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

It could still be the case that her hormones are a bit out of whack. How are her periods generally? Are they regular? I suffered from migraines as a teen and ended up being diagnosed with PCOS. It took a blood test looking at hormone levels and an ultrasound (I'd already had tests looking at other issues, e.g. an MRI from neurology and a nasal endoscopy from the ENT dept). Going on the pill seemed to sort it all out. All the best, OP - I hope you find a solution soon💐

I completely agree with @Dolamroth about doing the diary before the neurologist; it will speed things along.

I get she’s a teenager. So was I. Unfortunately the diary is a big part of becoming able to manage what is a life long condition. I also get that she doesn’t want to miss out on anything but does she want a migraine three times a week?!

It probably isn’t the clichè ‘cheese, chocolate and red wine’. Citrus fruits, bananas, raisins, figs, dates, Foods containing nitrates like processed meat, bacon and the like. All common triggers.

Sometimes you crave a food during the pre-migraine phase (but it’s already started) and you blame that as a trigger.

The neurologist will ask her these questions so she does need to buckle down and keep the records before the appointment.

Fellow sufferer here, along with my teen DS. I agree with the above - she needs propanalol (beta blocker) as a preventative as well as a triptan in an attack. It’s been a game changer for both me and my son in terms of the frequency of migraines. We both have slow release pills which we take every morning. With the triptan, there are plenty to try so ask to change.

For years I tried finding the trigger, but I think it’s stress. Now I just take the meds and accept it. I felt like absolute rubbish when DS started suffering, but advocated from the start that he needed the drugs.
I hope all goes well for her.

It's tricky, I would hope the desperation to be pain free would motivate her but teenagers are tricky beasts!

Maybe tell her if she doesn't keep the diary before this appointment, they will probably tell her she has to do so before they can help and the next appointment will be ages away. Possibly some kind of bribery?

I’m a migraine sufferer. I’ve found using Angela Stanton’s migraine protocol helpful - balance electrolytes and keep your blood glucose level as stable as possible. I’m very sensitive to dehydration (a lack of minerals) and blood sugar swings, they often bring on a migraine. That and stress too!

Bribery! of course. Never fails.
Needs must...

At that frequency she would be offered prophylaxis; I was when I was getting them every four days. This was during my degree, and my desk chair at halls was very bad. I have since noticed that spending hours a day working in an unsuitable chair gives me migraines, I think via something in the neck area. So if she is prone to studying in uncomfortable positions, that might be something to look at.
(I recorded food and drink triggers for ages but never found anything. Also some things can be triggered just before the aura, such as a craving for chocolate, so you can think chocolate gives you migraines when it's the other way around.)

Got to buckle down and get to work here but a huge thank you to all the posters already. It's really helped, and I feel hopeful rather than desperate now. I'll check back again later.

My daughter has had migraines / headaches for about 9 years.

Before I talk meds etc - just really quickly re her exams it’s really important you and her go through the exam boards special conditions to consider what might help her. Then you can discuss this with the neurologist and ask then to write to the school requesting these. Like would she find rest or movement breaks helpful / going into a quieter or smaller room. Research if students get extra time for migranes etc.

re meds - research propanol. It’s a beta blocker. It’s used to prevent migraines by controlling the blood flow around someone’s body. The med your daughter currently uses restricts blood flow to her head. Beta blockers will make sure her blood flow is regulated so it’s flowing evenly in a timely manner all the time - rather than having parts of the circuit rushing quickly and needing to be reduced. It’s used for migraine preventation (was a life changer for my daughter) but it’s also used to manage stress because it dampens heart palpations. She’s likely to be offered something like 30mg - that’s a very low dose and worth trying to see if it helps.

I’ve realised neurologists are not all equal! We’ve seen 4 or 5 both privately and on the nhs. But there is a school of thought that to help migraines its a whole body approach ie making sure she exercises, gets out in nature, looks at diet etc etc.

also please find her a cranial oesto - they are qualified oestos who will specialise in checking the bones in her head are where they should be. They do such gentle movements they work on new born babies and you don’t feel a thing.

also, please also research into POTs it’s a condition teen girls develop. During puberty their autonomic nervous system does not develop at the same pace as their body and their body fails to control some functions like blood flow. This results in their body experiencing dips in blood to their heart and brain and they then get rushed of blood to both. With the headaches it’s like doing a head stand - the blood rushes to your head and gets stuck there causing the headaches.

if you have one of those finger tip oxygen monitors (about £20 on Amazon) you can check your daughters heart rate when she wakes up in the morning (ie has not gotten out of bed yet) and then if she then stands up for three minutes check her heart rate again. If it’s gone up by more than 30 beats (ie was 80 then went up to 110) speak to your dr about pots. That’s the blood rushing to her head.

Late for school with a migraine? That sounds hard. I wonder if this time, giving into it a bit more and resting up on day 1 would have let her kick it properly.

Hindsight and all that. Everyone's different I need daytime sleep to get over migraines. Just battling through with my sumatriptan is exactly what will make it last for days.

Also consider asking the neurologist to try melatonin if sleep is an issue. Melatonin in the uk can not be described by the gp - only neurologists and psychiatrists so worth asking to try that during your appt.

You say she's a night owl. Is she using her phone in bed?

Bright light from my phone can set me off.

Also, some perfume.

