Hi I am new here. I need advice for my daughter diagnosed with migraines last August latest preventative toprimate 50mg has stopped working. No painkillers help. Imigran nasal spray at acute attack never worked. We are awaiting follow up at hospital. She is missing a lot of school. She's eliminated triggers but obviously cannot eliminate bright strip lights, noise, having to concentrate with a constant headache at school. I don't know what to do /where to turn next. Any advice?
Help for 13 year old with constant mi... - National Migraine...
Help for 13 year old with constant migraines
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Duvetdays15
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If your hospital appointment is a way off it might be worth going to the GP and trying a different preventative, there are many. There are another 6 triptans you can try too. I'm onto my 5th over my lifetime they periodically stop working and I have to swap them round.
You could also try giving The Migraine Trust a ring bc they might be able to give you more specific advice for children.
If you are not already keeping a migraine diary I suggest you start the neurologist will want you to keep one. Write whether she has a migraine and give a 1 -10 pain score and what painkillers she takes if any. I've had to keep one for 20 years.
Also be aware that too many painkillers cause rebound headaches so if she is taking pain killers on more than 8 days in a month they might be causing daily headaches.
Also if you are looking for triggers, which is not something I would do personally, then be aware the migraine can start up to 2 days before the pain starts so your triggers maybe happening days before the event.
Thanks for your reply. I am awaiting GP to call. They have become debilitating for her and she is missing out socially and at school. I will try the migraine trust too. Why would you not look for triggers? She has cut out chocolate and fizzy drinks, but is still suffering.
The reason I would not look for triggers is partly on the advise of my neurologist and also because of my experience. I have chronic migraines so my brain is in an excitable state almost all the time, so arguably almost anything could be a trigger and therefore impossible to avoid.
The second reason is if we know the migraine could have started 2 days before onset of pain then that makes it extremely difficult to differentiate between the many smells, sights, food, stress, hormones, sleep etc that could have caused the migraine. This makes any kind of data gathered this way not very useful and lead to more stress which itself could trigger a migraine.
And thirdly misconceptions about what are likely triggers also muddy the water. Chocolate being a classic example. There is no evidence chocolate triggers migraines but there is evidence that the "prodrome" stage of the migraines causes craving of sweet things like chocolate. So during the days before the onset of migraine pain we tend to want sweet things, so we eat them and then the pain comes. So an association is formed, but really the craving was the beginning of the migraine not the cause.
The only food trigger there's is data for is gluten for gluten intolorent people. Cheese, chocolate, wine, citrus, sweetness etc there is no clear data for but we do know that the prodrome part of the migraine itself alters food cravings.
Thank you for your information very interesting.
Hi. I really feel for your daughter. Bless her it’s so hard. My migraines started at age 51 so almost certainly hormonal. I agree with what Cat00 said about triggers. There is a brilliant book by a UK based GP called Managing Your Migraine- by Dr Katy Munroe. Explains all about migraines, why you might get them, the different types & symptoms & talks about triggers. Basically she says the same as Cat00. I’m currently battling daily migraines & I’m living on Zolmatriptan which really isn’t ideal & I know it probably is causing medication overuse headaches but what can you do? I have to function. I really, really hope you get some relief. It’s such a horrible condition. Sending hugs to you both 😊.
I'm surprised your GP will prescribe more Zomig than you are "allowed"? Even 3 weeks off painkillers might be enough to reverse medication overuse headache. I've been put on 2 "medication holidays (🙄)" as they like to call them, 1st time was 3 months but second time was 3 weeks. Obviously I was having migraines everyday but at least you know there is an end. As it happens my migraines didn't change substantially so the Dr's finally accepted I did indeed have chronic migraines which ultimately gave me access to better meds. My migraine frequency isnt that much better but the severity is SO much better.
Looks like I should read this book Dr Katy Monroe as I already agree with her I'll probably like it! 😁
I think the NHS is so broken that my GP will prescribe anything right now just to keep me quiet. The trouble is that if I don’t take them then my life would just be lying in a dark room & I think I’d rather be dead. I’m also on Candasartan which I’ve been gradually increasing but they don’t seem to be helping although they did when I first increased them. I’m also on a waiting list for CGRP injections.
