Migraines - really worried

[Worriedworried1]

My dd13 has been suffering migraines for nearly a year. First few were monthly, with visual aura followed by eye pain, then bad headache and nausea / vomiting. Prescribed odenastron which when taken early nipped things in bud. Advised it's likely hormone related. Then didn't have any for a few months. Had another in May. The no more until this week where she has one on Monday, another on Weds and another right now.

I'm beside myself with worry. The 2nd one (Weds) was horrific, I think because we didn't get meds in time, and ended up at hospital. She had tingly hands, tongue, legs felt numb and was sick every 20 mins. Once they could keep meds in her, things calmed down. they thought another migraine but to come back if it persists. Was fine for 2 days, and now this eve she had visual aura and now has head ache. Took odenastron almost immediately, and had had mild headache and eye pain since.

I've never had a migraine so no idea what is normal or not. I'm terrified for her, worried it's something sinister or that her life will be ruined by these.

She has a doc appt on Monday and I will push for further investigation, but in meantime, aibu to ask for reassurance from migraine sufferers - has anyone has migraines with this frequency and it been ok?

I’ve had clusters of them before. The last lot I had was the end of August where I had 8 in the space of a week!
Turns out mine were caused by the tail end of a sinus infection. Definitely push for further investigation. They could also prescribe some beta blockers to prevent. I’ve never been on them personally but have friends who have and haven’t had any issues

Migraines are horrendous and are often hormone related for women.

I’d discuss hormonal contraception with the GP as that might be the realistic short term fix, even if it’s something to be informed about to come back to in the future.

What you describe for a migraine is quite normal. They can be milder or they can be worse. There are other medications but some of them are quite heavy going for such a young girl.

She started her period a month ago , and so when she had migraine on Monday, thought her period was due. But no sign..then thought the same on Weds... My reading up on hormonal migraines suggests one migraine 2-3 days before period. Appreciate early periods can be all over the place but have but such hope in these being hormonal and now not sure.

Yes rebound migraines are common. What's she taking to treat them when she has them? Some are more likely to cause rebound than others.
Check with GP first due to age but try vitamin B2 riboflavin flavin 400mg a day. It's in the NICE guidelines but almost never suggested. It's the only thing to ever reduce them for me and it has no side effects unlike all the prescribed prophylactics.

I've had them since I was 9. I'm 33 now They are horrendous. Had one during a gcse exam and failed it miserably. Also my wedding day. I have aura, a strange taste as well, and possibly looking back after a migraine, my mood 24hours before, changes as well. I take sumatriptan injections or I couldn't hold a job down tbh as sometimes I get them 3 or 4 times a week. My neurologist is working their way through preventative drugs but no luck so far. It is completely debilitating as I can only take so many injections before I have to "ride it out" in a dark room, but I'm usually delusional through pain at this point. My sympathy is with your daughter and you. My mum spent many many nights sitting with me when I was younger, holding my hair as I vomited. Sadly for me what you describe is normal.

Migraines can be so scary when you’re young and they really are awful. Propranolol is a beta blocker which is often really good for migraines. Quite often the medication they give to treat migraines it is often too severe and late to help much (think similar to paracetamol in labour).

PP mentioned contraception but as she has had migraine with aura, it is unlikely they would put her on combined pill so more likely to look at mini pill.

Doctors often fob migraine sufferers off so please keep pushing for your daughter as these are really awful untreated and can really make life unenjoyable.

As a reassurance, medication can often reduce migraines significantly and lead to normal day to day life. If possible, keeping diary of food, sleep, periods etc can be helpful. Dark room and as much rest and sleep (which may be difficult) as possible.

I suffer up to 28 attacks per month when unmedicated, so yes this is a fairly common frequency your daughter is experiencing. Unfortunately I was the same age when mine arrived, but I have a huge familial history (mum, gran, dad, both his parents, brother and now my husband!) so it was well within our "norm".

Migraine types can vary enormously and attacks can as well. They will tell you attacks last up to 48-72hrs, but my worst was weeks. I've attached a chart I find useful to illustrate how a migraine works, but take the times with a massive pinch of salt. I call the postdrome a "hangover" feeling - exhausted, with a "shadow" of the pain I had during the attack, and physically like I've run a marathon with joint pain etc. I also have huge sugar and carb cravings in the run up to an attack and my scalp starts to feel tight 24+48hrs before pain begins.

