Desperate for help with teen daughter's migraines

[Gastropod]

Hi all,

Posting here for traffic, as I could do with some help. Teen daughter in final year at school, huge pressure with exams and schoolwork, etc.

She's suffered from migraines with aura for several years but until this year, a small dose of sumatriptan on migraine onset was enough to not only stop the migraine, but reduce overall frequency.

This year they are back with a vengeance. She has a sumatriptan nasal spray which works but still takes an hour to take effect.

This week she's had three migraines in a row, one every day. She's been late for school every day as a result. We have a doctor's note and the school are understanding but I'm very worried for her.

We are seeing a neurologist next month but I really don't know how to manage this. We have no idea what the triggers are, apart from stress.

She's a bright kid and has worked incredibly hard to get good results, and has dreams of uni etc. next year. I'm extremely concerned this blasted condition will scupper her chances. Of course, I'm not sharing my fears with her. I joined a couple of migraine support groups but it's all doom and gloom, I'm now feeling that this is a life sentence for her.

Is there any advice for me as concerned parent? What on earth can I do to help her?

Thank you

This might be of interest. There's also episodes on hormones and migraine

https://open.spotify.com/episode/6CjrNEfHaOFON190TWTqxN?si=IKOUzTjfQJiWwaJTP8mGMA

My dd has chronic migraine and school is a massive issue. She has far fewer migraines during the holidays. We have a printed copy for a migraine diary that we fill in together over dinner each day, having tried many other ways. As pp have said, her neurologist needed her to keep a diary initially and still does now so they can monitor the effectiveness of any meds. We have tried many different meds - from paracetamol up to triptans and then preventatives. Having worked through pizotifen and propranolol, she is now trying amitriptyline.

Over the years we have been trying to get a handle on things, the only triggers we have really identified is illness, other than school work. Concentrating for long periods of time, as they do in school, seems to be a big problem, but is not easy to avoid!

Re school - there are a couple of factsheets for schools about migraine which may be helpful including this one from GOSH

https://media.gosh.nhs.uk/documents/RCGP_School_Policy_Guidelines_for_School.pdf

Parner had these, found out after they had a stroke that the had a Patent Foramen Ovale, PFO hole in the heart. Fixed at age 61 and now no more migraines. 25% of the poulation have them. Ask for a bubble test and go private if you you get knocked back by your GP.

Maybe ask the neurologist about vagus nerve stimulation: https://gammacore.co.uk/?srsltid=AfmBOoog6nT-D9YMlGEJ4vypEWPQdTh5v2lfb0s4eAK-ZQr0Sy5yGQsj

I don’t know much about it but sounds promising. I hope you find something which helps for your daughter.

Thanks, as we aren't in UK we have very easy/direct ways to access specialists so she'll actually be seeing a neurologist next. GP only somewhat helpful, they prescribed the triptans but suggested neurologist as next step.

Unfortunately not in UK. We have access to good care here, but haven't found a similar service...

Last week she was right as rain after taking the nasal spray. This week, she was fine after taking the meds for the first and second migraines - up and about, OK to go to school, not struggling at all. But today it's another story. She also has important tests on some days and missing them stresses her out even more > vicious circle. It's such a balancing act.

All our appointments with them were online

Tour DD has my sympathies.

My eldest DD sounded just like this. We had neurology etc with no obvious trigger but hormones were listed. At 18 she has largly grown out of them and is at Uni.

Youngest 13 started with them in last year, she knows to take her meds as soon as it starts and now use anadin, its the only pain relief that seems to work.

Growing up my sister had this, she went to a neurologist and nothing helped until randomly acupuncture was suggested. My sister was so desperate she agreed despite hating needles. It worked! No idea why, we're not the kind of family that would normally go for alternative medicines at all. But it did, I really would recommend it

I used to suffer terribly as a teenager. Going on the pill stopped them. Speak to your GP. It was such an easy fix.

We had this with DS. His were daily. He’d get up and get in the shower and get a migraine. His would only go if he slept them off. He missed lots of school. Did his GCSEs at home with an invigilator. We tried the GP and various medications. Acupuncture, chiropractic treatment, cranial osteopathy, kinesiology etc etc. Saw the National Migraine Centre. Nothing helped. Eventually he realised himself that he needed some psychological help and he saw a psychologist which did help. He was stressed but didn’t really recognise it.

Did his A level mocks at home because of migraines and was still missing a lot of school. I have to say school were great and made lots of adjustments for him when he did manage to go in and sent work home when he didn’t. Eventually they dissipated and he finished out 6th form and managed to do his exams normally at school. And hasn’t had a migraine since.

He does still get headaches and has seen a neurologist and is taking Amitriptyline. But no migraines.

It is definitely hard to get teens to follow what they should with diary and food etc. And with girls the hormonal fluctuations is an issue too.

I think you have to sit down with her every day and do the diary. It might be the only way to get her to focus on it.

I started to get migraines fully a few months ago - I have had them for years but because they didn't have the typical headache I had no idea that is what they were. I get vestibular migraines, where you get flashes in the corners of your eyes, vertigo, nausea and my light tolerance goes. I wear my sunglasses every day unless it rains, but I had no real idea this was because of the light intolerance, just that it was more comfortable. I say all this because often we associate migraines with just the pain, when actually they might be longer and have other symptoms. https://www.nationalmigrainecentre.org.uk/ was recommended to me on here and the info is very helpful.