I definitely would recommend the book by Katy Munroe it really helped me understand migraines & feel a bit better about it. It’s such a horrible debilitating condition.
If you're taking painkillers more than 8-10 days a month you won't be eligible for the CGRP. Even if the GP's over prescribe the neurologist won't accept it. I presume you've tried a couple of other preventatives too bc that's another requirement for the CGRP?
Actually it’s my Neurologist who said I was eligible & has referred me to his clinic. Yes I was on Propranolol for years which was quite effective then stopped working. Then mirazaprine and now Candasartan.
That's unusual never met a neurologist that would tolerate too many pain meds. Hopefully the CGRP will work for you, I've been on it for 2 years now with mixed results but then I'd been on about 13 different preventatives over the years. Then Botox for 6 years now CGRP, it's a journey!
It definitely is debilitating. My GP hasn't been much help and won't prescribe as she's under paediatrics. Really she needs to be referred to a headache clinic but a lot of them she's too young for.
Getting help for kids is particularly hard that's why The Migraine Trust liase with schools to help them better understand the needs you have. I know its hard, I've had migraines since I was 5 and I was at boarding school so just kept getting punished for not be able to keep up. A parent fighting for you is a wonderful thing and although you may feel helpless just having a witness to your suffering and being believed goes a very long way.
Its really important that you try and reduce the frequency so they don't become too chronic, because they're harder to treat. If you can't get help with your GP try writing to the practise manager, they can't ignore letters and the practise manager is more likely to push on your behalf. Failing that go to PALS, saying she can't have anything bc she's so young just isn't true, there are kids getting treated but it's hard to access.
Thank you. I've ordered the book.
I have had migraines since I was 15 but only tried preventative medication when I was 30. I couldn’t find any triggers really and in my mid 30s a neurologist found that I have a hole in the heart which can cause migraines. He put me on 10mg amitriptyline at night, 25mg atenolol in the morning and rizatriptan to take when I got a migraine. This reduced my migraines for many years but I am now struggling to get them under control again. Does your daughter have aura with her migraines? Has she tried rizatriptan (maxalt melt) when she has an attack?
I really feel for her and you. It’s horrible having to deal with frequent migraines.
No she hasn't tried that drug. At the moment she only has a preventative nothing prescribed for an acute attack. I think some of the issue is having to see paediatrics as under 18 rather than a neurologist who seems to only be available for adults.
Morning, I have soft ice packs in the freezer & put one at the back of my neck & one across my forehead or eyes. I have little cloths to cover the packs, the cold helps me sadly it does not take the pain away. Yes definitely keep a migraine diary like Cat00 mentioned - very important when seeing the Neurologist. Not sure if your daughter wears glasses but mine have a tint on them now which helps keep bright light out. I really feel for her & hope she gets some relief sooner the better. Ps be very careful what med you are given - I lost memory from using Gabapentin, scared me & broke my heart as things have never been the same for me x 🦋
Thanks for the reply. This is the worry I have for her constantly being on medications its not something I really want for at 13. Did you get the tint put on at a normal opticians or are they specialist glasses? The ice sounds helpful but not something she can really do at school.
Hi there no definitely can’t use ice packs at school but you can get Kool strips from Home Bargain or the chemist - I wear these at work at the base of my neck my hair down so nobody can see. Also, look online you’ll see actual head packs of ice - they look like rugby hats I nearly purchased one but my friend bought me the large ice gel packs which have been great for me so far. My glasses were from Asda for years & each year I had a stronger tint put on. I go to Boots Opticians now on a yearly basis due to my migraines, they can put the tint on too if I have to update my lenses. Not sure of cost as my job pays for most of it through employee benefit. I have suffered for 15yrs with migraine, I have tried everything to no joy. 1 nerve block (never again) but I hear it can work for some people. 5 sessions of Botox - again no help. Last week I have finally been approved for the new Aimovig injection, I pray that it brings me relief.
I recently started to take Bio-Kult Migrea which is a probiotic from my local health shop after chatting to the lady who owns the business & she said many migraines start in the stomach! I have not heard this before but am aware certain foods can be triggers. I have been taking this probiotic for nearly two months now & I have to say I am still having migraines but they have not been so severe & my energy levels have increased a little. M x 🦋
Thanks I will look into all of this especially the probiotics and vitamins.
