How do migraines impact a child's social life?

[chronichead]

What are your experiences with the impact of migraines or chronic headaches on a child's social life and relationships?

What can one do to help a child to go through these difficulties?

[johnsmith]

you say: "What can one do to help a child to go through these difficulties?" A long time ago I was involved in youth work and tutoring of children.

The child needs to develop their own strategies to deal with the issue. Some strategies will be effective. Some strategies will not work very well. And other strategies will have negative consequences.

All experiences the child has are in the long term helpful. This runs counter to modern doctrines. Modern doctrines are based on selected individuals who have been damaged because they lack a sound skill base.

One makes decisions based on what works and does not work. The reduced social contact the child has because of their condition prepares a child to do other things instead. Beware of psychologists and psychiatrists they could make a bad situation worse. A record of having seen one can get entered on a medical record and recorded as an example of the child lacking mental health credibility.

The bad experiences are based on what happened 5 minutes before the event. So the child can be guided to looking at what they did before the bad event. An adult has many experiences they can draw upon. A child does not have that many. To think and plan and make predictions well relies on life experience. When a person is prevented from having life experience (good or bad) they cannot use that experience to make better decisions.

[chronichead in reply to johnsmith]

Thank you johnsmith for this response. I think you made some very interesting points here and I guess I phrased the question wrongly.

I too believe that a child has to make its own experiences and has to find the right strategies that work for a specific situation. And I guess with a very open approach and by giving a child options to try out in their own manner, one can already help with that.

[johnsmith in reply to chronichead]

Thanks for the reply.

[Barnclown in reply to johnsmith]

👍 to you BOTH:

Am 66 and have managed secondary migraine all my life. I coped the way john has described: this worked for me! No one helped me figure coping-tactics out...i just did what i had to try to do...it wasn’t easy at all, but, via trial & error, it just came naturally. I guess i was lucky

actually am not all that lucky, cause am diagnosed with 4 rare, incurable infancy-onset progressive multi-system immune dysfunction & connective tissue disorder illnesses...all of which have gradually been diagnosed & put into treatment over the decades as science progressed enough to figure the causes underlying my chronic illness & critical health incidents.

However, migraine has been among the top 10 horrors of my life, and still is...but i have tried & true migraine coping-strategies..and devising these has helped me A LOT with figuring out how to survive ALL my other health challenges...so far, anyway

Thank you both: your discussion means a great deal to me

🍀❤️🍀❤️ Coco

[chronichead in reply to Barnclown]

Hello Coco, you are really great in being so positive, I think this is something many can admire about your story.

I too had migraines since I was a child. What were the coping-strategies that worked best for you?

All the best

C

[Barnclown in reply to chronichead]

😊 I do try to concentrate on positives, but OMG is life with chronic illnesses + pain ULTRA tough: there is no denying! I guess i just love celebrating every time we achieve some sort of success via self help, lifestyle techniques, body therapies, investigations, procedures, meds, whatever...but i TOTALLY WISH none of us had to live this way

Gosh...full-on migraine hit me at 7 in 1960 after a fall onto head from height injury. Until 25, i managed by figuring out my triggers + relying on self help techniques because no OTC meds helped and my mother was very anti-doctors. Eg no funfair rides or wild dancing, fast running etc etc..the minute i felt a hint of migraine, i quickly had to lie down flat alone (no talking or listening or looking at anything) in a dark quiet room with my head in a position that minimised migraine pain only sipping water & nibbling dry crackers etc etc. but really i had no appetite at those times. So, i had to stick to this sort of thing as long as needed until migraine either gave up or flared fully before it finally stopped.

The pain was horrific and could last for up to 4 days...i learned to go hide up the minute i felt the very first symptoms. Certainly made enjoying childhood social & family life hard

As a young adult i got into meditation, yoga & body work therapies, including The Alexander Technique. Maybe these helped minimise migraines coming on? But even consientious trials of various types of acupuncture & massage & homeopathy were all ineffective

At 25 a GP prescribed the powerful NSAID mefemanic acid 500mg 3x daily for endometriosis pain. Eventually i AMAZINGLY discovered totally by coincidence that 500mg mefenamic could also stop migraine fully manifesting if taken at first signs. It wasn’t long before i realised these pos responses to mefenamic implied my version of endometriosis pain & my migraines seemed to have something in common biologically. NSAIDs of course damp down inflammation. So i guessed inflammatory process could be the commonality.

But the NHS took another 40 years to more or less admit this is true in my case. This acknowledgement came about last year when we observed that my migraines come on when my version of inflammatory bowel disease is flaring. For several years now, i’ve been in Intestinal Failure + my mouth to exit chronic slow transit dysmotility is highly obstructive and highly symptomatic. This severe GI tract instability. has my migraine tending to flare relatively often.

Which is not great cause systemic lupus patients do best to avoid NSAIDs, and mefenamic is especially contraindicated in the literature. So i use all my self-help tricks in the attempt to ensure i forestall migraines at first signs...but OMG does early dosing with mefenamic give me the only truly reliable relief. Eg if i realised our house had caught fire, the first things i’d grab are a box of mefenamic & my ipad...I find i need less doses of mefenamic if i take it immediately i notice the slightest hint of migraine

sorry if that’s TMI, but maybe something in there can be useful to you &/or others 🍀❤️

[Barnclown in reply to Barnclown]

OOOPS ...i should add:

In june i was on neurosurgery ward literally an hour or so from being wheeled into OR for lumbar instrumented fusion. I felt a migraine coming on. I told a head nurse and asked if mefenamic was ok at that moment. He said no, but i’ll find out what we can give you. I waited about 30 min with the migraine quickly becoming severe before he reappeared saying: the Dr had says try IV paracetamol. I sceptically told him oral paracetamol has never stopped my migraines, but he said: the same dose of IV paracetamol packs more punch...and OMG he was right: by the time i was getting anaesthetic that migraine had disappeared!

