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?

Beta blockers had zero side effects for me, but they also didn't really work for me.

Remember that your experience of side effects will be not the same for everyone. I had to come off topiramate because it nearly ruined me and ruined my marriage and career... But it works beautifully for many many people!

I used to suffer terribly as a teenager. Very rarely get them now, thank God, and they tend to be sleep related- too little or too much of it- or weather related. When the pressure changes and it gets humid, my body gives anxiety-like symptoms and it sometimes leads to migraine too.

The pre-migraine aura is really weird for me- it's as if I see ghosts from the corner of my eye. Whenever I see ghosts, I know that a migraine's on its way. The only thing that helps with the pain is to place my fingertips on my temples and bridge of my nose, where I can feel the blood pumping. Sounds silly but it really helps me.

@ButtSurgery

Could you explain more about your comment that ‘Migraleve should be banned’ please.

i have suffered Migraine for 50 years. Have seen numerous Doctors over that time, tried numerous treatments and never got close to finding a treatment that can prevent an attack or even minimise my regular 72 hours of hell.

The only thing that can sometimes ward off an attack if started early enough in the aura phase is Pink Migraleve.

Is there an issue with Migraleve that I am not aware of?

I have recently had a Migraine referral made by my GP bounced because the Consultant wants me to revisit a whole range of meds which I have already tried over the years and I am currently at a loss as to what to do next. If there is an issue with Migraleve I think I may be forced to cope unmedicated.

Totally understand your worry. My DD gets those ice pick headaches which are migraines, apparently. She gets visual disturbance too.

She was referred to a paediatrician who did prescribe pzotifen (sp!) but i was so worried DD had a brain tumour!

I managed to get an MRI brain scan for DD and it was normal so that put my mind at rest.

In actual fact DD finds her migraines more managable since leaving school so i think stress has played a major part.

I did also totally change her diet for a few months and cut out all processed food. Not sure it helped.

The primary ingredients in Migraleve are paracetamol 500mg and codeine phosphate 8mg. The buclizine is the antiemetic.

8/500 co-codamol is far cheaper to buy then have the antiemetic separately. You can buy

However codeine is NOT recommended for migraine. As a young teen I popped both Migraleve types like sweeties, desperately trying to get pain relief but they rarely worked. I ended up essentially addicted to them and having huge rebound headaches which is very very common. Going cold turkey was hell on earth aged 18.

https://cks.nice.org.uk/topics/migraine/management/adults/#acute-treatment - NICE states opioids (includes codeine) are not to be prescribed for migraine. Unfortunately, the BNF states that Migraleve / a generic version is suitable for migraine prescribing so it's very poor advice. https://bnf.nice.org.uk/drugs/paracetamol-with-buclizine-hydrochloride-and-codeine-phosphate/

There are 7 triptans now, with multiple preparations. I find that an antiemetic taken with a triptan works for me - the gut slows down during an attack, which is why so many of us are nauseous or sick with migraine. Taking a pill on top of that is unlikely to work well as your stomach isn't digesting properly. Using a nasal spray triptan, the melts or even injectables is a game changer.

GPs can also now prescribe one of the gepants for acute use for migraine, you don't need to be under neurology.

Things are moving on quickly and Migraleve should be left far behind!

Beta blockers worked well for me too. I was on them for about 10 years from the age of 13 cycling between propranolol and atenolol. Eventually I just got too used to them and they stopped working but they were brilliant while they lasted.

Totally agree. Even recently GPs have offered me opioids for migraine…one even offered me the large 500ml bottle of oramorph.

I should have accepted it and sold it on a street corner to pay for the Vydura I get privately.

Rimgepant has changed my life but I got an email from the surgery manager to tell me they don’t prescribe it. Full stop. My GP had no say in the matter and was quite apologetic when I had my appointment to discuss the neurologists letter.

I also take it as a preventative which NICE haven’t licensed it for yet. But t my GP doesn’t give it as an acute treatment either.