Have you tried Tens machines? You can get tiny ones operated with watch batteries. They didn't work for me that well but my migraines were very entrenched, they do work for a lot if people and don't carry the risks medication does.
I used the one below, but there are many others for some reason I couldn't get an ebay link so you'll have to copy all the blurb and put it in Google.
google.com/url?sa=t&source=...
They often help a bit bc they are distracting and can at least make you feel like something is being done?
So awful to have them so bad so young, but sounds like there are still lots of treatment options available to try.
Definitely worth getting in touch with the national migraine center, or pushing for a referral to an nhs headache clinic. They can offer you lots of preventatives that aren’t available through the gp or general neurology.
Botox has been the best preventative for me, not a cure but definitely makes life with chronic migraine more manageable. There are lots of other preventative to try though so don’t give up hope.
I need to take an anti nausea with my abortive, as migraine can cause gastric status. So might be that the painkillers and triptans aren’t being absorbed. Although the nasal version should still be absorbed. There are lots of triptans to try though, I use frovatriptan as I have long lasting slow to build attacks.
For light sensitivity I have found avulux glasses so helpful, but they are sadly expensive. They have helped shorted the duration of my almost daily attacks, and they give me clear vision . So they might be good for your daughter, and if light is a trigger for her be very beneficial.
I also like the cefaly device, but think Lloyds pharmacy have a cheaper version. It’s like a tens machine for your head.
My neurologist recommended taking riboflavin and magnesium glycinate or malate, so might be worth looking into this.
Also worth looking into feverfew, ginger, coq10 as these can be helpful for some people too.
Some people seem to benefit from low carb/ keto diets too. Only worked very very slightly for me though, but might be worth trying.
4 head stick is soothing, so could help at school. Just takes the edge off
The heads up podcast is great too.
Best wishes and hope this is helpful x
I've been looking at avulux glasses, she does wear glasses but so expensive. Also the cefaly device. I contacted them about her age and there's been no studies on the effectiveness for under 18s.
Try zenni optical.. online, I have ordered my glasses from them for years.
I can only relay my own experience as somebody who's had migraines a long time. No drug has ever stopped my migraines but sumatriptan has been the most effective but even that has its limits. All the same has been great for short term relief and I can go a couple of weeks without, however equally often the pain will come back the next day so hardly a miracle and as other people here have said best not to be on medication at all if you can find other ways. Other than that trial and error has found omitting certain grains, nuts and beans have significantly reduced the frequency. Also my migraines may be linked to excessive histamine release; certain foods are high in histamine and I try to avoid them but it is difficult especially with the foods I'm already omitting (some of which aren't high in histamine). The body produces histamine anyway linked to inflammation so its about lessening the load rather than avoidance. Stress is a big one with migraines. Perhaps your daughter is feeling stress around certain aspects of school? I wouldn't know but worth investigating. I often remember some of my worst migraines would start Monday afternoon at school. Hope something of this helps migraines are not easy and can be distressing but its not necessarily a life sentence. By catching it early on you are in a better position to resolve it.
Thank you for your reply. Stress & School is definitely a factor for her, they have been quite good with things after I contacted them but no change in her migraines
hello there, Sorry to hear about your daughter.I started with migraines when I was about the same age.When I had my first one I was at school and thought I was having a stroke as I have migraine with aura.It could have been due to my periods starting but there is also alot of migraine in my family.Over the years I have taken triptans( the nasal spray as I suffer constant vomiting) but had to stop as they started to get rid of the migraine but brought on an excruciating rebound headache.My migraines became more infrequent as I started the menopause but resurfaced when my son was diagnosed with a serious illness.The stress of it brought a return of frequent migraines.For this my GP prescribed amitriptyline 10mg each night.It can be used for nerve pain and as a migraine preventative but is actually an anti- depressant in larger doses.This worked brilliantly for a couple of years then I increased to 20mg per night as it lost it's effectiveness.When you get frequent migraines , for me I think a preventative is best.You need to break the cycle, you worry you're going to get a migraine and the stress of that can bring it on.I have recently had to add in another preventative as well as the amitriptyline.I have had graves disease since 2018 and it has caused an overactive thyroid.This has caused weekly migraines again so my GP has prescribed 20mg proprananol 3x a day to slow my fast heartrate and calm everything down.It has worked well.If I do get a migraine now I can function.and it is mild and much less painful.Things are so much better now and alot more is known about what can cause migraines and how they work.I would suggest going back to your GP to discuss treatment options.There may be more than I have suggested.Also read up on it as much as you can.Lots of things can cause a migraine for me for example skipping meals, not getting enough sleep, hot muggy days, bright sunshine, stress.Some things you might be able to help your with and might improve things for her.Wishing you both best wishes.