[chronichead in reply to Barnclown]

Thank you Barnclown again for sharing your insights. It is a tough journey we all have to go through so I am happy to hear that you found at least something that helps you relief your pain or even kill the migraines off.

Finding the right managing techniques for yourself is probably the most important thing we can do. We are all different so for everybody something else might work. But sharing experiences already helps a lot.

I wish you all the best in the future!! And keep your positive spirit

[Barnclown in reply to chronichead]

🙂 thanks...yes: well said! & yes, it is a tough journey for us all. And mine has been kaleidoscopic due to an unusual infant onset primaries diagnostic mix (Hypermobile Ehlers Danlos Syndrome + Diethylstilbestrol Syndrome+ Systemic Lupus Erythematosus + Primary Immunodeficiency Disease)...+ the collection of secondary Immune Dysfunction + Connective Tissue Disorder comorbidities i’ve built up in 66 years boggles the mind.

But my medics & i have put together a narrative that makes enough sense of it all to be truly comforting/helpful..and the internet + all my wonderful support groups & their forums also help a lot - your discussion is a great example!

I’m glad you’re all here! 🍀❤️🍀❤️

[johnsmith in reply to Barnclown]

Good story. Just shows. Same symptoms. Same diagnosis. Different causes. Requires self investigation to determine what is best course of action.

You say: "This acknowledgement came about last year when we observed that my migraines come on when my version of inflammatory bowel disease is flaring. "

There has been some interesting development on the gut bionome and the vagus nerve.

nature.com/articles/nm.4517

ncbi.nlm.nih.gov/pmc/articl...

There is a book I have just come across which has some interesting ideas. Cannot verify the truth of them. The vagus nerve is a cranial nerve that exits from the top of the spinal column. The theory is that it can be compressed by muscle forces. These forces can be reduced by certain actions.

This is not something I thought much about. I have had no knowledge of therapists in this area.

Accessing the Healing Power of the Vagus Nerve: Self-Help Exercises for Anxiety, Depression, Trauma, and Autism by Stanley Rosenberg.

en.wikipedia.org/wiki/Polyv...

[Barnclown in reply to johnsmith]

😯 you’ve hit the spot, john! This is exactly what my medics & i think is part of the venn diagram of issues involved in my migraines & GI tract issues. I listed my infant onset primary comorbidities etc above in replying to chronichead just now...am figuring you know how these can manifest...and my dysautonomia plays in with your Great reply, of course. Thanks V Much for these links: great reading! 🤩

[astragal]

Good morning chronichead

I am 57 now but began having classic migraine with full aura at around 5 years old. The flashing ‘teeth’ as I called them would begin, then I would be sick, light and sound effected me, I had to lie down in a dark room. There was also a distinct smell used to precede the pain.

For some reason I rarely had them during school time, but could last all weekend, leaving me with a vague feeling at the beginning of the week.

My parents weren’t very tolerant or proactive, tending to be impatient and irritated .

I feel there should be more awareness and in cases of children with frequent migraine which impinges on their activities and lifestyle it should receive the same understanding and support as conditions such as diabetes etc.

Teachers, parents and doctors have the opportunity to work together to develop strategies that help the child get the best possible quality of life they can.

Ideally further research in to cause and possible intervention in the pattern of migraine is needed.

In my case none of the medication worked. It was actually traditional Chinese medicine and acupuncture which helped in the end.

[chronichead in reply to astragal]

Hi astragal , thank you for sharing your story. I am 100% on your side, that the awareness around the condition has to be increased. I have headaches/migraines since I was six and was fortunate that my parents tried everything to help me but I now am doing a lot of research where I see how little is actually done, especially in terms of the psychological and social aspect!

For me too, medication hardly ever worked so I tried many many strategies. In my research for a project where we want to translate "boring" coping strategies into games and stories for kids and their families, I found many things that are already proven to help such as meditation, hypnotherapy, art therapy etc. etc.

So, yes, we have to raise awareness on how much it can impact you as a child. Not only feeling pain but also the fear, anxiety and sometimes social exclusion..

[astragal in reply to chronichead]

Hello chronichead

I think the idea of creating more coping strategies aimed specifically at children is wonderful. I don’t know about nowadays, but when I was young other children had no awareness of the condition, a child can become isolated and excluded because they may not be able to join in. Indeed many teachers and adults in general had little awareness.

I used to wait, anticipating the flashing lights. It is frightening even now, my vision breaks up and may not recover for an hour or so, I always fear it might never go back to normal.

It was boring and tedious lying alone in a dark room waiting for it to pass, the pain to ease enough to move.

A way to make that better and more tolerable for children would be a great advancement.

Even more general awareness, maybe in book form, aimed at a variety of age groups. Perhaps featuring a child or indeed animal who experiences migraines and the symptoms which might be experienced, what might help and how their friends can make it easier for them.

I wish you all the best with your endeavours.

[chronichead in reply to astragal]

Hello astragal

I experienced a similar situation as a child, nobody really knew about it. As far as I found out from my research the topic got a bit more recognition but it's moving in mini steps.

So yes, awareness has to be one step and then actionable strategies for children.

What would you say are the most important topics to help people understand about it? We are currently trying to set up a blog to provide parents with more information and want to include videos and all kinds of formats, definitely also learning from children's experience.

Would be great to get your feedback on that.