Has she had an eye test? My daughter would wake up with a migraine and we found out she had raised pressures in her optic nerve, she had a lumbar puncture to reduce the fluid and it really helped. She does still have occasional migraines now but they seem to be when she hasn't drank enough.

Thank you for that info @ButtSurgery Time for another discussion with my GP I think

Sorry to hear this OP. Migraines suck.

Mine are triggered (usually) by bright reflected light but with other factors eg tiredness, hormones, coffee.

I have recently started getting them in clusters, and this year & last had more than normal at this time of year so might be something to do with the angle of the sun.

Apparently most people with aura migraines are deficient in magnesium so that’s something to look at as well as riboflavin. Also coenzyme q10. If you google migraine supplements there’s some info on the migraine trust website with doses etc (proven supplements rather than herbal things). Also worth getting her eyes tested as again mine are worse when tired / need new glasses.

Oh also please be aware that women who get aura migraines shouldn’t take some contraceptive pills (increased risk of strokes or something) - can’t quite remember the details

It's really common for them to be frequent and at their worst when hormones are involved, and in teenage girls they can come on thick and fast. Is the GP referring her to neurology and have they ruled all the obvious things out? Has she kept a food diary for a few months?

Does she have any other medication? My son is 15 and has had migraines for 7 or 8 years. He was prescribed zolmitriptin a few years ago and it works really well, especially if he takes it as soon as he feels one coming on. He has ondansetron as well but that’s really for nausea/vomitting.

Thanks so much for your responses, I really appreciate it. Currently taking ondanestron and ibruprophen - on the two occasions shes taken them immediately, it's been short-lived - back to normal within a couple of hours. The others have varied, the worst being Weds this week when it was 2 hours before she had anything apart from paracetamol (was in school and they wouldn't let her leave...) and then couldn't keep them in her. Had an eye test nearly a year ago about a month before first migraine and all was fine, plus they had a good look at eye hospital in Nov. No referrals (yet). Have started a diary now.

I have hormonal migraines - remember, fluctuations in hormones don't just happen before a period.

I get the tingles you've mentioned as well as the visual aura - but until you're used to them;m, they're frightening. I go numb at times.

Have a look at migraine prodrome - it'll show you some of the precursors which may help getting the meds in before the worst bits. Weeing a lot is one of my biggest precursors but there are lots of weird and wonderful symptoms.

Hope this helps even just a little bit x

the worst being Weds this week when it was 2 hours before she had anything apart from paracetamol (was in school and they wouldn't let her leave...)

This is very poor on the school’s part, @Worriedworried1 - I’d hope that they’d be understanding that a pupil with migraine needs very quick access to the appropriate medication, especially as you mentioned that when she took her meds quickly, they did head off the attack. Catching it in the early stages is key with migraine. Is it worth a conversation with school? When I was still in primary school, I was able to alert any teacher immediately if I felt an attack coming on, and more than once someone actually took me home (although admittedly our house was literally about a 30-second walk from school!)

You are exactly describing how my migraines were at that age, although I also had mental confusion and had trouble recalling the most basic words. I never really found a good treatment or a way of avoiding them. But they often become much less severe with age. The last bad one I had was at age 21. I’m now 50, still have them with the same frequency, but these days it’s just the visual disturbance, occasionally accompanied by the headache.

My DD and I have had them since this age and we both get hemiplegic (numbness, tingles) and clusters it’s so annoying. Getting out of a cluster is frustrating and they can become chronic.

Make sure sleeping is in a good position as mine can be triggered by sleeping in a bad neck position or looking down at a phone or desk for too long. Working out triggers is helpful but I found the oral hormones from contraceptives are just an absolute NO for both of us (not that your DD is but this is the start of her likely not being able to easily take them in future) also get her eyes tested. Both DD and I have astigmatism which I think makes things worse so we use eye drops to keep our eyes lubricated and take regular screen breaks, and wear our glasses frequently.