Thank you for your reply. I have contacted GP again they won't prescribe anything in the meantime whilst we await consultant appointment. Looking at what he suggested next in his latest letter, she's already had that prescribed last year and it didn't work! I feel like I'm going round in circles. I must admit I'm worried about the cocktail of drugs that they are willing to prescribe a 13 year old, it's not really looking for the root cause, I know with migraines it can be a whole lot of things.
yes that's very true.It's a matter of trying to find the right combination.I really feel for you and her as I've had this fir as long as I can remember.I suppose you can try all the practical things while you wait such as regular meals and sleep and maybe exercise could be a good stress reliever.The only painkiller that can touch my migraines is cocodamol but I don't know whether that would be ok for under 18's.Also sometimes too many painkillers can make headaches worse.My mum swears by Syndol which is specifically for tension and stress headaches.It is basically cocodamol but with a muscle relaxant added to relax tense muscles at the back of the neck.Again I don't know if it would be suitable for your daughter.My children who also have migraine always had a couple of painkillers in their pocket at school to take straight away and the school were notified that they could come home if a migraine came on.Wishing you all the best.
Wow! Such great advice here from the list. I have suffered for more than 20 years with migraines and our son has "abdominal mirgraines", so lots of experience.
Yeah I was excited to see someone recommend the "HeadsUp" podcast here is the link to the episode on children
Here are a few extras:
Make sure she is eating 3 meals a day with adequate protein in each.
Make sure she is getting regular sleep
Make sure she is drinking lots of water
Make sure ( I know they are constant) that when she first feels the tinge of pain she stops and acts on it.
When she gets in a "cycle", which it sounds like she is in now, she treats them until they stop ( yes sometimes this means IV hydration and medication in an emergency room)
Make sure you write a 504/health care plan when she returns to school to cover all aspects of her needs ( maybe special tint on glasses with the ability to wear them inside, medications at school or on her, etc)
Not many doctors do this but she may need a "Cocktail" of medication when being treated. Anti-inflammatory, Migraine, Anti-Nausa.
What has worked best for me ( we have not needed this for our son, yet ) is high dose of Magnesium Glycinate 3x a day and Feverfew- 2x a day.
She would need a dose and recommendation from a Neurologist or even better a Migraine Specialist. This is the one thing that has changed my life.
I agree, knowing triggers are to much to think about especially with a teen.
I have also learn to use peppermint as much as possible ( roll on and hot tea). When I feel a slight tinge of pain I take deep breath with it.
Hope these help.. seek help from a migraine specialist, even if you have to pay out of pocket.
Good luck.
Thank you for your reply. I am grateful for the advice. Lots to take in, I'm going to make notes from everyone's advice and work through it, everything with migraines takes time. I think that's what School don't understand there's no quick fix.
Dealing with the school is a full time job. I start mid-summer to get all of the paperwork set up to have the medication at school. Since our son is 15 he is much more responsible and next year ( junior) I am going to push to have him hold his own medication so he doesn't have to go to the nurse, he might actually take the medication if it is on him. You know he doesn't want anyone knowing about the issues he has. I still have to do the paperwork and check on the amount he has used especially when he is only given a small amount monthly.
Here is what I know, as long as you have the correct form filled out and an original signature, they will not give you any issues. I have to place 3 medications there and they must be sealed in small bottles if over the counter. RX must each have their own containers and labels must match. If label says 4, pills there must be 4.
Our son is given a "cocktail" when his episode start and it has been much better than given each one and waiting to see what happens.
Hope you are finding things that work for your daughter.
Having sufferred with chyonic migraine most of my adult life, I was heart broken to see my 12 year old daughter starting to get them too. Seeing them in so much pain is terrible, and feeling that they may have 'inheritated' the condition from me makes it even worse. But, 2 years on and the attacks seem to have calmed down with only one migraine in last year (which lasted 3 days).