Please don't panic, all the descriptions you've given are well within the norms of various migraine types (sounds like hemiplegic attacks which I also get - you'd think I was having a stroke if you met me) and migraine itself does not lead to brain damage or cause more serious illnesses.

Please look at good resources like The Migraine Trust: https://migrainetrust.org/live-with-migraine/

And read up on the options on the NHS for a child's treatment of migraine: https://cks.nice.org.uk/topics/migraine/management/young-people-aged-12-17-years/ - I've used this to beat GPs up over the years to access a new treatment or similar.

Please also know that the evidence shows that the better managed migraine is in the early stages and early years ehbr it's episodic, the less likely it is she'll move into chronic migraine. Unfortunately for me I grew up in the 90s and it was badly managed with inappropriate medication (Migraleve should be banned IMO) but your daughter will have access to nasal spray triptans which simply didn't exist when I was her age, and these are incredible - they can turn off attacks in 20mins if you catch it nice and early. I also find that getting the nausea under control quickly can actually prevent an attack building into anything serious. Hopefully they'll work for her.

I'd also highly recommend a pair of Migralens sunglasses for an attack - it takes a lot of the pain out of light sources and I wouldn't be without them now. I get mine from the RNIB so they get any profits and it's still cheaper than Amazon! There are other styles available from Amazon etc if these are too old for her https://shop.rnib.org.uk/purfect-migralens-ladies-sun-glasses-green-2738

Don't be frightened of trying preventative medication if it is offered, it can be life changing.

Big hugs to you both, it is scary when it's so new and unexpected.

I got migraines very badly in my mid teens, almost exactly as you describe with your daughter! Mine stopped around 18 (I remember because I went to uni and I was so worried about getting one there!). Every now and then I get an aura followed by a headache but I’ve never had them as severe as I used to. I hope things get better for your daughter, migraines are horrible!

I get aura migraines and they leave me out of action for 2/3 days. I get symptoms similar to a stroke. I'm on amitriptilyne for mine. I take one when symptoms start then if they have eased within the hour, I take a second. If I don't take it at the first sign, then I lose feeling in my arm, speech slurs, legs go and pins and needles.

Mine are stress and hormone related but strong scents can also start one, such as artifical air fresheners, the air fresheners that puff out the stuff and strong perfumes and aftershaves. My mouth goes dry, sickness and vision goes blurry. The first time it happened I passed out and wet myself.

I'd recommend tracking them and the symptoms they appear, as much as she can remember, that why she can recognise when one comes and you can if there's a pattern, eg before her period or a particularly stressful time.

It's definitely worth investing in two cold caps too. Mine were £20 each of Amazon. Keep them in the freezer and it helps to ease the pain and pressure. They are tight and can be painful because of how cold but if you leave it on 5 minutes, then take off for two minutes, then leave it on. You can feel like a crackling sensation as the pain eases. They pull right down over your eyes.

I had to keep track of mine as I needed to have 5 in 12 months before they would do anything about it as well as a list if symptoms and potential triggers

I signed up after reading your post Op.
Definitely talk to the doctor about prescribing Riboflavin as a previous poster said.
My teenage daughter has severe migraines aswell. She has the contraceptive implant (only since 15 though). She's on nasal sprays called Zolmitriptan, the Riboflavin and Propanalol. She also has antisickness tablets.
She is better on these medications although still gets the occasional migraine.
It's really affected her during her GCSE'S unfortunately but definitely inform the school. To start with school were unsympathetic about time off sick, until we spoke to the right person.
It's worth looking at the Migraines Trust website. I hope things improve for you and your daughter!

Hi my dd has suffered from migraines for about 5 years now, she is now 16 and takes propranolol daily and cyclizine and paracetamol when she has a migraine. I didn't find the GP's could offer much, they felt it was hormonal so wanted to start the pill (can only take the progesterone pill with migraines) we didn't agree as it didn't fit with her cycle.

I contacted the national migraine center and paid for a video consultation and it was worth every penny. It is a charity so you don't have to pay, they suggest an amount.
Anyway, they gave my daughter a plan and a rescue plan and compiled a letter for the GP with recommendations, off the back of this she was referred to paediatrics who organised an MRI and propranolol regime.