Sumatriptan is the best for the pain, however longer term and to prevent them happening a 80mg dose of proprananol daily works for me. I have slow release tablets and so far, 3 months in, they have kept all migraines at bay, bar the odd low level symptoms just before my period, where they don't fully emerge but I am aware without the meds I'd be suffering.

Mine went when I started taking magnesium supplements for something else (was also taking other nasty prescription meds, so it may have been those but the timeline seemed to be the Mg).

When I got them I would drink a liter of water, with some lemon and honey if I had it. Seemed to sometimes stave them off.

Good luck and push for investigation. Keep a diary and show the doctor.

americanmigrainefoundation.org/resource-library/magnesium/

Put her feet in a bucket/bath of very warm water. Just her feet. Cold flannel on her neck and head. I’ve heard this works wonders although not tried it myself.

I used to have debilitating migraines. It’s not necessarily a life sentence mine cleared up once I had kids weirdly

No magic wand, I'm afraid but I just wanted to give some hope that her migraines are unlikely to be consistent through her lifetime. Mine started at puberty, peaked during my second pregnancy in my mid-30s and since have changed in character (all aura, seldom any pain) and frequency (one every 6 months or so). I'm unsure of my triggers - though hormones seem likely, but stress, dazzling lights and dehydration do play a part.
One thing that does help me with the pain, is a spoonful of knock-your-socks-off chilli pickle. I know it's weird, but there's some theory behind it - I only discovered it as I used to crave spice when I had a migraine coming on.

Please ask your G.P for Pizotifen.
My daughter was really suffering with migraines some would last for days. Doc gave her Pizotifen and they stopped pretty much instantly. She only had to take it for a couple of months. It was like a system reset. Three years later she is still migraines free.

PP have mentioned keeping a diary - download migraine buddy

PP mentioned sleep - Is she oversleeping ? This is one of my triggers and why I've been suffering for the last few days. It unfortunately for me is a side effect of my migraine medication

You have my sympathy. Despite having good health all throughout life, migraines are the one thing that has hit hard, I have a family history of them and all I can say is that over time you will get to know

1. what the triggers are (mine are stress and food related, almonds and too much milk hit hard)
2. what you can do when one starts to kick in and if you can defeat it before. (for me it's a over the counter type medication)

Everything changes when one kicks in for me. Mood, thought process, outlook on life (always negative) it's horrible. Once it's over it's like I've washed up after a storm with a new fresh outlook on life.
So many events, occasions and opertunites have been lost in my life because of it as in the early days I didn't know how to handle them. Things are better now. You have my understanding though and thoughts.

Also to add, I know when a migraine is coming on (as opposed to a headache )as I start to yawn loads and my eyes water. That's the crucial point when I need to act before I let it take over

My daughter has migraines and has done since she was about 7/8. At aged 13 along with some major PMT, erratic periods and mood swings. After seeing the GP, she was put on the mini-pill which effectively cut all of that out. She still got the occasional one but for the most part they stopped. She has come off the mini pill this year and her migraines have returned with different symptoms now. She is seeing her doctor regularly about them but they still appear to be related to her cycles.

In the meantime, I started getting them a couple of years ago, with aura. I take a prophylactic dose of amytriptiline which keeps them at bay for the most part. Rather then being related to cycles, mine started with menopause.

I'm sure it's been mentioned, but have you tried cold and flu pills?

And icy cold Coke. And crisps.

My teen Dd had migraines. Your thing about your Dd not getting them at weekends rang a bell.

Mine got them from whiteboards. Really severe. Anti glare glasses really helped.

I started getting migraines when I was 13, I’m now 49. Over the years I have worked out when one is coming, which is hard to do and took me years but she needs to try to remember symptoms before they start so she can get ahead of it. Mine are pins and needles in my fingertips, and my other symptom is “Charlie browns teacher” if you know what I mean by that, everyone talking sounds all muffled and weird. I have a tens machine type thing that I got from Lloyds pharmacy that sticks to the forehead, paracetamol with caffeine, full sugar coke made flat by shaking it up as the carbonation makes me sick, and I never go anywhere without that stick called 4head. I also use the pad u put in the freezer. Just some suggestions you may have already tried. I had very bad eyesight with very severe astigmatisms in both eyes, since I had laser eye surgery the migraines have lessened. Has she had an eye test? What about the ear piercing that people say helps with migraines and headaches?

Thanks to all, so many helpful answers.
She spent all day in bed yesterday, recovering. She has another migraine today.

It's hard to spot "warning" signs as they almost always come on in the morning, just after she's got up - within an hour usually.

She'll go to see the GP today, as she'll need a doctor's note for school. I'm going to ask about melatonin. In this country you can buy high dose melatonin over the counter but I prefer to do it under medical supervision. It seems like something she could try in the meantime while we wait for the neurologist appt next month.

My heart is breaking for her, she is so bright and has so many dreams for her last year of school. I'd honestly do anything to make this go away for her.

I'm a relatively new migraine sufferer and started amitriptyline for prevention after 5 weeks of almost daily symptoms earlier this year. Only 10mg, the lowest possible dose but it has worked wonders! GP and me started with the intention of going up to 25mg once I'd got used to the effects (nothing major for me - slight constipation and very vivid dreams, but not at all nightmare-ish) but the starting dose has been enough! I still get the visual aura maybe once a fortnight now, but more often than not it doesn't progress beyond that since starting meds.