Every case is so individual and I know what works for me may not work for others, but there are a few things we have experienced that may ring a bell to help you and your daughter, in addition to the advice already shared by others.
We have switched to oat milk, and avoid hard and blue cheeses, but mozarella and feta seem to be okay for us.
Over ripe bananas, tomatoes and onions are definately a thing for us, as the chemical composition changes in these as they age...but they are fine if we keep to fresh produce and eat them within a few days.
A consistent sleep pattern and no skipping of meals also affects us. Sleep especially.
Whilst we try to obviously eat a healthy balanced diet, I also started to give my daughter a quality multi vitamin and fish oil just to ensure she was getting all bases covered as a minimum. I also think probiotics have a role to play...my daughter had an operation when she was about 6, which totally wiped out her healthy gut bacteria.
Oh, and lemonade is a definite trigger (i think due to the levels of aspartame). We only had this occassionally when out on special occassions so it was easy to spot.
I can get away with an occassional coffee (about 1 every two weeks) and still drink tea (some caffeine okay), but if I go 'over' my limit I can feel it starting to affect me.
Pain intensity and frequency have eased over 6 months for my daughter and about 18months for me (I think due to me having a bigger volume of toxins in my body? I'm not sure. Maybe they would have eased anyway?...)
Neither of us are taking migraine specific meds now and only take ibuprofen and sleep at the very first sign of one coming on. But, I know that at my worse NOTHING would stop one coming on once it had started - even anti-epileptic drugs. 😭 (And I had to go part-time and basically lost my career due to migraines. So thats where this forum has been fantastic for support to get through it.)
The problem is that there are so many 'dos and don'ts' that get fired at you it takes time to work through them all to learn by trial and error, and you just want them to stop so they can be pain free. So, I really feel for you. Hope you find something that at least eases their intensity asap. ❤❤
Thank you so much for your reply. What made you switch to oat milk? Do you recommend a particular probiotics /multi vitamin. I had read that migraine can start in the gut?
In honesty - pure desperation! I read in different places that dairy contains casein, 'considered a high-quality protein, as it contains the full set of essential amino acids which we must find through our diet, as our body cannot manufacture them itself.Casein contains casomorphins which can have a drug-like opioid effect, which can result in feelings of sluggishness, brain fog and generally feeling ‘doped up’ as we try and digest it. Casein is a little known, but widely consumed trigger for migraines and headaches.'...That was enough for me to make the switch as I felt i was living my whole life 'doped up' and felt I was moving at 'sloth pace' 😉 i didn't go completely dairy free, just drastically reduced the volume of dairy produce in my diet, which was a dairy heavy before. (And I'm a dairy farmers daughter) So, it comes back to the desperate trial and error scenario again: I simply tried it and felt better 'mentally', not so 'head heavy'. So I've stuck with it. Oat milk only because it tastes creamier than other non dairy alternatives and its climate change friendly. But I'm rambling now. 🙈
Re probiotic/multivitamin I get mine from cytoplan.co.uk/
They are more expensive than high street but made to pharmaceutical standards meaning less filler ingredients. They have a free qualified helpline you can call for specific advice. I first heard of probiotics being a potential root cause from NHS Occupational Health when I was referred through work.
If a doctor agrees, Duloxetine is a better preventative medicine than others. If no option, please try vegan diet, just for 1 month to see the result. Whenever I go vegan, I get far less headaches / migraines, but not everyone is same - hence you have to try. Also, make sure no sugary drinks are taken.
Hi thereI haven't read everyone's responses so please forgive me if I repeat things that others have said.
With reference to the migraine diary - has your daughter started her periods? The age of onset of her migraine suggest, to me, that they may be related to puberty and the fluctuating levels of oestrogen and progesterone in her body. You should try to get her to record premenstrual symptoms, such as tender breasts, and her periods as well as her migraine. It might be worth asking your GP for a referral to a gynaecologist who specialises in women's hormones (likely to also specialise in menopause).
Ice packs - you say that these are not really practical at school. As a teacher in a secondary school, I would respectfully disagree. Migraine could be regarded as a disability and therefore your daughter is entitled to reasonable adjustment - I would hope that school would be sympathetic and understanding without needing to argue this point! It is possible to buy instant ice-packs e.g. icepacks4less.co.uk/Instant.... She could have a couple of these in her bag for use in school when necessary or gel packs could be kept in the first aid room for her to use. I'm willing to bet that there's a fridge-freezer in there as schools often have to store medication which has to be kept cold.