My dd has gone from weekly migraines to maybe 2 a month.

Very similar symptoms as your dd but with memory loss and speech problems too.
Good luck it is very worrying.

Echo pp re migraleve the migraine centre told us not to use these. Sadly my dd didn't get on with most tryptans although I know lots do.

I've had migraines since I was 7, now 50. Mine are very similar, visual aura is the first sign, can take a variety of forms including blind spots, flashing arcs and also not perceiving things properly. Then I have a fairly predictable set of other aura - tingling and numbness in various parts of my body, confusion, word finding / expression difficulties and then the headache. I have taken amitryptiline for a few years now as a preventative which mostly works - I have a few a year now.

Mine are hormone linked, but there are also lots of other factors that increase the likelihood I'll have one - they include being very tired, and conversely having a very good sleep after being very tired. Stress, hunger, thirst, too much sun, and dietary factors like cheese, chocolate and strangely spinach. Spinach is a odd one, but every time I've eaten it I've had a migraine within a few hours,

It's like a cumulative effect for me, none of the factors apart from cheese chocolate and spinach will trigger one, but say I'm really tired and then go for a long walk in bright sun without having access to a drink, that could trigger it off. Keeping triggers in mind, and avoiding some if there are others present means I have fewer nowadays.

Migraines are very scary, but definitely manageable x

Hi op, I've been a migraineur since I was a teen. My migraines are hormonally related and puberty was hard work. Migraines are no fun, so I really feel for your daughter. My symptoms and frequency are similar. I'm not familiar with Ondenastron - do you mean Ondansetron? If it is Ondansetron, I believe that's for the sickness. Have they given her anything for the headache?

My tips would be the following.

1. The basic 'Migraine buddy' app is free and helps capture lots of detail about the migraines.

2. Track periods as well - I use the free version of the Clue app (which also lets me record when I have a migraine). This has been a godsend - I get migraines when at the start and end of my period and also at ovulation. I see that now but without the record keeping it all felt random.

3. You might need to try a few different anti-emetics to find one that works (for example, Buccastem makes me throw up more).

4. Have a look at the Migraine Trust website for good advice. They have a section for children and young people.
   
   https://migrainetrust.org/migraine-in-children-and-young-people/

5. Personally I find the soft type of migraine cap a godsend (the ice packs in the ice pack ones are very hard and uncomfortable - but I suppose some people must like them).

6. If she is prescribed triptans, the triptan on its own isn't always enough to make the pain go away. I usually need to let the triptan kick in and then take ibuprofen on top. Paracetamol doesn't touch it. The magic combination seems to vary for different people. My rescue combo is anti-emetic, triptan twenty minutes later, another twenty minutes then slice of dry toast, ibuprofen, pepsi max (for the caffeine). Sometimes nothing works, but a migraine without vomiting is always better than a migraine with it.

7. Keep an eye out for Dr Katy Munro on social media. She's very sympathetic and great at explaining all things migraine. She had a book too - How to manage your migraine.

Fingers crossed the doctors can get this under control for her soon.

Oh sorry to hear that, sounds grim. I've never heard of them coming in clusters but reassuring (however shit) to hear that it's part of migraine 'suite'. I hope you are ok now.

I got migraines during puberty, pregnancy and now in menopause. So it's safe to say mine are hormonal. I always get cluster migraines. At least 2 or more over a 5-7 day stretch. I get strong aura, so much so that I can't see and I also lose my speech. I've ended up in hospital 3 times as the symptoms mimic a stroke. I don't get a headache but I get really docile and all I can do is sleep. It takes me a good 72 hours to get over mine. I'm always left completely exhausted. The last bout I had led to 2 weeks off work as I just couldn't function.

It can be really distressing for those around me to see me have a migraine, so I know it must be upsetting for you to see your daughter so debilitated. I have tried propranolol but it made me very dizzy so now I carry sumatriptan with me everywhere I go to take as soon as any hint of a migraine starts. Mine are triggered by sunlight, which is difficult to avoid! But I wear dark sunglasses all the time to help.