I used to get more aura but now I do not - this stopped when I approached 40. I feel weird odd and dizzy and confused and struggle to form words and this is now the start of my migraine. I have to take meds the moment I get any symptoms as I think you have about 20 mins from the start of a symptom to get the meds in to stop it getting worse.

Your DD’s sound the same as mine too at that age if this is reassuring

I just came out of a 8 day cluster headache cycle it was grim

I hope your DD is ok

We tried sumitriptan but it makes us both throw up!

I added on I had a condition called Alice in wonderland syndrome as a small child and no one knew what it was but turns out it’s a type of migraine predictor

Have you looked into piercing? It needs to be through the thickest part of the vagus nerve so you need to go to a place that has the right equipment. It works long term for about 30% of sufferers, up to 6 months for 30% and no effect for the other percentages. It worked for me, and has been a miracle. I didn’t want to take the amount of meds needed to control migraines. I have had a couple of aura migraine since but no pain ones.

Hormones and stress are the two biggest factors for me. Sumatriptan has made a huge difference to me as I no longer have to suffer hours of pain and ride out the migraine. I do get clusters of them sometimes though and that can get pretty desperate - waking in the night so you don't get a full night's sleep then lack of sleep is a migraine trigger and it just goes on. I've had weeks of this and been diagnosed with a number of different things when this has been going on, but in retrospect realised it was migraine due to stress.

I don’t think it goes through a nerve that would be very unsafe. Your vagus nerve runs through the centre of your body it is not in your ear.

A daith piercing is alternative medicine like acupuncture it’s not been proven to help everyone it’s an option but it’s very anecdotal. It’s a pressure point which could target the vagus nerve but it might not and cartilage piercings are tough going (I have one). I actually like acupuncture so I am not adverse to it but not everyone responds to it in the same way and I don’t think the piercing has been proven to help migraines that are mostly caused by hormonal changes in young women sorry

I’m part of a larger trial being run by The London Migraine Clinic.

The piercing goes through the auricular branch of the vagus nerve. The piercer uses a sonic machine to find the thickest part of the branch possible for the piercing.

As I said, approximately one third of people on the trial have reported significant improvements, one third short term, and one third no change.

It might work in this instance, it might not, but given the alternative is a large amount of long term medication, it’s definitely something worth considering, and if it doesn’t work, you still get a nice piercing at the end of it.

Forgot to say that the trial also tracks periods / migraines so they are looking to see if the piercing helps with migraines caused by hormonal fluctuations.

@Worldgonecrazy I do think there is a level of misunderstanding. You don’t pierce any nerve this would be quite risky you are putting an object in that might stimulate a pressure point (nerve ending) at the end of a nerve ending fibre with you can do by rubbing your ear lobe in that section as well or having acupuncture. You aren’t piercing a thick branch of a nerve (nerve endings are tiny) it’s a thick piece of cartilage. I am not against this science I considered it myself (it also looks nice) but I already have a serious nerve damage in my face from a surgery so I am wary of that also cartilage piercings can be brutal to heal with big piercing bumps and trying to sleep so there are pros and cons and a young 12/13yo has school which might not allow it so I am not sure how practical this advice is but I am glad it is working for you. I understand the human anatomy and I even looked at the Migraine Clinic to check out what this is and I think you have misinterpreted some of the details a little that’s all. Nerves and nerve ending fibres are technically not the same thing. Nerve endings are for things like sensations, heat, cold, pain, pressure, heat and a nerve is the main pathway for transmitting from brain to limb or organ. if you lost sensation in the tip of your finger through a burn your nerve ending might or may not regenerate but you would still be able to bend your finger and feel the rest of it. Your main nerve to your finger might signal a different sensation of pain or numbness to the tip but it wouldn’t affect function of the limb. I have a nerve damage in my face and actually it’s funny how the body gets used to something and acclimatises to it so it becomes your new normal. I can still move my face but it feels weird sometimes - most of the time I don’t notice it. I think with a daith there are so many factors with migraine triggers it’s one tool but you would probably still reduce triggers such as food, light, positions and it wouldn’t have much effect on hormonal changes.