Pain relief - you say that your daughter has been prescribed preventatives but not treatment for once a migraine has become established. There is some pretty good research which suggests that high dose aspirin taken early in the attach can be as useful as triptans. She could try 4 aspirin, taken with a sugary drink as soon as she feels a migraine brewing. I buy cocktail cans of coke to use when I take aspirin/triptans for my migraine as I don't need a whole can/bottle. It's important that it contains proper sugar, not sweetener, to aid absorption. Obviously, she shouldn't have high doses of aspirin daily but it is perfectly safe a couple of times a week. There is a prescription treatment (Migramax) which is essentially high dose aspirin with an anti-emetic. Aspirin doesn't always work for me but if it kills 1 in 2 or 1 in 3 it's worth trying.
Alternative remedies - I have always been rather sceptical about alternative remedies, I've tried many over the years but few have had any beneficial effect. I recently saw a neurologist who suggested that I revisit them but at a much higher dose. I currently take: Holland and Barrett feverfew migraine relief capsules hollandandbarrett.com/shop/... , 100mg three times a day,
magnesium citrate, 300 mg three times a day hollandandbarrett.com/shop/... and
Vitamin B2 (riboflavin), 100mg three times a day hollandandbarrett.com/shop/... (Be warned, this one makes your urine a weird yellow!!).
It's not a cheap option but it's given me my life back. After years and years of chronic migraine, 3 or 4 times a week and often 8 or 9 straight days of migraine around the time of my period, I now have whole migraine free weeks and those that I do get are generally much easier to manage. It took about three months of taking this combination of supplements at this dose to see an improvement so it's worth persevering.
Good luck to you and your daughter. You both have my sympathy.
Thank you for the information. I am making notes on everything everyone has suggested and will go through it, trying to work out which ones to try as it does seem to be trial and error of what will work best for her.
We're all in the trial and error boat!
Hi ChickenKiev (goodname😆). Your story sounds similar to my experience. I'd agree that the magnesium citrate and B2 vitamins were the first step forward for me in actually seeing some hope in getting my life back. When I started taking them, the frequency and intensity definitely eased. And I'd also agree you need to stick with them a while to see benefits - not an immediate effect. Hormones definitely played a major role for both me and my daughter, and we tried everything (like everyone does) to minimise the intensity of the migraines, even if they don't go away totally. I am yet to see the long term effect for my daughter as she gets older, but hopeful with this forum.
Sounds like you have it all dialed in. I have been told max 1600mg daily of magnesium. I take around 1200mg and it is the best thing I have done.
I also take Feverfew 2x daily 380mg.
Thanks for sharing
Magnesium citrate is not the best form to intake. You may try looking into chelated form which is kind to stomach and has higher absorption rate.
Magnesium glycinate or bisglycinate is recommended. Also, when we say, 300mg or 400mg, what you need to see is the "elemental" amount, not the weight of the entire magnesium-containing compound. Often the "elemental" amount is only 100mg per 400mg capsule sold commonly. You should not exceed 400mg elemental Magnesium per day as it can cause kidney damage in the long run. However, if you only take 100mg elemental Mg, it won't work (reducing migraine) ! So, please research accordingly. Try to see the label "elemental". Recently, some anecdotal findings suggest magnesium complex (mixture of Threonate, Glycinate, Taurate) works even better.
What has worked for me is Magnesium glycinate. My Neurologists ( I have seen 2 and both said the same) max. daily 1600mg, I take 1200mg and it is what my body does best with. I take 1 400mg when I wake up, the one at lunch helps the most, because I feel pain right before I eat lunch and then one at bed time.
I have tried Citrate and it did not work as well.
If you read my notes again you will notice that I have written - usually 400mg capsule/tablet contains 100mg elemental Magnesium, hence 1600mg would have 400mg elemental Magnesium, which is the maximum dose for combating migraine. So I have not contradicted your neurologist's advice. However not all manufacturers follow this ratio, hence you need to read the label.