I'm a long term migraine sufferer and diet is a huge trigger, especially dairy products, sugar, and gluten

I too am a migraine sufferer. My neurologist has told me the sumatriptan spray is not as effective as the tablets. My sumatriptan are 100mg as soon as migraine occurs. Some people swear by full fat coke and salty chips at onset although this doesn’t work for me. I have a migraine cap which you can keep in the fridge but I keep mine in freezer in a freezer bag and put it on as soon as I know migraine is coming. I also force myself to drink a large glass of water or squash before bed as sometimes I find at the air quality isn’t as great when I’m snuggled in bed .. no window open etc and have woken in night with migraine.
I’ll attach photo of cap.
good luck!

One of my DC had chronic migraine since early childhood - took the beta blocker Pizotifen for many years and this really worked in terms of frequency and severity. They have now pretty much “grown out of” suffering (late 20’s) with only the occasional attack treated by OTC drugs. Ask your doctor if a beta blocker is worth trying. I completely understand the concern about disruption to education!

When was her last eye test?

For me I found through a combination of trial and error (mainly error) that flashing lights, especially in the dark would be enough to set me off. Motorway street lights in the dark also did it on one memorable occasion. Yeah, I wear sunglasses at night more than during the day (and no, I dont drive either so no worries there).

I suspect you should also look into if she has inattentive adhd. The scattiness is she’s thinking of lots of things at the one time. I think my daughter’s inattentive ADHD contributes to her migraines / headaches and her anxiety.

Your poor dd what a miserable existence.

you have to keep bothering the gp for a referral to a specialist if the migraines are this severe and frequent and disrupting life. Don’t give up.My dbil has been seeing a specialist for decades and it has helped - he got access to far more help, advice, new drugs etc.

Triggers is definitely the thing to be focusing on - migraine diary and she must keep it herself - have a stern chat about making adjustments. My dd has a physical impairment she must do physio every day and the teen years have been a nightmare of non-cooperation.

My migraines are triggered by stress, lack of screen breaks, dehydration, PMT, allowing my blood sugar to drop too low, sudden changes in air pressure, and sinusitis
Also recognising the “tells” of an attack - that took me about a decade but now I can sense when the migraine is coming on before the big symptoms arrive, can’t really explain it.

I’ve had awful migraines since I was a teen (now in my late 30s), non-responsive to sumatriptan and the only thing that has helped for me is this. It gives little electric shocks in to your arm. It is pricey and not available on the NHS but it has been worth it for me. I think mine are definitely hormonal - the only time they have disappeared entirely was when I was pregnant. https://www.nerivio.co.uk/pages/drug-free-migraine-relief-treatment?utm_source=google&utm_medium=ppc&utm_campaign=dr_nerivio_2025_b_ex&utm_content=nerivio_for_migraines&utm_keywords=nerivio_for_migraines&gad_source=1&gad_campaignid=22567475920&gbraid=0AAAAA_oTwGbxpyAvWNYlPIi2cpyOdR-8S&gclid=CjwKCAiA8vXIBhAtEiwAf3B-g55ZikRdW_dPDkXgW4PM30cZwPCJb0L3kczVP6gmNDRDpHVVed_e3RoCeCMQAvD_BwE

I highly recommended National Migraine Centre. They are charity (so will ask for donation) staffed with NHS doctors, our appointments were all online.
https://www.nationalmigrainecentre.org.uk

My DC had horrific migraines that also kicked in during puberty, massively affected school attendance etc. Her NHS neurologist was pretty useless - kept trying her on different meds without looking into what causing them etc. Our initial appointment with NMC lasted about 2 hours, was very thorough & covered her complex medical history etc
Eventually doctor from NMC suggested she might have quite rare immunological disorder (that I’ve never even heard of). Long story short, 3 years and lots of complex tests later, she’s indeed diagnosed with that disorder, on correct meds and is relatively migraine free. I will be forever grateful to that NMC doctor

I had awful migraines in my teenage years when my hormones were all over the place. Medication never fully helped and I could never pinpoint triggers. Once I was in my 20s these had nearly completely vanished and I had probably less than a handful and these were all when I had accidentally messed up my pill and missed a couple of days then started taking it again. I then got pregnant at 31 and they came back with a vengeance. Stopped as soon as the baby was born, but am now really struggling with second pregnancy, but at least I know for me they are likely to stop again once baby arrives. Basically, I don’t have much help other than try not to panic it’s a life sentence, they might settle down once she’s out of her teenage years like mine did. (A helmet thing that goes in the freezer and peppermint oil on my neck and forehead are non-medical things given me some relief right now)

I would try acupuncture. In fact a neurologist recommended it after a ct scan and finding nothing wrong internally.

There are several different options for regular medication to prevent migraines, when they are happening this frequently that would be the obvious next step. GPs can prescribe most of these- have you discussed this with your GP?
propranolol, candesartan, amitriptyline, topiramate and remegipant can all be prescribed in primary care. There are pros and cons to each that you should discuss with your GP.

I was popping on to say what @ClockGoesBack said. Try the National Migraine Centre. If you lay you can see someone really quickly but otherwise there's a few months' waiting list.

They are well worth it though no has a 45 minute call with a migraine specialist and she did a real deep dive into my lifestyle, what I had already tried, my hormones, food etc. She then wrote a report with recommendations for both prevention and treatment and sent it to my GP who prescribed what I wanted.

If you're waiting then do check out their podcast series which is amazing and covers everything you could possibly want to know from every angle.

It could be menstrual still even. If weekly. I find I get ones week before ovulation, week after, week of period, week after. I have other symptoms too which makes me think they are hormonal.