With a bit of luck, once your daughter's hormones have settled down hopefully the migraines will too.

Sounds like hemiplegic migraines - with the aura, blurred vision, confusion. I’ve had them since I was a teenager and they’re awful.
For me, they’re hormone and humidity related but do get triggered when I’m ill too.

Someone suggested contraception but I found the combined pill just gave me constant migraines so I only had the mini pill but actually no contraception is much better for me.
I tried beta blockers and other daily meds but had horrible side effects,
I take Zolmitriptan as soon as I feel the aura and that seems to be the only thing that helps - o don’t know what age you can have triptans from though.

I’m so sorry for your daughter and for the worry it’s causing you.
I was like this age 12. Mine were largely caused by hormones and I was also under a huge amount of stress at the time which is one of my triggers.
They became less frequent by the time I was 16 but I didn’t have medical intervention, only migraleve.
Hopefully things have improved since the early 90s and your daughter will get the correct care and treatment.
Thinking of you both.

Keep an eye out for Dr Katy Munro on social media. She's very sympathetic and great at explaining all things migraine. She had a book too - How to manage your migraine

This is good advice. I’ve had a consultation with Dr Munro and she was lovely - she's at the National Migraine Centre in London and I do strongly recommend a visit there to anyone who's not getting anywhere with their GP. It’s a charity and while a fee is usually charged, it’s definitely worth it. Something to keep in mind, @Worriedworried1 ? They are the experts. But please be reassured that your DD will almost certainly develop her own strategies for dealing with them, as all of us on here have done, through experience. It’s not pleasant but there are ways to spot triggers, avoid them, and often head off the worst of the attacks - though sadly no way to cure completely.

(Migraine sufferer since I could talk here - I started complaining as a small toddler about the pain in my head and being sick. I had them very badly all through childhood and adolescence, classic one-sided migraine with vomiting, and spent a lot of time lying down in dark rooms. Ergotamine was the treatment then! Thankfully they eased off in my 20s but returned in my 50s, transformed into low-level but interminable attacks that went on for days/weeks. I now take daily Topiramate as a preventative and treat attacks with Zolmitriptan).

Sounds very normal for migraine although horrible for your daughter.
I have chronic migraine-normal, hemiplegic and vestibular, despite being on a massive cocktail of meds I'm currently on week 6 of daily migraine. For most people they can be controlled with a preventative medication and some medication for acute attacks though.

Also came to say possibly hormone related, I suffer quite badly and the main ones I get is always round my period, I get one as it's approaching, I get one on the day 2 which is a super heavy day(sorry tmi) and that's usually the worst migraine I get as I'll be vomiting etc with it, and one at the end of migraine. Consultant reckons drop on estrogen or something, but if I take sumatran it will go away thank god. I get cluster headaches throughout the month then.
Poor DD, they really are so debilitating 😩

Out of interest has she had a recent sight test? Sometimes this can be a trigger, spending time on screens etc. could also be worth looking into for her?

Some people, like me, have chronic migraine. This basically means you have more migraine days than ok days.

It may also be the case that your daughter’s medication isn’t fully switching off the migraine, so the same one starts up again when the medication wears off.

The weather has also been really changeable with rain and storms this past week where I am. Lots of migraineurs are human barometers. We can sense the rain hours before it arrives. I’ve only realised how sensitive I was to this recently. New effective medication means the rain keeps taking me by surprise now and it’s very odd.

I hope she feels better soon x

Beta blockers are awful and make you feel terrible.. My mind felt foggy when I was on them to the point I rather have the migraine.

OP - I've suffered from childhood and it's about understanding what the individual triggers are. Then when it's about to start to take medication as quickly as possible.

I have to sleep in a dark room, be physically sick etc before I start feeling better. Can last up to 3 days.

Things have improved as I've got older.

My DD13 had daily migraine. Every single day for about 6 months. She would just get a headache and sometimes dizziness but no other symptoms. But she was missing school every day and the GP was completely disinterested and basically shrugged their shoulders and told her to take paracetamol which did nothing.

Ended up having to pay for a private paediatrician appointment who gave her a preventative tablet (topiramate) and within a month they had stopped. She gets maybe one every 3 months or so now and just like a normal mild headache. It's definitely worth trying a few different things.