Thanks, I am not saying you are wrong. Just curious why 400mg cleated=100 elemental. Does that mean the pure form is 100mg and the 300mg is "filler". I have never understood.
I certainly don't want kidney damage.
I check blood to make sure every so many years.
There is nowhere that helps explain the high dose. Only my Neurologists.
Thanks, many other people start a small dose and stop becuase they day it doesn't work. We all need education about this.
Be well..
There is filler, but it is not possible to eat just the Mg bit through a tablet or capsule. It needs to be delivered through a compound - chelate, citrate, malate, oxide etc. When the body absorbs, pure Mg would be roughly 15%-25% of the total compound. Increasing elemental part (Magnesium) is costly, and the price of raw materials are going through the roof, hence many manufacturers have stopped making Magnesium supplements recently. I have attached an image as an example.
Magnesium percentage
Hi I'm so sorry your daughter is suffering so much at 13yrs old. My migraines started in 2007 when I started a new job. While in training for my job I started getting vision problems. The words on the screen started moving and going in and out of focus. Then everything would go black and I would jerk awake just before my head hit the keyboard. I finally spoke to my doc and it was suggested I took a long lunchtime and also played around with the colours on my screen which did work. I toned down the colours to pale pinks and mauves and gradually decreased the length of my lunchtimes. I was on painkillers due to a failed back op at the time and my pain was in my pelvis area so sitting was not good for me. I started the job walking in with a walking stick and left in a wheelchair 5 1/2yrs later. My migraines came back over the last year as I kept being moved from around the office and I had to keep re setting the colours of my screen. They began just like they had before and I was given sumatriptan ( 6 a month). By this time I was on morphine tablets for my back and mobility problems ( nerve damage to left leg). I also developed swelling to lower half of left cheek which was finally diagnosed as increased muscle tone due to clenching/grinding my teeth. I was encouraged to use a mouth guard at night and massage with ibuprofen gel. I took ill health retirement in March 2013 and finally the muscle mass has been reduced but not the migraines. I'm off morphine tablets to Tramadol plus a number of nerve pain medication. The words are swimming writing this, hello migraine. When I get the first signs of one I take a sumatriptan put on dark glasses and easy watching movie in dark cool room. Sometimes I crash sometimes I don't but I can't just lay down in dark room as the pain is all I can think about and it just increases. It's all trial and error to find what kicks them off and what helps. I also can't use cold compresses or ice packs as they cause muscle spasms. I have everything crossed you can find some relief for your daughter and reading some of the replies you have received there are lots to think about and explore. Best wishes.
Thank you. Yes, lots of great advice here for my daughter to try. You've certainly been through a lot. It's so hard I must admit I never really understood what everyone suffering with migraines goes through and the fact there is no quick fix makes it even tougher.
I’ve been taking Candesartan, which is a blood pressure medicine. I don’t have I BP. I started taking it January 14, 2014. I’ve had one bad headache since then. I had migraines for over 50 years. It WORKS with me. Good luck. 👍🏻🙏🏻
Thank you for your reply. I take that for blood pressure! I have heard its used for migraines, but at 13 years old I'm not sure I want my daughter to be on this sort of medication but obviously I don't want her suffering like this.
I’m not a physician. It might be OK for her to take it. I’d definitely check with someone more educated than me. I just know it has made a WORLD of difference to me. I hope she can take it and it will give her the results I achieved. Good luck. 🙏🏻👍🏻
Hi, I'm sorry for what she'd going through, it's rough but there's hope. My daughter is 16 and only returned to school in the last month of this school year but hers was complicated by anxiety too. She tried topiramate but side effects weren't good. For her, the most helpful things have been Melatonin (used in children as a preventative medication) and treatment for the anxiety.
There was a major hormonal element for her and this can be managed with other triptans or even neuromodulators such as gammacore( Google gammacore uk)
You need to find a paediatric neurologist, there are not many but if you're prepared to travel and to pay, you can find really excellent ones across the UK.
Good luck and hang in there! x
Thank you for your reply. Did you see a paediatric neurologist? Would you recommend any? We're south east England. I will look up the advice you have given thank you
Hi, we live in North London and my daughter first saw Dr Prabhakar at Great Ormond Street, he is excellent and very difficult to get to see! We were referred as an urgent referral after an inpatient hospital stay. She now sees Dr Sushil Beri, he's great. Other names I've been given are Dr Maria Kinali and Dr Antonia Clarke. Good luck.
