reduced symptoms. Her debilitating symptom right now is lightheadedness, followed by stomachache, headache, and nausea. When all parts are strong (more than 3/10) she is super sensitive to light, sound, and smell. Poor kid can't find a place to hide that rids all three of those!

I think effort needs to be made to better understand how growing effects the nervous system and ultimately, migraines. Then we need to be able to develop medication or routines that are more predictable in relief. The new things out there are for adults, not growing, developing bodies. The side effects can be just as debilitating as the migraine! There must be something to do! Maybe there are patterns in a QEEG or TOVA that appear in migraine sufferers and not those without. There's got to be an easier way of teasing out triggers. I don't know.

Biggest struggles? Simply functioning and getting the education system off our backs! One cannot learn in this condition. Trying to learn makes it all unbearable - at least for my kid. I liken it to having a concussion. You need to rest your brain so it can heal after a concussion. if you use it too much, the pain increases. Same for my 13yro daughter.

I'd be interested in what you think about this situation. Maybe you know something to try that we haven't come across yet.

Good luck on your journey!