Thank you so much for the information. Interestingly there seems to be a hormonal element to my daughter's too, can I please ask what the doctors did to diagnose this/what they prescribed? We have been today to the hospital and seen a paediatric doctor who has said he can do nothing further for her. He upped her toparimate to 65mg from 50mg and said he'd refer to the evelina hospital. She's got no medicine for acute attacks, he said to bring her to a&e and they would admit her, if the toprimate doesn't work, why I don't know when he said they can do nothing further! We are going round in circles. I'm going to make enquiries in the morning about the doctors you mentioned thank you.
Have you listened to.the "Heads Up" podcast, they have an episode of children. Good luck
Yes I have.
There is a comment section I wonder if they could help you.
Hi, the hormonal element comes into play only if your daughter has her migraines just before and during her period. If that's the case, we've been told they would consider a progesterone only pill.
Being admitted to hospital can be helpful if desperate. The reason my daughter was admitted is that she had a continuous migraine with flashing lights and extreme sensitivity to light and smell for weeks on end.
Being in hospital was not great because of both endless waiting and the environment isn't great for migraines! However, it meant she was referred as urgent to GOSH (4 months wait) and the ball started rolling.
Important to say that if her migraines are continuous, it's called a status migraine and the intervention is usually an IV for 24 hours that breaks the migraine and they begin a preventative but that takes weeks to build up.
The other highly recommended intervention for migraine in children is an occipital nerve block (Google it and if helpful, some of those names I gave you can give that injection).
Don't give up, the public and private sector are overwhelmed so you'll need to be patient and tenacious and politely determined to get your daughter what she needs. Don't give up and feel free to keep asking for help.
Hi again, Forgot to say that it's worth looking at neuromodulators. These are a non drug intervention that are prescribed and recommended by neurologists. In the UK, the ones I know about are sTMS, Cephaly and GammaCore though there may be more. Again, research them and speak with your daughters neurologist re trying them. I think Cephaly and GammaCore are not on the NHS but sTMS might be. Our neuro strongly recommended a high dose of magnesium too. Hang in there!
Just an update. My daughter has seen Dr Beri now who said it's either ndph (new daily persistent headache) - or chronic migraines. Whichever label it's given the treatment is the same. She's now on Nortriptyline 3 weeks on Monday, so far no Improvement, 400mg riboflavin and has had another MRI/MRV. I'm still looking for answers don't think I'll ever give up. Hope your daughter is well and has found some relief.
Hello there - can I aak if she has auras with her migraines? ie lights that are like a kaleidoscope? If not, I had onset of aura migraines at puberty and found it was usually due to fluctuating hormones, exhaustion from not getting enough sleep, not eating regularly and not enough nutritional foods 24/7. And being dehydrated - must drink 2.5litres of water a day. But more than this, I found out I had a small hole in my heart the other day and apparently nothing to worry about but those with them can often have lifelong migraines of this type. Well I never! I do hope that helps her… There is the Migraine Assoc or similar that might help? Take care, D
No lights like a kaleidoscope.
Hi, I’m sorry your daughter is going through this, I was the exact same but I have lots of health issues (brain tumour and epilepsy) i would request an MRI just rule out anything serious, there are so many medications that may help with this probably more difficult to prescribe due to your daughter’s age, I’m really sensitive to medication so have tried so many and not been able to stay on them due to the side effects being so bad for me and I’ve had Botox injections from an nhs pain clinic unfortunately that didn’t help but could be something your daughter may benefit from if eligible. I use an app called migraine buddy where I log them just so I can remember, it also logs triggers (mine are things like missing/skipping meals, being unhydrated, I drink 5L a day now, strong chemical smells, bleach is the worst for me and bright and flashing lights, also changes in the barometric weather system too but I can’t control that), I log them so I can avoid them but it doesn’t always work, everyone is different so will react differently to what ever their triggers are. I am currently waiting for CGPR to be prescribed but with the NHS being so busy and that, it’s probably going to be a long wait. I also see a chiropractor who adjusts my neck to help, and use ice packs. Keep fighting, it’s so difficult but you'll get there eventually, it’s just such a shame that the nhs is under so much right now.
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